I just read a beautiful blog post on leaving the birth place.... http://www.anktangle.com/2012/04/dear-daniel-on-leaving-your-birthplace.html?showComment=1335798097098#c4948304106715130888
With our still very recent move to a new home, and then celebrating Liam's 6th Birthday yesterday this was a very touching post for me.
I have moved from my child's birth place on several occasions before... the first time was from Ft. Irwin, Calif. Our beautiful Sariah was our first baby born at home. There, we were supported by a couple of friends and we had her birth in our large laundry room on a double bed we borrowed from another dear friend Tandy (who missed our birth as she had gone 'home' to TX to be able to have her baby due the same day but born two weeks apart, with a MW at a Beautiful Birthing Center in Dallas http://birthcenter.net/).
Our sweet Hannah was born at our home at White Sands Missile Range, NM. My dear friend Tandy was able to come (from Maryland this time) and be with us for this birth. She was a wonderful help, along with the other friend and Midwives that we had to assist us during this birth on a bright Saturday morning as well.
I remember it being a bittersweet moment knowing that we have 'lived' with those memories of where our baby(s) was born, in the house with us that we'd reflect on as we went throughout our days.
Yesterday morning dad was talking to Liam. He asked him if he knew where he was born... he had to 'think' about his answer for just a moment and then said, "in the Kitchen!" and he sort of pointed his finger. Yes we agreed, but not 'this' kitchen, the kitchen in our old house... then dad asked him further, and he said in a tub! Yes, son, you were born in a pool of warm water, to the welcoming arms of your parents and your sisters who were so excited to see you and to know 'who' you were!
I watched your birth slide show again last night and tears ran down my face at the memories of that beautiful Spring Saturday morning, surrounded by family and friends. Their love and support for me in that moment were wonderful.
http://www.west-point.org/users/usma1989/46946/liam_birth.zip
(this is a large file, and it takes a bit to download. The slide show with accompanying music were put together by Kristin at http://www.whispersphotography.com/ it is about 8 minutes long. For the more squeemish, it isn't very graphic at all. What little you see, is under water, so very distorted, and a baby's head is covering most anything anyway in the pic's).
It's a bit hard, and like I said, bittersweet to move and leave the place that was so special to us. I somehow want to take just a bit of that place with us as a memory... of course, the beautiful pictures and of course YOU are wonderful reminders of that very special day! It's fun to remember, even if it brings tears to my eyes... they are mostly tears of joy at the memories. I LOVE you son and can not imagine what my life would be like without YOU in it!
Showing posts with label Liam. Show all posts
Showing posts with label Liam. Show all posts
Monday, April 30, 2012
Friday, April 13, 2012
Hair today, gone tomorrow...
After a friend showed me how, I bought some clippers and started cutting Liam’s hair several years ago, and soon began cutting Bill’s hair as well. Things were going along fine, mostly. I didn’t always cut it exactly the way (I only really know one way to cut it – shaved, depending on how long a blade I use it is either shorter or a little bit longer, but not so much in the way of variations. That is usually not a problem and if anything the girls want me to cut dad’s hair as short as possible…) I don’t always fit it into our schedule as often as Bill would like, so I’m not as reliable in that way as when he would go to the barber on post, but we have certainly more than paid for our clippers over the years.
Liam would rather never get a haircut. He usually fusses and fights, cries and often has to be bribed, or even pinned down (on someone else’s lap), in order to cut his hair.
Sometime along the way, Amanda picked up the clippers and she would cut their hair instead. She does a really good job, and even cuts her sisters hair occasionally as well. NOT with the same clippers, but with scissors… (a friend of ours showed her some basics for cutting hair awhile back).
The other day, as I’ve been packing and unpacking at our new house, I ran across some hair (curls) of Liam’s from before we went in for his hip surgery two summers ago. I made sure to cut his hair really short before, so we wouldn’t have to deal with it while he was in the body cast for 6 weeks and wouldn’t be able to bathe…
Well, as Amanda was getting ready to leave for college in Hawaii last fall, we made sure to get Bill and Liam haircuts, as by then, Liam mostly liked Amanda to do it more than me. Not that he still didn’t fuss and fight, but he preferred Amanda…
As fall moved on into winter his hair had grown out quite a bit, and we kept telling him he NEEDED a hair cut. He informed me one time that, “This was not a hair cutting house, because Amanda wasn’t here” and that he would wait until December when she came home for Christmas break! Well, he stuck to that, and refused to get a haircut until Amanda came home. His hair would stick out all over the place and he hated to let me brush it or do anything with it!
Back story: when he went to preschool as a 3 yr old, there was a little boy in his class who came EVERY single day with a Mohawk! It was a source of conversation and the sisters would want to ‘play’ with his hair to try to make it into a Mohawk on occasion but he wouldn’t hear of it! He hated it and didn’t like anyone to ‘mess’ with his hair and if we did he was sure to remind us he did NOT want it into a Mohawk! Perhaps this is part of his reasoning behind not liking it brushed and ‘fixed’.
Anyway, Amanda cut his hair, literally, the DAY (night) she got home from Hawaii! So now we have moved on, winter into spring, and his hair had grown out and was beginning to look a bit unruly again… he would be teased by his sisters that he was starting to look like a girl. He HATED that! I would on occasion try to brush it with a wet brush, to have it not look so straggly and like he had bed head –which he did- when he went off to school. He would say he wasn’t getting it cut again, until Amanda came home. So, we’ve dealt with it, messy, sticking out hair and all…
HE had even begun to twirl it around his finger…
However, about two weeks ago, he came up to me one day and said, “You know what? I’m going to get my hair cut on April 8th.” Well, this surprised me and I wondered at the reasoning behind it, and he went on to tell me that he wanted it cut on the 8th because that was Easter… I asked if he wanted to look handsome for Easter Sunday in his new suit, and he just grinned. (I had bought him a suit awhile back when it was on sale, and the shirt was a sort of aqua blue color, that is his favorite color – a story for another day – and I have saved it for Easter Sunday. Not that he hasn’t wanted to wear it all along, but I’ve told him that is for Easter, so perhaps he decided he really wanted to look nice when he finally got to wear the new suit, and needed to have his hair cut to go with it. I don’t know for sure, maybe I’m reading things into it, but it makes for a cute story.
So on Easter morning after the baskets had been attacked,
candy consumed and the general craziness had finished and then we started to get ready for church, he came in, sat down on the stool in my bathroom and got his hair cut. He even picked out which cutting blade guide he wanted.
Say goodbye to Alfalfa. He complained a little bit, but he did great and definitely looked a whole lot better, when we got him dressed and went off to Church.
Now to dress him up again one day and get him to sit still for me to take pic’s of him in his Easter suit!
Tuesday, June 22, 2010
Hip Surgery - Spica Cast
Liam had an infection that setteled in his hip joint as an infant and he had surgery to clear out the infection, but as he grew the hip and the hip joint did not grow quite as we had hoped and expected. We have been watching his hip and going to the Pediatric Orthopedic Dr. every so often for check ups to see how things were progressing. This year when I took him in, the x-rays showed the femoral head was not sitting in the socket where it ought to have been, but up out to the side, and the acetabular joint wasn't formed like it should have been to hold the ball joint down in place like it should have been.
From looking at the x-ray we wondered how he could even walk, let alone run and jump and all the other things 4 yr old little boys do, with seemingly no pain! The only 'pain' he would exhibit was in the middle of the night sometimes, and he woud complain of leg pain, cramps, etc. from the muscle being over tight and working so hard, as he walked with a limp or up on his toes of the right foot to compensate for teh disparity... Freqently he would wake up in the night crying and wanting me to rub his leg. With "Wotion!" (Lotion)...
So after the x-rays and then an MRI that the dr sent us to the hospital to do it under sedation, he told me that it would probably take surgery to repair or try to repair the problems. I asked how soon we 'needed' to do this surgery, and he said not IMEDIATELY, but certainly within a year probably at the most. If we didn't do something then, the arthritis would be worse, etc. as well as the younger the child, the quicker the bones heal and regenerate new bone growth, etc.
This was the same surgeon that did the initial surgery on him when he was an infant, and it sort of just felt like, 'Oh, this is just Liam, and more of what we/he has to deal with in his life...'. From what I with my untrained eye could see in the x-rays, it seemed pretty obvious surgery was probably what he needed. I showed the x-rays to Liam's Physical Therpist, and our Chiropractor, and they both concurred as well.
After a few months and hearing a few stories from other people about children and surgeries, it occured to me, perhaps we ought to get a 2nd opinion before having Liam undergo a major surgery. After getting in with my family care provider, then getting them to send in a referal for a 2nd oppinion to our insurance, and then finally hearing from the other Dr. in B'ham and making the appointment, the only time available was the day before his surgery was scheduled here in Huntsville.
Time went by, and it turned out that we took Rebekah to Tuscaloosa for new/transfer student orientation at the University of Alabama. We ended up staying with a sweet 'old' friend who is now a young married student/graduate and with a brand new adorable baby boy. On saturday, Rebekah stayed behind with our friends, and we came on home. Jessie ran Rebekah around a bit and helped her look at apartments. It was great, since she knows the areas and knew which apartments were in bad areas, and to not even bother looking at them...
Anyway, Rebekah found an apartment, so Bill and I drove with Liam back to Tuscaloosa on Wednesday morning to look at the apartment. It looked fine, and was a decent price, and it was close enough to school, she might even be able to walk to classes, and she gets an extra visitor guest parking hang tag so on game days, dad will have a place to park! yippee!!! So, Bill ad rebekah went back to the office to sign the contract for the apartment, and I went back to J's with the two little one's.
After visiting for a little while, we headed out to Birmingham for Liam's 2nd Opinion Dr. apointment. I figured 'IF' the Dr. had a completely different sort of diagnosis, and recomendation, then I would call and cancel the surgery for the next day, but we took the x-rays and the MRI results, and the Dr. said the exact same diagnosis and surgical treatment. He did explain it a little bit more clearly for me, or in more detail I think, and Bill was there this time, but it was the same. We thanked the Dr. and drove back home to get ready for Surgery the next day.
So, below is the running comentary I made on facebook through out our time in the hospital.
-Liam Hip Surgery –
June 2010
16 June 2010
Today we drove back to Tuscaloosa, to pick up Rebekah who stayed there with a friend and found an apartment. We have a signed lease... and then we went to B'ham for a 2nd opinion from a Ped. Ortho for Liam. We go in for surgery tomorrow morning for his hip.
Thanks all. We are expecting 6 weeks in a body cast. SO if anyone has any ideas about that? I welcome all suggestions to keeping a 4 yr old occupied/entertained.
17 June 2010
6:02 am
Waiting to get started... they haven't messed with him yet, so he's happily playing nintendo ds.
7:34 am
He's on his way back to surgery.
10:51 a.m.
We were waiting for an update... the surgical nurse finally called: Everything is going well. She'll call me again in another hour or hour and a half with another update.
11:56 am
Liam is about done with surgery. They called. He did great. He did end up getting a pint of blood... (not his first transfusion). They are closing him up now, and then they will do the spica cast and the Dr. should be out to talk to us in about an hour. Deep breath... now for the 'fun' part. When he wakes up in a cast, in pain and can't move... Hopefully he'll like all the fun new toys, and games, etc. to try to keep him busy.
3:12 pm
He's in his room. Snoring away - doped up on Morphine for the pain. the Dr. did a femoral reduction (cut a piece out of the femur bone) - it has a metal plate and 4 screws holding it in place, and Acetabular Osteotomy (cut the hip joint, added a bone graft), He is complaining that he itches, and he wanted us to take off the thing that was under the covers that was on him... The CAST! He doesn't really get it yet. he is still drugged up and not sure about what all of this means. He knows he has to lay in the bed somehow, but he's definitely not happy with the i.v. or the pulse-ox little thing on the end of his finger.
3:24 pm
Sorry for all the double photo's... I clearly don't know how to do the whole mobile upload of photos from my phone...
We found this Super hero Squad Bedding on sale a month or two ago. I got it and hid it away... so he'd have something cool at the hosp. He already asked where the blue bed was at (when we had folded the covers down for a bit). I showed him some of the pics of the guys on it, I said, “Isn’t it neat-o?” He is now determined that ‘MAGNETO’ another SHS Character is on it somewhere and he wanted me to show it to him!
3:58 p.m.
Random weird comments from drugged boy: "What if I want to climb on the wall?" I don't think he was fully aware of what on earth he was really saying. Or perhaps he knew exactly what HE was saying, and I just didn't understand.
4:43 pm
Screws and metal plate on his femur
We will have to do a day surgery/outpatient to remove them in 6 months to a year... If you wait closer to 2-3 yrs the bone starts growing around the metal plate and it's much harder to get out/off, if at all. Anyway, he will need another endoscopy in another 6-9 months, so we'll have th offices start coordinating all of that so they can do both at the same time under anesthesia one time for both.
6:58 pm
He wakes up because of a sleep jerk. He starts crying and saying, “help me, I'm stuck!” Then he asks, "why are my underwears off?" Poor little guy is so confused
"I can't move my leg! I can't move my leg because of the thingy (the cast), and I want to move my leg, but I'm stuck!" He's so pitiful!
On the other hand, he's watching Diego and starting to interact with the show and say the things Diego asks the kids to say/shout. He's still in between sleep and wake though.
8:32 pm
So the nurse comes in and talks to him... trying to get him to interact with her while she does vitals... he is SOOOO NOT impressed! He will ignore you and fight you, and he's so DONE already and we are JUST getting started!
Then he tells her she's a meanie, and starts saying Bye Bye! (meanwhile she continues to try and engage him in conversation... "I'm going to get you some medicine" "NO I don't want any medicine!!!!" "it's o.k. you don't have to 'take' it, I will just put it in your I.V...." meanwhile, he's saying NO! and getting more and more unhappy! and she is still trying to chat with him and make it ‘all better’.
Just do what you absolutely have to do, and then be done, please don’t spend 5 minutes trying to explain it to him. He’s not going to be any happier about any of it, and most likely he’s just going to get madder and more upset!
It’s going to be a long couple of days at the Hospital, and a Looooonnnnngggg 6 weeks in the cast!
9:08 pm
She also tells us we need to turn him every couple of hours. (I had read about that, but no one had said anything about it so far today, and I had forgotten to ask...), Bill asks if we can just turn him ourselves, so she doesn't have to come back and bother him again. She was sure she would need to do it. He didn't care who did it, he did NOT want to be messed with to turn on his side.
Shortly thereafter, Liam says his butt itches. (he is having lots of itches, and keeps wanting dad to reach under the cast to scratch his itches…) “Scratch my butt” he says, so dad sneakily suggests we turn him onto his side so we can reach to scratch… It Worked! Usually I don’t think I’d be thrilled with this word or the insistence it was used with, and I probably wouldn’t be posting it, but, it was kind of funny!
18 June 2010
A Looooonnnggg Night! Fever, discomfort, not understanding what is going on. He would drift off to sleep, then have a sleep jerk, and wake himself up. Very sad! He wanted physical contact...
somtimes with dad, sometimes with mom... so we had to play musical beds and figure out how to sleep with him so he could hold a hand, rub my cheek, etc... or he'd want me to rub his leg with lotion, etc... or dad to scratch his itches, (mostly way up underneath the cast on the fully enclosed leg).
the Good news is, the I.V. was disconnected (he still has a hep-lock, just in case he needs something else), and he should get the catheter out soon. The Dr. said we should be able to go home tomorrow. Yay
3:00 pm
the catheter is out! He was NOT happy!!! he yelled out, "she's a bad girl!" about the nurse. Now to see how going potty in a body cast will go! JoY!
5:00 pm Success! Yay!
Chloe Raum
I bet Liam will be a pro at peeing in a bottle by the time this is all over. He might just find it so convenient that he gives up toilets all together!
We had a BM earlier - that was interesting. Bill said, 'he just needs to hold it until dad gets home from work in the evenings, to help hold him over the toilet!' he's quite heavy and not at a very good angle for sitting up!
5:30 pm
We're Mobile! Liam has a wheelchair that reclines, so we're out of bed and cruising the hallways, and playing in the game room! he remembers the game room - the only positive memories he has of this place...
I made him a pair of shorts earlier in the week. I sewed the front and back together at the legs/crotch and left the sides open and put velcro on them so we could pull them up between his legs over the cast and then he is 'dressed'. I only made one pair so far, so I would know if it was the right size, etc. I might need to make the legs a little bit wider. Otherwise they work quite well. Yay!
This pair is Diego and he's playing baseball.
9:00 pm
The latest exchange: Liam "When can I walk?"
Dad " We'll get out of the Hospital and go home and you'll have the cast for 6 weeks."
Liam "6 WEEKS?!?! I don't want to have the cast for 6 weeks!"
I don't know that he even has any concept of 6 weeks!
Yesterday at 9:57pm
I think the calendar idea is a great one. Thanks Chloe! He loves to put stickers on his charts! (when he potty trained we made him a chart. When he sleeps all night in his own bed... he gets to put a sticker on his chart. I'll get the girls on that once we make the appointment for removal. Fantastic!
19 June 2010
6:30 am
Liam - "It's Morning time!" "I want to get up! Can I go to the game room?"
(It's not open yet for the day... he did get daddy to take him for a walk around the hallways)
8:00 am
Ya know, it's just our life - with Liam. Hard, but it's what we do... and as 'hard' as this 6 weeks will be on us, I just have to keep in mind that It's all so much harder on Liam than us.
11:00 am
Waiting for the Dr. from our Dr's office to show up sometime today to hopefully release us! All Liam can say today is: "I want to go home!" "Can we go home yet?"
Did you know you can hide crushed up medicine in ice cream? Thanks dad for that great suggestion yesterday!
It worked the first time anyway - Mint Chocolate Chip! masked any grittiness, and masked the flavor. The second time around... he asked for Vanilla - didn't hide it as well. I don't know if he got a full dose or not. By the 3rd time trying to take the meds by mouth - since the i.v. is out, I wasn't going to try to get him to eat ice cream in the middle of the night – 2:00 am! So we talked and talked about it. He finally agreed to take it mixed in choc milk.
It was not a happy thing, but it had been around 7 hours since he’d had any meds! He is supposed to or can take meds every 4 hours…
11:00 am
Now he's just pitifully whining about going home! and he even said he wanted his medicine at home - chewable tylnol/motrin... he hasn't had any med's since 2:30 am.
1:00 pm
I had Rebekah stop at the store and buy some chewable tylenol - grape flavored, and bring it to us when she came to visit us today. We gave him one of those and he chewed it up fairly easily. So I guess if he's not hurting enough to 'need' it, I shouldn't be too concerned about making him take medicine for pain.
2:30 pm
Just waiting...
Finally around 11:30 I tracked down our nurse, who had only been in once today thus far, to ask her what our plan was for the day. "Are we just waiting around for a Dr. to come and release us, so we can go home?” Is there anything else we are supposed to do today? The nurse had NO idea, and said she'd find out. Around noon I went to find the nurse to ask if she’d found out anything?
She told me that 'they'd be by around 2:30 or 3:00 p.m. to release us'. Great! we WILL get out of here today! I wonder however if I hadn't gone to ask the nurse after waiting all morning, if anything would have been done at all? We might have sat here into the night, still waiting...
4:00 pm
Going Home!!!! yay!
From looking at the x-ray we wondered how he could even walk, let alone run and jump and all the other things 4 yr old little boys do, with seemingly no pain! The only 'pain' he would exhibit was in the middle of the night sometimes, and he woud complain of leg pain, cramps, etc. from the muscle being over tight and working so hard, as he walked with a limp or up on his toes of the right foot to compensate for teh disparity... Freqently he would wake up in the night crying and wanting me to rub his leg. With "Wotion!" (Lotion)...
So after the x-rays and then an MRI that the dr sent us to the hospital to do it under sedation, he told me that it would probably take surgery to repair or try to repair the problems. I asked how soon we 'needed' to do this surgery, and he said not IMEDIATELY, but certainly within a year probably at the most. If we didn't do something then, the arthritis would be worse, etc. as well as the younger the child, the quicker the bones heal and regenerate new bone growth, etc.
This was the same surgeon that did the initial surgery on him when he was an infant, and it sort of just felt like, 'Oh, this is just Liam, and more of what we/he has to deal with in his life...'. From what I with my untrained eye could see in the x-rays, it seemed pretty obvious surgery was probably what he needed. I showed the x-rays to Liam's Physical Therpist, and our Chiropractor, and they both concurred as well.
After a few months and hearing a few stories from other people about children and surgeries, it occured to me, perhaps we ought to get a 2nd opinion before having Liam undergo a major surgery. After getting in with my family care provider, then getting them to send in a referal for a 2nd oppinion to our insurance, and then finally hearing from the other Dr. in B'ham and making the appointment, the only time available was the day before his surgery was scheduled here in Huntsville.
Time went by, and it turned out that we took Rebekah to Tuscaloosa for new/transfer student orientation at the University of Alabama. We ended up staying with a sweet 'old' friend who is now a young married student/graduate and with a brand new adorable baby boy. On saturday, Rebekah stayed behind with our friends, and we came on home. Jessie ran Rebekah around a bit and helped her look at apartments. It was great, since she knows the areas and knew which apartments were in bad areas, and to not even bother looking at them...
Anyway, Rebekah found an apartment, so Bill and I drove with Liam back to Tuscaloosa on Wednesday morning to look at the apartment. It looked fine, and was a decent price, and it was close enough to school, she might even be able to walk to classes, and she gets an extra visitor guest parking hang tag so on game days, dad will have a place to park! yippee!!! So, Bill ad rebekah went back to the office to sign the contract for the apartment, and I went back to J's with the two little one's.
After visiting for a little while, we headed out to Birmingham for Liam's 2nd Opinion Dr. apointment. I figured 'IF' the Dr. had a completely different sort of diagnosis, and recomendation, then I would call and cancel the surgery for the next day, but we took the x-rays and the MRI results, and the Dr. said the exact same diagnosis and surgical treatment. He did explain it a little bit more clearly for me, or in more detail I think, and Bill was there this time, but it was the same. We thanked the Dr. and drove back home to get ready for Surgery the next day.
So, below is the running comentary I made on facebook through out our time in the hospital.
-Liam Hip Surgery –
June 2010
16 June 2010
Today we drove back to Tuscaloosa, to pick up Rebekah who stayed there with a friend and found an apartment. We have a signed lease... and then we went to B'ham for a 2nd opinion from a Ped. Ortho for Liam. We go in for surgery tomorrow morning for his hip.
Thanks all. We are expecting 6 weeks in a body cast. SO if anyone has any ideas about that? I welcome all suggestions to keeping a 4 yr old occupied/entertained.
17 June 2010
6:02 am
Waiting to get started... they haven't messed with him yet, so he's happily playing nintendo ds.
7:34 am
He's on his way back to surgery.
10:51 a.m.
We were waiting for an update... the surgical nurse finally called: Everything is going well. She'll call me again in another hour or hour and a half with another update.
11:56 am
Liam is about done with surgery. They called. He did great. He did end up getting a pint of blood... (not his first transfusion). They are closing him up now, and then they will do the spica cast and the Dr. should be out to talk to us in about an hour. Deep breath... now for the 'fun' part. When he wakes up in a cast, in pain and can't move... Hopefully he'll like all the fun new toys, and games, etc. to try to keep him busy.
3:12 pm
He's in his room. Snoring away - doped up on Morphine for the pain. the Dr. did a femoral reduction (cut a piece out of the femur bone) - it has a metal plate and 4 screws holding it in place, and Acetabular Osteotomy (cut the hip joint, added a bone graft), He is complaining that he itches, and he wanted us to take off the thing that was under the covers that was on him... The CAST! He doesn't really get it yet. he is still drugged up and not sure about what all of this means. He knows he has to lay in the bed somehow, but he's definitely not happy with the i.v. or the pulse-ox little thing on the end of his finger.
3:24 pm
Sorry for all the double photo's... I clearly don't know how to do the whole mobile upload of photos from my phone...
We found this Super hero Squad Bedding on sale a month or two ago. I got it and hid it away... so he'd have something cool at the hosp. He already asked where the blue bed was at (when we had folded the covers down for a bit). I showed him some of the pics of the guys on it, I said, “Isn’t it neat-o?” He is now determined that ‘MAGNETO’ another SHS Character is on it somewhere and he wanted me to show it to him!
3:58 p.m.
Random weird comments from drugged boy: "What if I want to climb on the wall?" I don't think he was fully aware of what on earth he was really saying. Or perhaps he knew exactly what HE was saying, and I just didn't understand.
4:43 pm
Screws and metal plate on his femur
We will have to do a day surgery/outpatient to remove them in 6 months to a year... If you wait closer to 2-3 yrs the bone starts growing around the metal plate and it's much harder to get out/off, if at all. Anyway, he will need another endoscopy in another 6-9 months, so we'll have th offices start coordinating all of that so they can do both at the same time under anesthesia one time for both.
6:58 pm
He wakes up because of a sleep jerk. He starts crying and saying, “help me, I'm stuck!” Then he asks, "why are my underwears off?" Poor little guy is so confused
"I can't move my leg! I can't move my leg because of the thingy (the cast), and I want to move my leg, but I'm stuck!" He's so pitiful!
On the other hand, he's watching Diego and starting to interact with the show and say the things Diego asks the kids to say/shout. He's still in between sleep and wake though.
8:32 pm
So the nurse comes in and talks to him... trying to get him to interact with her while she does vitals... he is SOOOO NOT impressed! He will ignore you and fight you, and he's so DONE already and we are JUST getting started!
Then he tells her she's a meanie, and starts saying Bye Bye! (meanwhile she continues to try and engage him in conversation... "I'm going to get you some medicine" "NO I don't want any medicine!!!!" "it's o.k. you don't have to 'take' it, I will just put it in your I.V...." meanwhile, he's saying NO! and getting more and more unhappy! and she is still trying to chat with him and make it ‘all better’.
Just do what you absolutely have to do, and then be done, please don’t spend 5 minutes trying to explain it to him. He’s not going to be any happier about any of it, and most likely he’s just going to get madder and more upset!
It’s going to be a long couple of days at the Hospital, and a Looooonnnnngggg 6 weeks in the cast!
9:08 pm
She also tells us we need to turn him every couple of hours. (I had read about that, but no one had said anything about it so far today, and I had forgotten to ask...), Bill asks if we can just turn him ourselves, so she doesn't have to come back and bother him again. She was sure she would need to do it. He didn't care who did it, he did NOT want to be messed with to turn on his side.
Shortly thereafter, Liam says his butt itches. (he is having lots of itches, and keeps wanting dad to reach under the cast to scratch his itches…) “Scratch my butt” he says, so dad sneakily suggests we turn him onto his side so we can reach to scratch… It Worked! Usually I don’t think I’d be thrilled with this word or the insistence it was used with, and I probably wouldn’t be posting it, but, it was kind of funny!
18 June 2010
A Looooonnnggg Night! Fever, discomfort, not understanding what is going on. He would drift off to sleep, then have a sleep jerk, and wake himself up. Very sad! He wanted physical contact...
somtimes with dad, sometimes with mom... so we had to play musical beds and figure out how to sleep with him so he could hold a hand, rub my cheek, etc... or he'd want me to rub his leg with lotion, etc... or dad to scratch his itches, (mostly way up underneath the cast on the fully enclosed leg).
the Good news is, the I.V. was disconnected (he still has a hep-lock, just in case he needs something else), and he should get the catheter out soon. The Dr. said we should be able to go home tomorrow. Yay
3:00 pm
the catheter is out! He was NOT happy!!! he yelled out, "she's a bad girl!" about the nurse. Now to see how going potty in a body cast will go! JoY!
5:00 pm Success! Yay!
Chloe Raum
I bet Liam will be a pro at peeing in a bottle by the time this is all over. He might just find it so convenient that he gives up toilets all together!
We had a BM earlier - that was interesting. Bill said, 'he just needs to hold it until dad gets home from work in the evenings, to help hold him over the toilet!' he's quite heavy and not at a very good angle for sitting up!
5:30 pm
We're Mobile! Liam has a wheelchair that reclines, so we're out of bed and cruising the hallways, and playing in the game room! he remembers the game room - the only positive memories he has of this place...
I made him a pair of shorts earlier in the week. I sewed the front and back together at the legs/crotch and left the sides open and put velcro on them so we could pull them up between his legs over the cast and then he is 'dressed'. I only made one pair so far, so I would know if it was the right size, etc. I might need to make the legs a little bit wider. Otherwise they work quite well. Yay!
This pair is Diego and he's playing baseball.
9:00 pm
The latest exchange: Liam "When can I walk?"
Dad " We'll get out of the Hospital and go home and you'll have the cast for 6 weeks."
Liam "6 WEEKS?!?! I don't want to have the cast for 6 weeks!"
I don't know that he even has any concept of 6 weeks!
Yesterday at 9:57pm
I think the calendar idea is a great one. Thanks Chloe! He loves to put stickers on his charts! (when he potty trained we made him a chart. When he sleeps all night in his own bed... he gets to put a sticker on his chart. I'll get the girls on that once we make the appointment for removal. Fantastic!
19 June 2010
6:30 am
Liam - "It's Morning time!" "I want to get up! Can I go to the game room?"
(It's not open yet for the day... he did get daddy to take him for a walk around the hallways)
8:00 am
Ya know, it's just our life - with Liam. Hard, but it's what we do... and as 'hard' as this 6 weeks will be on us, I just have to keep in mind that It's all so much harder on Liam than us.
11:00 am
Waiting for the Dr. from our Dr's office to show up sometime today to hopefully release us! All Liam can say today is: "I want to go home!" "Can we go home yet?"
Did you know you can hide crushed up medicine in ice cream? Thanks dad for that great suggestion yesterday!
It worked the first time anyway - Mint Chocolate Chip! masked any grittiness, and masked the flavor. The second time around... he asked for Vanilla - didn't hide it as well. I don't know if he got a full dose or not. By the 3rd time trying to take the meds by mouth - since the i.v. is out, I wasn't going to try to get him to eat ice cream in the middle of the night – 2:00 am! So we talked and talked about it. He finally agreed to take it mixed in choc milk.
It was not a happy thing, but it had been around 7 hours since he’d had any meds! He is supposed to or can take meds every 4 hours…
11:00 am
Now he's just pitifully whining about going home! and he even said he wanted his medicine at home - chewable tylnol/motrin... he hasn't had any med's since 2:30 am.
1:00 pm
I had Rebekah stop at the store and buy some chewable tylenol - grape flavored, and bring it to us when she came to visit us today. We gave him one of those and he chewed it up fairly easily. So I guess if he's not hurting enough to 'need' it, I shouldn't be too concerned about making him take medicine for pain.
2:30 pm
Just waiting...
Finally around 11:30 I tracked down our nurse, who had only been in once today thus far, to ask her what our plan was for the day. "Are we just waiting around for a Dr. to come and release us, so we can go home?” Is there anything else we are supposed to do today? The nurse had NO idea, and said she'd find out. Around noon I went to find the nurse to ask if she’d found out anything?
She told me that 'they'd be by around 2:30 or 3:00 p.m. to release us'. Great! we WILL get out of here today! I wonder however if I hadn't gone to ask the nurse after waiting all morning, if anything would have been done at all? We might have sat here into the night, still waiting...
4:00 pm
Going Home!!!! yay!
Labels:
College Road Trip,
Dr. appointments,
Hospital,
Liam,
Surgery
Saturday, May 22, 2010
Birthdays and other days...
We have had 2 birthdays since I last Blogged...
Liam turned 4 and we went to Chuck E. Cheese! He had lots of fun, other than the LOUD singing and cheering for him, and when he refused to have anything to do with Chuck E. and of course that was when all his friends were there. 
The birthday helper put the Birthday Crown on his head, (several times), and he kept pulling it off, with a GET this THING OFF of ME!!!!!! attitude!


When the Birthday Helper lit the candles, Liam refused to blow them out, and didn't WANT anyone else to blow them out either. Finally a couple of sly blows later by dad, myself and possible a kid or two... the candles were out! Then we began pulling some of hte guys off the cake in order to cut it and serve it. Liam got mad and tried to put them back ON the cake. Later... he decided that licking the icing off the guys feet was a pretty cool thing, and then he got to have his new Super hero guys... so he got right to work!
In May we had Sariah's 14th Birthday
and she moved up to the Mia Maid class in our Young Women's program at Church. She had asked me to make her a dress for her birthday present. I worked on it all week whenever I was home and not out doing other things. I had to add 6 inches to the patern length for the dress to fit her long legs... I worked on it saturday, late into the night so she'd have it for her birthday on Sunday. We got up on Sunday - mother's day she put on the dress and it fit... then as my luck would have it... the zipper broke. We had quite a time even getting her out of the dress! Then we had a few emotional moments.
Later he played and hugged Chuck E. and had a grand time. He did enjoy playing games with his tokens.
He also loved opening presents. (Who doesn't?)
One of his favorite friends this year is a little girl named Elizabeth in his pre-school class. I think he's in love... she has been very influential on him this past year. When he comes home from school we will ask him what he did at school today, and he always says, that he played with Elizabeth. She loves pony's - My little pony, and that is what she always plays so that is also what he frequently plays. For Christmas we gave his classroom some dinosaurs, so now he usually reports that he played pony's and dinosaurs. ;-)
Liam's favorite color has been GREEN for a very long time! Recently however, when you ask him he will often tell you his favorite color is pink. Can you guess WHO'S favorite color is PINK?(Elizabeth)
We had talked about Liam's cake and he had asked for months to have a GREEN birthday cake. I managed to incorporate that into the Super Hero Squad theme that we went with, since that is his favorite thing these days... I put colorful swirls inside the cake mix - mostly green until I ran out of green food color. I had worked on the cake the night before his party when he was asleep, so in the morning I asked if he wanted to see it? He looked at his cake all covered in Super Hero squad guys and everything on the green grass icing, and said, "I wanted a PINK cake"!The family went off to Church, and we came home afterward, picked up Sariah and the picnic lunch dad had put together and had a lovely lunch 
at the new greenway, and then the kids wanted to go see the new playground at the new elementary school... we obliged and everyone had a fun time playing on all the new playground equipment! 
After we went back home the kids and dad put together my mothers day dinner. They all pitched in and helped.
Even Liam...
We had a yummy dinner, and an over all really nice day together as a family (minus Rebekah who called me to wish me a Happy Mother's Day).
Other than that, Bill flew up to NY to pack Rebekah up and bring her home from College for the summer. We worked on the house a little bit the weekend before, and moved Liam and his Toddler bed back into our bedroom, and put the trundle bed in his room so Rebekah would have someplace to live for the summer months while she is home. the kids all have one more week of school - they would be out already but we actually had several snow days this winter so the kids have to go extra now to make up for it now. This summer we have some things going on, the big girls will be working, Sariah is taking a trip to Europe. There will also be EFY and Girls Camp, and Hannah will be going to a softball camp for a week and then a police camp for a week, through school. Marissa will continue on with karate. Liam will be getting surgery on his hip in the middle fo June, and that will make all of our lives interesting.
I'll try to do better at keeping up with all our lives and activities.
Monday, February 8, 2010
Primary songs... and Playing games, Trips, and Broken Down Cars
Yesterday afternoon, Marissa was trying to find the new song they have been learning in Primary, in the Song book. It is a New Song that was in the children's friend magazine and they are learning it for the primary program later in the year. http://lds.org/churchmagazines/FR_2010_01_00___09261_000_000.pdf She was sad to know she couldn't find it in the children's songbook. Then, Liam started to sing along with her. He has been learning it in Junior Primary too!
A few minutes later I hear the piano in the other room. Liam had gone in, sat down at the piano, and was 'playing' and singing his new primary song. So sweet!!!
Bill was packing and getting ready to go on a trip (to New Mexico for the next 1 1/2 wks). Liam wanted daddy to play a game with him. He came downstairs, got a game took it up and set it all up ready to play on our bed upstairs. Bill had to come down and get something to pack, and by the time he got back upstairs, Liam was asleep, waiting for dad to paly with him... Poor little guy! Daddy owes him a game when he comes back home.
This morning we had some really pretty snow, too bad it will all be gone by the time the kids come home from school. :-( Sad face!!!
By the time we took dad to the airport to go on his trip, it had stopped snowing completely and in just a short drive (a couple of miles south) you had to look really hard to even see any evidence of snow at all! We left dad at the airpot, and headed off to physical therapy for Liam. We had driven Bill's truck, since my van has tires that are nearly bald, and when he had been out on the roads durring the snow, they were getting pretty slick. I hopped over to the driver seat and off we went... I learned to drive on a standard/stick shift car, and though I don't drive it often I do know how. However,I was having some issues this morning. SOmething didn't feel right. I didn't feel like I had much pick up/get up and go. I wondered if I was shifing to the next gear to soon, or perhaps not soon enough, so I tried both, but nothing felt just right. I had a short drive, but by the time we got near the Physical Therapist office, I was in real toruble. If the drive way had a pass through from the road (Hughes), I'd have made it into the parking lot, but no... I had to go to the light and u-turn to get to their office.
I didn't quite make it! I got stopped at the light, and could no longer get the truck into any gear at all! I had been driving for all of perhaps 5 minutes??? How could I have broken the truck?!?!?! I finally found the emergency flashing lights button, but not before several people got annoyed with me for sitting there through the green turn light! Sorry People, I tried to tell you to go around me! 3 police cars drove right past me and my flashing lights, and eventually a 4th car stopped to see what was the matter. He thought I might have burned out the clutch (which considering I thoguht it was the transmition, might not be such a bad thing...). He did manage to push me out of the turn lane in the road, and onto the median of grass. I called the insurance and they got a tow truck on the way. I managed to talk to Bill before he got on the plane, he said the clutch was probably on it's way out. Oh well...
The good thing was Liam had fallen asleep and so he wasn't annoyed thatwe were just sitting there going nowhere, and the Physical Therapist didn't have anyone else today so, by the time we were able to get across the street and inside we were 30 minutes late (I had called), and she still had plenty of time to work with Liam today. Also, we had a ride home, Amanda was home from school sick today, but I was able to drag her out of bed to come rescue us. Poor girl, really feels horrible, but she sat with Liam (well, she tried to just sit off in a corner) while Liam had physical therapy so I could go outside and wait for the tow truck to arrive an take the truck away.
So, what a start to the week! Hope the truck doesn't cost to much to get fixed, and at least Bill isn't here and we have plenty of time to get it done! I hope that Amanda gets feeling better soon! And that there are no more mishaps in any of our lives while Bill is gone.
A few minutes later I hear the piano in the other room. Liam had gone in, sat down at the piano, and was 'playing' and singing his new primary song. So sweet!!!
Bill was packing and getting ready to go on a trip (to New Mexico for the next 1 1/2 wks). Liam wanted daddy to play a game with him. He came downstairs, got a game took it up and set it all up ready to play on our bed upstairs. Bill had to come down and get something to pack, and by the time he got back upstairs, Liam was asleep, waiting for dad to paly with him... Poor little guy! Daddy owes him a game when he comes back home.
This morning we had some really pretty snow, too bad it will all be gone by the time the kids come home from school. :-( Sad face!!!
By the time we took dad to the airport to go on his trip, it had stopped snowing completely and in just a short drive (a couple of miles south) you had to look really hard to even see any evidence of snow at all! We left dad at the airpot, and headed off to physical therapy for Liam. We had driven Bill's truck, since my van has tires that are nearly bald, and when he had been out on the roads durring the snow, they were getting pretty slick. I hopped over to the driver seat and off we went... I learned to drive on a standard/stick shift car, and though I don't drive it often I do know how. However,I was having some issues this morning. SOmething didn't feel right. I didn't feel like I had much pick up/get up and go. I wondered if I was shifing to the next gear to soon, or perhaps not soon enough, so I tried both, but nothing felt just right. I had a short drive, but by the time we got near the Physical Therapist office, I was in real toruble. If the drive way had a pass through from the road (Hughes), I'd have made it into the parking lot, but no... I had to go to the light and u-turn to get to their office.
I didn't quite make it! I got stopped at the light, and could no longer get the truck into any gear at all! I had been driving for all of perhaps 5 minutes??? How could I have broken the truck?!?!?! I finally found the emergency flashing lights button, but not before several people got annoyed with me for sitting there through the green turn light! Sorry People, I tried to tell you to go around me! 3 police cars drove right past me and my flashing lights, and eventually a 4th car stopped to see what was the matter. He thought I might have burned out the clutch (which considering I thoguht it was the transmition, might not be such a bad thing...). He did manage to push me out of the turn lane in the road, and onto the median of grass. I called the insurance and they got a tow truck on the way. I managed to talk to Bill before he got on the plane, he said the clutch was probably on it's way out. Oh well...
The good thing was Liam had fallen asleep and so he wasn't annoyed thatwe were just sitting there going nowhere, and the Physical Therapist didn't have anyone else today so, by the time we were able to get across the street and inside we were 30 minutes late (I had called), and she still had plenty of time to work with Liam today. Also, we had a ride home, Amanda was home from school sick today, but I was able to drag her out of bed to come rescue us. Poor girl, really feels horrible, but she sat with Liam (well, she tried to just sit off in a corner) while Liam had physical therapy so I could go outside and wait for the tow truck to arrive an take the truck away.
So, what a start to the week! Hope the truck doesn't cost to much to get fixed, and at least Bill isn't here and we have plenty of time to get it done! I hope that Amanda gets feeling better soon! And that there are no more mishaps in any of our lives while Bill is gone.
Tuesday, September 29, 2009
We're off to NY...
O.K. so we've been planning this trip for 20 years! Bill's 20 yr reunionfor West Point is this weekend. Most of the people we will see there, we haven't seen since he graduated, we got married and moved on with our lives. They say that the Army is a small thing, and especially members of the Church in the Army...however, we have never until just this last year had anyone we knew from a previous duty station, live where we live at again. So, it has been many years since we've seen most of these people. We have a few friends that we've kept in touch with and even seen on rare occasions over the years, but for the most part, it will be the first time since graduation that we've seen his class mates.
I'm a bit nervous, and excited to see some people again. It's been a long time wince we've had the chance to catch up with old friends. AND, as an addition to all of that, we are staying with one of the families I nannied for, again. Bill hasn't seen them in abt. 14 yrs. I did get to see them last year when I went, but it will be good to see them again. We are going a day early and spending a day in the city, and we are going to see Phantom of the Opera! I' so excited! I've always wanted to see that one, but never got to. (we took a friend to see a show once, but she wanted to see Cats, and even though we'd already seen it... we went to Cats).
I am however sllightly worried about Liam, and pray that all will be well for him and for all who will help care for my kids while we are away. I worry about him daily now, and pray always that he will not have another incident, and we'll be able to stay on top of things, with the 'frequent' endoscopy, and appointments we'll have over the years, and we won't have an Emergency, like last time. On the other hand, this is now just life for us. Does it mean we should put the rest of life on hold, always, just so that we can be here personally to 'watch' every move he makes, 'in case' something happens? Honestly, if we did that, we'd all have to be hermits, and never leave the house and pad all the rooms, make him live in a plastic bubble in order to 'protect' him, and that wouldnt' be good for anyone!
Sometimes I worry that I am being a little too 'flip' and irreverant of the situation, but on the other hand, sometimes, you either have to laugh or else you'll cry. He's over all a healthy 'normal' (whatever that is!) 3 yr old little boy! He or any one we know could fall and hurt themselves, or get in some sort of accident, at any time. How is that so different? We can't live our lives in fear! We just have to keep moving forward to the best of our abilities...
And so... we're off to NY. (wish us all luck, and say a prayer or two, for my boy, and my peace of mind...).
On another note: I have never traveled so much in my life (since I was young anyway). I feel like I've taken so many trips this past calendar year... I'm sure it's a fluke, and the partying will have to come to a stop eventually... ;-)
I'm a bit nervous, and excited to see some people again. It's been a long time wince we've had the chance to catch up with old friends. AND, as an addition to all of that, we are staying with one of the families I nannied for, again. Bill hasn't seen them in abt. 14 yrs. I did get to see them last year when I went, but it will be good to see them again. We are going a day early and spending a day in the city, and we are going to see Phantom of the Opera! I' so excited! I've always wanted to see that one, but never got to. (we took a friend to see a show once, but she wanted to see Cats, and even though we'd already seen it... we went to Cats).
I am however sllightly worried about Liam, and pray that all will be well for him and for all who will help care for my kids while we are away. I worry about him daily now, and pray always that he will not have another incident, and we'll be able to stay on top of things, with the 'frequent' endoscopy, and appointments we'll have over the years, and we won't have an Emergency, like last time. On the other hand, this is now just life for us. Does it mean we should put the rest of life on hold, always, just so that we can be here personally to 'watch' every move he makes, 'in case' something happens? Honestly, if we did that, we'd all have to be hermits, and never leave the house and pad all the rooms, make him live in a plastic bubble in order to 'protect' him, and that wouldnt' be good for anyone!
Sometimes I worry that I am being a little too 'flip' and irreverant of the situation, but on the other hand, sometimes, you either have to laugh or else you'll cry. He's over all a healthy 'normal' (whatever that is!) 3 yr old little boy! He or any one we know could fall and hurt themselves, or get in some sort of accident, at any time. How is that so different? We can't live our lives in fear! We just have to keep moving forward to the best of our abilities...
And so... we're off to NY. (wish us all luck, and say a prayer or two, for my boy, and my peace of mind...).
On another note: I have never traveled so much in my life (since I was young anyway). I feel like I've taken so many trips this past calendar year... I'm sure it's a fluke, and the partying will have to come to a stop eventually... ;-)
Saturday, September 19, 2009
Sick little boy - Pic's (long)
When Liam was moved out of PICU - and moved onto the ped's floor - he was allowed more visitors. He loved when the family visited. Bill bought him some new games and books to keep us busy during the time in the hospital. This is a game of UNO - Moo! an UNO game for smaller children. It's very cute!
Liam was finally able to eat something - an all liquid diet - on Monday night after not eating anything since Friday evening. Sariah is helping get a drink of Gatorade. Here is his 'SOUP'. He was so disappointed, there were NO NOODLES in his soup! What kind of SOUP is that?!?! Poor boy!
We took Liam's favorite stuffed animal - his Panda Bear - with us to the hospital. The girls brought him some other favorites of theirs. Nuzzle puppy is Sariah's special doggy. The other little puppy doggy was given to Liam by a nice volunteer at Huntsville Hospital. And lets not forget
that the girls brought him up his COOKIE Monster slippers (he got them from our neighbor - Caleb (Bob)).
When the girls came to visit they thought it was interesting that Liam has been put in 'his' room. The room number matched his birth date - 4(April) 29th.
Here is my sick little boy - his Arm all taped up to the Arm boards to hold it straight so he didn't bend and hurt the I.V's he had in his arm. They left the stickers to hook up the heart monitors even after we got unhooked from them to go to the ped's floor.
Sept 14th 2009 When they came to get us for the CT scan they gave him a wagon ride down to Radiology. It is supposed to make it a bit more fun, however, Liam was unimpressed!
Dad and the boy taking a walk and trying to stretch his legs a little bit - as well as get some activity and a change of scenery. They made it to the nurses station.
He didn't even want to go play in the game room after he walked all that way, he was so worn out.

When Liam had enough energy and as an incentive to get him to let them draw blood, or for him to take med's we'd offer for him to go to the game room with dad. he liked playing the touch screen games. He could do that with his left hand and manage to win, since his right hand was all taped up.

We noticed after the first night he had started retaining fluid a bit. I tried to take a picture of his poor little/big belly, but he wasn't playing my games at that point! He tried to cover his head and turn away from me... ;-( By Tuesday it was so tight and swollen. his belly button was stretched completely flat (almost like a pregnant belly).
The Dr's never seemed to terribly concerned about it, bit we were a bit worried, since we have too vivid a memory of our little guy last time when he had all the '3rd space fluid' (when your organs don't function well because they/you are sick, your body pushes a lot of the extra fluid (and he got a LOT of fluid from all the I.V.'s he had been given) out into the tissues of the body. Last time he literally swelled nearly twice his size! from 7 lbs up to 12 lbs in a week). http://www.west-point.org/users/usma1989/46946/hospital_stay.htm

In this picture you can see some of books and games that we brought in (or bought) for Liam. When the girls came to visit, Life didn't necessarily stop just because we were in the hospital for the week. Sariah is working hard on her schoolwork. (with a little help from dad)

Tired and worn out after a long day... (or night).
Tuesday night he was able to have actual food. He decided he didn't want noodles (in soup). I ordered whatever I could think of that was soft. He liked the rice and ate a lot of it, the mac n' cheese was pretty good. The mashed potatoes??? He claimed that they were "Yucky Stuff!"
Wednesday morning was pretty much spent just waiting around to get the ultrasound of his belly and to go home.
Liam likes Dinosaurs, and The Land Before Time Movies have become his favorite. We had a friend bring us a few movies to borrow, and The first Land Before Time was one of them. He would watch it and watch it, We have the first one at home, but have been able to borrow the others from the Post Library over the past months. Liam LOVES them. I liked borrowing them from the library, because, then I got a break and we were not 'forced' to watch the same movies over and over again... Well, this hospital stay ended up sending Bill to the store and he was able to buy every single one of the episodes (there are 11) for Liam. We watched all of them but one, at least one time if not more (along with a few other different movies, occasionally), but when you are trapped in bed, and can't do much, and you are so miserable... movies help to pass the time! When the nurses come in and wake you up at 2 am, to take your blood, the movies help calm you down and get you to fall back to sleep. They were well worth the price (monetarily, as well as mom's dislike of repeated movie watching...)!
We had several visitors come to see us at the hospital, and we received a few nice meals (non hospital food, yay!) from friends, while the rest of the family at home was being fed by the sweet sisters of our ward. Liam got some nice coloring books and crayons from friends, and a cute Get well soon balloon from his friend Katie - Thanks so much! He likes them now, even though he didn't show it at the time...
We noticed after the first night he had started retaining fluid a bit. I tried to take a picture of his poor little/big belly, but he wasn't playing my games at that point! He tried to cover his head and turn away from me... ;-( By Tuesday it was so tight and swollen. his belly button was stretched completely flat (almost like a pregnant belly).

In this picture you can see some of books and games that we brought in (or bought) for Liam. When the girls came to visit, Life didn't necessarily stop just because we were in the hospital for the week. Sariah is working hard on her schoolwork. (with a little help from dad)Life Goes On...
We are home from the hospital. Liam seems to be fine, over all, a bit whiny and clingy, but fine in general.
Liam had a Dr's appointment with the G.I. Dr. on Friday. We will have to go back for more endoscopy and banding of more esophageal varicose veins, over time. It is all a play it by ear situation... we will go back again (for outpatient treatment unless something comes up during the procedure, and he ends up back in-patient) every 2-3 months or 6 months, or whatever we determine over time for the next however many years. We’ll have to keep an eye on him, and somehow allow him to be a regular kid and play like he always has (he’s a wild man!), and if we ever see any signs of bleeding, vomiting or bowels, we need to take him in immediately! That is quite scary to me, and yet, I can’t tie him down... (last night he bumped his chest against the table at dinner, and cried and said it hurt. It makes me wonder if it is ‘sore’ because he just had all the trauma to it this week, or will it continue to be tender as long as it is vulnerable?).
Will I be freaking out whenever he wants to play rough? Will he be able to take karate classes like his dad had earlier suggested? What if he got hit or kicked in the chest? I do not want to become an overbearing, overprotective mother, but how can I not? This week he is on a soft food diet, but honestly even after that... he could scrape an enlarged varicosity in his esophagus, by not chewing his food carefully enough. He could cause himself serious injury by eating a chip! how am I going to get through this?!?
On we go... Bill was supposed to have left for a trip on monday morning last week, but with Liam in the hospital he postponed his trip. We came home from the hospital on wednesday, and early on Thursday, Bill left for NM. He will be gone for a week. Kids have projectds to work on for school, I have Childbirth classes starting back up (I was supposed to have the 1st class last week, but put that off while we were in the hospital), I have mom's approaching their due dates, choir...
and LIFE goes on.
Liam had a Dr's appointment with the G.I. Dr. on Friday. We will have to go back for more endoscopy and banding of more esophageal varicose veins, over time. It is all a play it by ear situation... we will go back again (for outpatient treatment unless something comes up during the procedure, and he ends up back in-patient) every 2-3 months or 6 months, or whatever we determine over time for the next however many years. We’ll have to keep an eye on him, and somehow allow him to be a regular kid and play like he always has (he’s a wild man!), and if we ever see any signs of bleeding, vomiting or bowels, we need to take him in immediately! That is quite scary to me, and yet, I can’t tie him down... (last night he bumped his chest against the table at dinner, and cried and said it hurt. It makes me wonder if it is ‘sore’ because he just had all the trauma to it this week, or will it continue to be tender as long as it is vulnerable?).
Will I be freaking out whenever he wants to play rough? Will he be able to take karate classes like his dad had earlier suggested? What if he got hit or kicked in the chest? I do not want to become an overbearing, overprotective mother, but how can I not? This week he is on a soft food diet, but honestly even after that... he could scrape an enlarged varicosity in his esophagus, by not chewing his food carefully enough. He could cause himself serious injury by eating a chip! how am I going to get through this?!?
On we go... Bill was supposed to have left for a trip on monday morning last week, but with Liam in the hospital he postponed his trip. We came home from the hospital on wednesday, and early on Thursday, Bill left for NM. He will be gone for a week. Kids have projectds to work on for school, I have Childbirth classes starting back up (I was supposed to have the 1st class last week, but put that off while we were in the hospital), I have mom's approaching their due dates, choir...
and LIFE goes on.
Sunday, September 13, 2009
Huntsville Hospital...
So, Friday night, Liam started running a little fever. He hadn't napped, so he fell asleep at about 8 p.m.
We were in the middle of Marissa's birthday sleepover party... Around 10 pm Liam, who was asleep in our bed, started gagging a bit, and Bill who was in the room with him, got him up and took him to the sink. He started calling for someone to come. Bill thought it might have been blood, but when I looked, it was soooo dark, I thought he must have gotten into some chocolate. Vomiting blood is just not the first thing that popped into my mind!
He watched T.v. for a little while and then fell back asleep. He woke up around 2 am to potty, and was quite warm again, so I gave him some children's Tylenol. At around 5 am he woke up and started crying and throwing a fit, Bill thinks looking back on it, that he may have not been completely in his right mind even then, as it was really unlike him. Then he started jerking a bit and was sort of unintelligible. I told Bill to turn on the lights, so I could 'see' him. His hands were sort of jerking, and his legs were stiff and straight out. I called our family Dr. and yes, woke her up at 5:20 a.m. After running through everything, she suggested it might have been a febrile seizure, which is quite common among children his age, and more so with boys than girls. She suggested we watch him, but make sure he is conscious, can respond to us, and that it is also normal to sleep after a seizure. So, that is what we did.
Liam spent most of the morning snuggling or sleeping in someones arms, while I finished up with the party stuff. The birthday party girls left at 10:00 a.m. and shortly afterward, Liam started fussing again, and then sent into a similar seizure type activity, getting stiff and his hands shaking, and eyes sort of rolling back in his head. Afterward, he went into the deep sleep again, but he was absolutely pale! He had NO color in his face, and his lips were white! IT was very frightening. I decided it was time to take him in...
Amanda, Sariah and I took off with him and we went first to the urgent care center right outside our neighborhood. We got inside with him and they told us they just couldn't do anything for a child with seizures there, and we needed to take him to the E.R. in town. This time I held him in my arms, while Amanda drove us to Huntsville Hospital. He had some color at that point, and was a bit responsive, but was still so out of it. I kept monitoring his pulse and breathing all the way as we drove to make sure he was still doing o.k.
We pulled up to the ER and we got out and I left Amanda to park the van. We were actually taken right back, and only had to sit in chairs in the ER waiting room for a moment. We were back in a room before Amanda even got parked and came inside. I asked the guy at the door to please bring her back to me when she got inside. We found out later they usually only let two people back with a patient, but since they were my children, they allowed them both back. At first they were quite upset, and crying, and I was amazingly together - my heart was pounding in my chest and I felt shaky, but I didn't cry at all. The girls helped as we gave the report about his health history.
They ended up needing a urine sample so they had to catheterize him, and he also had to get blood drawn and an i.v. started. The I.V. took forever, since he was so dehydrated at that point. They had to stick him at least 4 or 5 times to get the first needle in. They tried to draw blood but he just had so little to draw, it was clearly not good. They started the I.V. bolus to hydrate him and later were able to get the second I.V. line in, and it worked much better and they were able to get the blood they needed to run the tests. All this time, the girls were very helpful trying to help hold him down, gently but firmly so that he didn't' fight. Liam cried which made Sariah cry, she is still very sensitive to him and worries anytime he gets sick, that he will 'GET SICK' and here we are! Anyway, after a while, the girls were helping to hand stuff to the nurses, and picking up after them, and they were doing a great job helping out. The nurses all commented on how much help they were! and that they should train to be nurses...
The E.R. Doc had also asked me if he had had any diareah or anything unusual. I then recalled that on Thursday or something he had had a BM that had been very dark, almost Tarry looking. I didn't' give it a whole lot of thought at the time, as kids eat various things and then they will have a BM that is a strange or unusual color... So the Dr. also ordered a stool sample. They got that, and put it on the slide. They put the stuff on it and it immediately turned bright blue, meaning there was definitely blood in his stool. They ordered a CT scan and abdominal x-rays.
They got things ready and were going to admit us upstairs into the Pediatric ICU. I was actually amazingly calm throughout all of this. I guess, even though he was quite sick, they seemed to be giving us answers and talking to us more than they had when we went through the 'mystery diagnosis' 3 1/2 yrs ago with him. It had been so scary that time, as he had been so small - just 10 days old.
As we were about to be moved from the E.R. up to the PICU; Liam threw up again. It was thick and black, but definitely blood. They told us his hemoglobin levels were down to 4. (normal is 12). So they had us set up and he got a blood transfusion when we got upstairs. Dad and Brother L. arrived shortly after we arrived up in PICU. Liam had been asking for his daddy all day so far. (several times during the 2 1/2 hrs we'd been here). Dad and Bro. L gave Liam a blessing. Dad, mom and Liam stayed, and Amanda and Sariah gave hugs and kisses and then drove home with Bro. L. Later The girls came back with a change of clothes and some sweats to sleep in, and some toiletry items. I had sent home a partial list of a few things I needed, but they did a great job of thinking what we'd need immediately.
Liam had the pulse oximeter on his finger, a blood pressure cuff (on his ankle since his one arms was already immobilized), all the heart electrode leads to monitor heart rate, and breathing, then he had the I.V. going with a bag of fluid, and a bag of blood hooked up to two separate iv's and his little arm taped up and immobilized on a board thing. Along with all of this he has had a low grade fever most of the time we've been here. He has been pretty miserable and slept a lot, but he did get a bit more animated after he started to get the IV fluid and the blood transfusion. We knew he was coming around when the Dr. was standing talking with us, and I was sitting on the end of his bed. Liam told me to move, I couldn't figure out why, but then realized the t.v. was on the wall behind me, and I was blocking his vision and was in his way! He wanted to watch Hannah Montana that was on the t.v. ;-)
Well, it's been a long couple of days: Sunday he was doing better, and no longer critical, he was released out of PICU and able to go out to a regular room on the pediatric floor. That way he could have more visitors (ie:his sisters could some and dote on him all they wanted...) (the PICU Dr. even said that was definitely one of her considerations to releasing him to the ped's floor). There were/are plusses and minuses to that. Having been through this part of the Hospital once before, we knew that it was great news, as it meant he was doing so well, but also that we would have to deal with the staff. There is comfort in the continuity of care, of having basically one (or limited) care givers. They know the history, they know what they have been doing for you so far, and so can build on that base. When you are out on the floor, you have to deal with multiple care providers, interns and students. You have countless people coming in and out of your room, often in a large group. They ask irritating questions, such as, "what has he eaten recently?" or "How is he eating?" when he has NOT been ALLOWED to EAT Anything for several days!!! Just the mention of food in front of him is rough, since you have to tell him no he can't have anything, because someone else has brought it up in front of him? (Bill and I had been taking turns going out of his room to eat, so that we didn't make him feel bad, and want food he couldn't have!)
It is aggravating to have to retell his whole medical history every time someone walks in the room, since they have NO idea who he is or what his situation is and what his treatment is or should be!
Liam, doesn't always warm up to new people in new situations very well. For that matter, it often takes a while for him to warm up to people he knows! SO... here we are in this new environment where it is quite scary, and mostly horrible, since he has been poked and prodded, probed and annoyed. You have each new nurse or student, and each new set of Dr, and their entourage, of students, that comes in the room and expects him to talk and interact and be happy to see them or something! Liam has basically shut down or tried to ignore when this parade comes through his room. He doesn't look at them, more often than not he frowns, and often cries. Some of them have shown a bit more compassion than others, and we appreciate them! Others, we want to string up, or possibly draw and quarter...
The first day he got the two IV's in his little arm, and all the other yucky things that he had to go through. At least whenever they needed MORE blood from him for this test or that, all they had to do was to get it through one of the i.v. lines already in place. By Monday, that was no longer working. They had to get blood from a vein directly. Well, this is like a world wrestling federation wrestling match! I have generally been laying on the bed half on top of him trying to help hold/pin him down. Bill has had to help hold his arms or legs to keep tehm from flailing or kicking, and at least two nurses have to work on it. Along with all of this, he is screaming, in hysteria, that "you can't do this to me!", "STOP! You're Hurting me!" Owie, owie, owie!, etc. etc. It is awful! I understand that they need some of these tests, however, sometimes, I think it is still just to 'check' a box on a list somewhere, and doggone it! If you don't have your BEST person come to the room to do this to my kid and get him on the first stick, instead of after a minimum of three sticks for everything he's had done, I think I am going to LOSE it!
This morning they wanted another blood draw, to make sure his platelets were up and that his clotting was good before doing the procedure. The nurse in the middle of the night comes in and mentions to me, during one of the countless times they came in to take his temp, or get his Blood Pressure, that they had it scheduled for 2 a.m.! WHAT?!?!?! I asked how long it would take to get the results back, she said it would depend on who was in the lab, etc. but average, an hour. I said, His procedure today wasn't scheduled until around NOON! couldn't they wait until a more humane hour of the day to do this? especially since he was actually sleeping through, most of the BP and Temp checks. She was able to put it off until about 5 am, but still... Of course somewhere around 3 am, they decided his temp was up, and that he needed tylenol or motrin. Now, he's had a fever low grade, sometimes higher than others, since we got here, and he had up to this point only had tylenol or motrin administered twice. But this time all of the sudden he 'required' it right now! While he is sound asleep at 3 in the morning! SO, we got to wake him as they are trying to shove it down his throat, (squirt it, into his mouth), and he is fighting and spitting it out. Not so pleasant either.
The blood draw was horrible! They are telling us that the UAB Dr's (in charge of the Ped's floor) want two more blood draws from him (one today/tonight, and one int he morning). However the G.I. Dr. who did his actual procedures, told us he doesn't require any more at all. He told us he'd try to talk to them, but I don't know that it will do that much good. We can try to refuse, but it might get ugly.
Anyway, we have been through all sorts of crazy emotions! Fear being at the top of the list! I have been amazingly able to hold it together this time. I really like the t.v. show House, where people with strange illnesses come in and he and his team of Dr's try to figure out what the mystery diagnosis is to treat them or cure them or whatever it is. I however, really do NOT enjoy living an episode of the mystery illness show!
The original thought was a gastrointestinal bleed. Well, even that being the case, they had to find the reason for the bleed in the GI tract. The GI Dr. figured that if it was lower GI the blood wouldn't have made it's way back up to the upper GI tract to be able to be vomited out. Although he only vomited the two times, it was clearly (he thought) an upper GI bleed.
Saturday, until they thought they had a good idea what was causing the bleeding, and they didn't see any more fresh bleeding, they didn't want him to eat or drink anything. His poor little mouth was dry and his lips were getting a bit cracked. Bill asked me if I had any lip stuff, and the only one I had, that I had grabbed out of the van while we were on our way into the hosp, and I put it in my pocket was a lightly tinted frosty pink. We used it a few times on him since his little lips were so dry. After he threw up in the ER, Sariah got him a wash cloth to wash off his mouth and teeth, etc. When we were up in the PICU room, he asked for something to chew on. Several of us had been chewing gum, so I hoped that wasn't what he was referring to. He doesn't usually chew gum (hasn't figured out how to NOT swallow it yet). It occurred to me that he was chewing on things
Sunday evening, Liam was finally able to eat something, albeit, only a clear liquid diet. He hadn't eaten anything since sometime Friday afternoon. He had fallen asleep before we got the pizza for the birthday party girls. Bill asked him if he wanted soup to eat. When the 'soup' arrived and it was just broth and didn't have any NOODLES in it, Liam was pretty unhappy! Poor little guy! He did try to eat some of it, with his sisters encouragement, however, it was so strong and salty, that he really didn't eat very much of it, and he even started coughing, from drinking in the salt. Poor kid. He wanted food so bad!
Monday morning Dr. Mc did an endoscopy. Liam had a slight bit of sedation through his IV line, and the procedure to take pic's of his upper GI and stomach, took only about 4-5 minutes. What it showed, were viscosity's, of the esophagus. It was in actuality one of the things he was looking for, although we were really hoping it was just a bacterial infection that had caused an ulcer somewhere and would be an easy fix with some antibiotics and some antacids.
He surmised that the esophageal viscosity's were a result of something called 'cavernous transition of the portal vein'. This would be the lesser of the possibilities for the problem that he was having. So, he was sent for another C.T. scan, this time of his stomach instead of his head, to determine what the cause of the varices. Then we came upstairs and Liam was finally allowed to actually EAT something. Soft, but food, something he could actually chew on... Mac n' Cheese, Mashed potatoes (or as Liam decided, it was 'yucky stuff'),Rice, ICE CREAM, and Chocolate Milk are however his favorites!
We waited most of the day for the results from the C.T. scan. We asked the UAB Dr. if those results were back, and she said she'd check on them. She called Dr. Mc and he told her he'd come talk to us. When he came over to talk to us about the results, he said he really wasn't sure about them, since none of the three Pediatric Radiologists were working on Monday. He had gotten sort of second hand info that the Radiologist (who generally only works with adults,) didn't think he had seen what Dr. Mc had been looking for. Which was not exactly good news, he tried to lay everything out for us, saying he didn't see how it could be the worse situation with cirrhosis of the liver, which would require care at a bigger medical center either in Nashville at Vanderbilt or in Atlanta. But, since Liam did not have any jaundice or high bilirubin counts, or any other signs, he didn't see how that could be the cause.
Dr. Mc said he had called one of the ped. radiologists at home to have him take a look at the ct scan, but hadn't heard back from him yet, so he really hated to tell us any of this. We told him that we understood that, but that we'd been waiting all day and had sort of pushed him to tell us something before he had all the info he wanted in order to talk to us. While we were talking, he got a phone call from the ped radiologist. He went out into the hallway, to talk. While he was gone, Bill, who had been trying to hold it together all day just broke... he'd been reading on line all day about various scenarios, and he knew what cirrhosis meant, Liver Transplant. Which also could mean a lifetime of worry about rejection, if we even got a liver to be able to transplant, etc, etc. I amazingly felt a little numb, I don't know why, but I just couldn't let myself deal with that as a possibility, until I heard that there were no other possible causes, and solutions. Since Dr. Mc wasn't ready to give in and go with that diagnosis, neither was I.
When he came back in he told us good news: which is subjective, since it wasn't the best news we had hoped to get that morning originally, but the ped radiologist confirmed what Dr. Mc hoped/thought, that is was the cavernous transformation of the portal vein. Basically what he described this to be is that the vein(s) taking blood flow into the liver, is blocked, somehow. A jumbled mass/mess of veins. As a result, the extra blood that was not making it's way into the liver, was being shunted back up to the esophagus, and with that extra blood volume and pressure, the veins in the esophagus expanded. Since the esophagus is soft tissue, there is just not a lot of protection for those enlarged veins, and they can be scraped or scratched by hard foods, or just break open from the pressure on it's own.
What this meant, however, was to go back in and band the viscosity's (under surgery, although for an adult it would be a procedure done just like, and during the endoscopy, but since he is little, the tool to do the banding, is small enough to fit, however, it could compress the airway, and so it needed to be done in the O.R.). What he would be doing was to go in and essentially tie off the vein that was enlarged and cut of the blood supply to it, so that it would no longer be enlarged, and the blood flow would stay where it was supposed to be, and over time the body would self heal and actusally should grow other pathways for the veins to the liver. DUrring his first 10 years this should get better and he should have outgrown it. (We can hope anyway).
There were three varicose veins, but one was large, and the others are still a bit smaller and will have to be done at some time most likely over the next year or so. It is also likely that over the next couple of years he might end up having more varicosities form, and needing them to be banded as well. At least we know some symptoms and idea's to watch for if he has more of these that bleed and will get him to help imediately. The GI Dr. did say it is good that we don't live out in the toolies, so we would be far away from help if we needed it... but on the other hand he didn't act like we should be freaking out or anything.
This morning, after taking blood, which was a horrible fight, three pokes, as I already stated, we saw the UAB Dr, and entourage, and the Dr. wanted two more blood draws, one tonight, and one tomorrow morning. We did ask that IF we had to do it, we requested the Nurse Richard again, since he was so good. However, after the procedure, we talked to Dr. Mc about it. He didn't feel like he needed any more blood tests. He is only the 'consulting' Dr. so he can't write orders, but he can give his oppinions, etc. He did that, but it never got changed in the orders by the UAB Dr's. When the night nurse came on tonight, she talked to us, and we told her that we felt like if the Dr. who actually was caring for him, ie: doing the procedures, and treating him, didn't feel it was necessary to get more blood, then that was good enough for us.
Now we are just hoping that we don't have problems with being released to go home tomorrow.
Wednesday, we are supposed to go home. The Pediatric Radiologist did ask for an ultrasound in the morning, before we leave, so that he has a base line to start with so we have something to follow, as Liam grows and we can see if there are changes.
As we have been going through all of this, I am thankful for family and friends. For everyone who stepped in and helped. It really is wonderful to know I don't have to worry about my other kids, and that everyone and everything is being taken care of. I'm also thankful for those that helped with meals, for my family as well as for us here. I'm also thankful to all those who were so willing to help. I am thankful for modern technology, and the ability of the Dr's to find and fix what is wrong. I am also thankful for technology and for being able to put Rebekah on video phone on the computer so that she can interact with Liam, and sing him songs and try to help him feel better, even though she is far away.
I am so thankful for prayer, and for all the many, many prayers that have been going out for Liam and my family. For family and friends, across the country and around the globe that have been praying for us, and also for those who have put Liam's name on the temple prayer rolls. And for friends of friends or family who have also been praying for my little man!
Well, that's most of the story... I have taken lots of pic's to document this newest adventure in our lives, and one day hope to get some of them put on here.
As for now, we had to plead, beg, fight, cajole and bribe Liam to finally get a dose of motrin into him earlier. It was about an hour process. After which, I told him he could have more ice cream, although he's had several different kinds today already. ;-) He finally took it, and then got to watch more movies, and daddy read him books, and I fed him ice cream! What a life... if only, he wasn't hurting, misserable, and in a hospital!
We were in the middle of Marissa's birthday sleepover party... Around 10 pm Liam, who was asleep in our bed, started gagging a bit, and Bill who was in the room with him, got him up and took him to the sink. He started calling for someone to come. Bill thought it might have been blood, but when I looked, it was soooo dark, I thought he must have gotten into some chocolate. Vomiting blood is just not the first thing that popped into my mind!
He watched T.v. for a little while and then fell back asleep. He woke up around 2 am to potty, and was quite warm again, so I gave him some children's Tylenol. At around 5 am he woke up and started crying and throwing a fit, Bill thinks looking back on it, that he may have not been completely in his right mind even then, as it was really unlike him. Then he started jerking a bit and was sort of unintelligible. I told Bill to turn on the lights, so I could 'see' him. His hands were sort of jerking, and his legs were stiff and straight out. I called our family Dr. and yes, woke her up at 5:20 a.m. After running through everything, she suggested it might have been a febrile seizure, which is quite common among children his age, and more so with boys than girls. She suggested we watch him, but make sure he is conscious, can respond to us, and that it is also normal to sleep after a seizure. So, that is what we did.
Liam spent most of the morning snuggling or sleeping in someones arms, while I finished up with the party stuff. The birthday party girls left at 10:00 a.m. and shortly afterward, Liam started fussing again, and then sent into a similar seizure type activity, getting stiff and his hands shaking, and eyes sort of rolling back in his head. Afterward, he went into the deep sleep again, but he was absolutely pale! He had NO color in his face, and his lips were white! IT was very frightening. I decided it was time to take him in...
Amanda, Sariah and I took off with him and we went first to the urgent care center right outside our neighborhood. We got inside with him and they told us they just couldn't do anything for a child with seizures there, and we needed to take him to the E.R. in town. This time I held him in my arms, while Amanda drove us to Huntsville Hospital. He had some color at that point, and was a bit responsive, but was still so out of it. I kept monitoring his pulse and breathing all the way as we drove to make sure he was still doing o.k.
We pulled up to the ER and we got out and I left Amanda to park the van. We were actually taken right back, and only had to sit in chairs in the ER waiting room for a moment. We were back in a room before Amanda even got parked and came inside. I asked the guy at the door to please bring her back to me when she got inside. We found out later they usually only let two people back with a patient, but since they were my children, they allowed them both back. At first they were quite upset, and crying, and I was amazingly together - my heart was pounding in my chest and I felt shaky, but I didn't cry at all. The girls helped as we gave the report about his health history.
They ended up needing a urine sample so they had to catheterize him, and he also had to get blood drawn and an i.v. started. The I.V. took forever, since he was so dehydrated at that point. They had to stick him at least 4 or 5 times to get the first needle in. They tried to draw blood but he just had so little to draw, it was clearly not good. They started the I.V. bolus to hydrate him and later were able to get the second I.V. line in, and it worked much better and they were able to get the blood they needed to run the tests. All this time, the girls were very helpful trying to help hold him down, gently but firmly so that he didn't' fight. Liam cried which made Sariah cry, she is still very sensitive to him and worries anytime he gets sick, that he will 'GET SICK' and here we are! Anyway, after a while, the girls were helping to hand stuff to the nurses, and picking up after them, and they were doing a great job helping out. The nurses all commented on how much help they were! and that they should train to be nurses...
The E.R. Doc had also asked me if he had had any diareah or anything unusual. I then recalled that on Thursday or something he had had a BM that had been very dark, almost Tarry looking. I didn't' give it a whole lot of thought at the time, as kids eat various things and then they will have a BM that is a strange or unusual color... So the Dr. also ordered a stool sample. They got that, and put it on the slide. They put the stuff on it and it immediately turned bright blue, meaning there was definitely blood in his stool. They ordered a CT scan and abdominal x-rays.
They got things ready and were going to admit us upstairs into the Pediatric ICU. I was actually amazingly calm throughout all of this. I guess, even though he was quite sick, they seemed to be giving us answers and talking to us more than they had when we went through the 'mystery diagnosis' 3 1/2 yrs ago with him. It had been so scary that time, as he had been so small - just 10 days old.
As we were about to be moved from the E.R. up to the PICU; Liam threw up again. It was thick and black, but definitely blood. They told us his hemoglobin levels were down to 4. (normal is 12). So they had us set up and he got a blood transfusion when we got upstairs. Dad and Brother L. arrived shortly after we arrived up in PICU. Liam had been asking for his daddy all day so far. (several times during the 2 1/2 hrs we'd been here). Dad and Bro. L gave Liam a blessing. Dad, mom and Liam stayed, and Amanda and Sariah gave hugs and kisses and then drove home with Bro. L. Later The girls came back with a change of clothes and some sweats to sleep in, and some toiletry items. I had sent home a partial list of a few things I needed, but they did a great job of thinking what we'd need immediately.
Liam had the pulse oximeter on his finger, a blood pressure cuff (on his ankle since his one arms was already immobilized), all the heart electrode leads to monitor heart rate, and breathing, then he had the I.V. going with a bag of fluid, and a bag of blood hooked up to two separate iv's and his little arm taped up and immobilized on a board thing. Along with all of this he has had a low grade fever most of the time we've been here. He has been pretty miserable and slept a lot, but he did get a bit more animated after he started to get the IV fluid and the blood transfusion. We knew he was coming around when the Dr. was standing talking with us, and I was sitting on the end of his bed. Liam told me to move, I couldn't figure out why, but then realized the t.v. was on the wall behind me, and I was blocking his vision and was in his way! He wanted to watch Hannah Montana that was on the t.v. ;-)
Well, it's been a long couple of days: Sunday he was doing better, and no longer critical, he was released out of PICU and able to go out to a regular room on the pediatric floor. That way he could have more visitors (ie:his sisters could some and dote on him all they wanted...) (the PICU Dr. even said that was definitely one of her considerations to releasing him to the ped's floor). There were/are plusses and minuses to that. Having been through this part of the Hospital once before, we knew that it was great news, as it meant he was doing so well, but also that we would have to deal with the staff. There is comfort in the continuity of care, of having basically one (or limited) care givers. They know the history, they know what they have been doing for you so far, and so can build on that base. When you are out on the floor, you have to deal with multiple care providers, interns and students. You have countless people coming in and out of your room, often in a large group. They ask irritating questions, such as, "what has he eaten recently?" or "How is he eating?" when he has NOT been ALLOWED to EAT Anything for several days!!! Just the mention of food in front of him is rough, since you have to tell him no he can't have anything, because someone else has brought it up in front of him? (Bill and I had been taking turns going out of his room to eat, so that we didn't make him feel bad, and want food he couldn't have!)
It is aggravating to have to retell his whole medical history every time someone walks in the room, since they have NO idea who he is or what his situation is and what his treatment is or should be!
Liam, doesn't always warm up to new people in new situations very well. For that matter, it often takes a while for him to warm up to people he knows! SO... here we are in this new environment where it is quite scary, and mostly horrible, since he has been poked and prodded, probed and annoyed. You have each new nurse or student, and each new set of Dr, and their entourage, of students, that comes in the room and expects him to talk and interact and be happy to see them or something! Liam has basically shut down or tried to ignore when this parade comes through his room. He doesn't look at them, more often than not he frowns, and often cries. Some of them have shown a bit more compassion than others, and we appreciate them! Others, we want to string up, or possibly draw and quarter...
The first day he got the two IV's in his little arm, and all the other yucky things that he had to go through. At least whenever they needed MORE blood from him for this test or that, all they had to do was to get it through one of the i.v. lines already in place. By Monday, that was no longer working. They had to get blood from a vein directly. Well, this is like a world wrestling federation wrestling match! I have generally been laying on the bed half on top of him trying to help hold/pin him down. Bill has had to help hold his arms or legs to keep tehm from flailing or kicking, and at least two nurses have to work on it. Along with all of this, he is screaming, in hysteria, that "you can't do this to me!", "STOP! You're Hurting me!" Owie, owie, owie!, etc. etc. It is awful! I understand that they need some of these tests, however, sometimes, I think it is still just to 'check' a box on a list somewhere, and doggone it! If you don't have your BEST person come to the room to do this to my kid and get him on the first stick, instead of after a minimum of three sticks for everything he's had done, I think I am going to LOSE it!
This morning they wanted another blood draw, to make sure his platelets were up and that his clotting was good before doing the procedure. The nurse in the middle of the night comes in and mentions to me, during one of the countless times they came in to take his temp, or get his Blood Pressure, that they had it scheduled for 2 a.m.! WHAT?!?!?! I asked how long it would take to get the results back, she said it would depend on who was in the lab, etc. but average, an hour. I said, His procedure today wasn't scheduled until around NOON! couldn't they wait until a more humane hour of the day to do this? especially since he was actually sleeping through, most of the BP and Temp checks. She was able to put it off until about 5 am, but still... Of course somewhere around 3 am, they decided his temp was up, and that he needed tylenol or motrin. Now, he's had a fever low grade, sometimes higher than others, since we got here, and he had up to this point only had tylenol or motrin administered twice. But this time all of the sudden he 'required' it right now! While he is sound asleep at 3 in the morning! SO, we got to wake him as they are trying to shove it down his throat, (squirt it, into his mouth), and he is fighting and spitting it out. Not so pleasant either.
The blood draw was horrible! They are telling us that the UAB Dr's (in charge of the Ped's floor) want two more blood draws from him (one today/tonight, and one int he morning). However the G.I. Dr. who did his actual procedures, told us he doesn't require any more at all. He told us he'd try to talk to them, but I don't know that it will do that much good. We can try to refuse, but it might get ugly.
Anyway, we have been through all sorts of crazy emotions! Fear being at the top of the list! I have been amazingly able to hold it together this time. I really like the t.v. show House, where people with strange illnesses come in and he and his team of Dr's try to figure out what the mystery diagnosis is to treat them or cure them or whatever it is. I however, really do NOT enjoy living an episode of the mystery illness show!
The original thought was a gastrointestinal bleed. Well, even that being the case, they had to find the reason for the bleed in the GI tract. The GI Dr. figured that if it was lower GI the blood wouldn't have made it's way back up to the upper GI tract to be able to be vomited out. Although he only vomited the two times, it was clearly (he thought) an upper GI bleed.
Saturday, until they thought they had a good idea what was causing the bleeding, and they didn't see any more fresh bleeding, they didn't want him to eat or drink anything. His poor little mouth was dry and his lips were getting a bit cracked. Bill asked me if I had any lip stuff, and the only one I had, that I had grabbed out of the van while we were on our way into the hosp, and I put it in my pocket was a lightly tinted frosty pink. We used it a few times on him since his little lips were so dry. After he threw up in the ER, Sariah got him a wash cloth to wash off his mouth and teeth, etc. When we were up in the PICU room, he asked for something to chew on. Several of us had been chewing gum, so I hoped that wasn't what he was referring to. He doesn't usually chew gum (hasn't figured out how to NOT swallow it yet). It occurred to me that he was chewing on things
Sunday evening, Liam was finally able to eat something, albeit, only a clear liquid diet. He hadn't eaten anything since sometime Friday afternoon. He had fallen asleep before we got the pizza for the birthday party girls. Bill asked him if he wanted soup to eat. When the 'soup' arrived and it was just broth and didn't have any NOODLES in it, Liam was pretty unhappy! Poor little guy! He did try to eat some of it, with his sisters encouragement, however, it was so strong and salty, that he really didn't eat very much of it, and he even started coughing, from drinking in the salt. Poor kid. He wanted food so bad!
Monday morning Dr. Mc did an endoscopy. Liam had a slight bit of sedation through his IV line, and the procedure to take pic's of his upper GI and stomach, took only about 4-5 minutes. What it showed, were viscosity's, of the esophagus. It was in actuality one of the things he was looking for, although we were really hoping it was just a bacterial infection that had caused an ulcer somewhere and would be an easy fix with some antibiotics and some antacids.
He surmised that the esophageal viscosity's were a result of something called 'cavernous transition of the portal vein'. This would be the lesser of the possibilities for the problem that he was having. So, he was sent for another C.T. scan, this time of his stomach instead of his head, to determine what the cause of the varices. Then we came upstairs and Liam was finally allowed to actually EAT something. Soft, but food, something he could actually chew on... Mac n' Cheese, Mashed potatoes (or as Liam decided, it was 'yucky stuff'),Rice, ICE CREAM, and Chocolate Milk are however his favorites!
We waited most of the day for the results from the C.T. scan. We asked the UAB Dr. if those results were back, and she said she'd check on them. She called Dr. Mc and he told her he'd come talk to us. When he came over to talk to us about the results, he said he really wasn't sure about them, since none of the three Pediatric Radiologists were working on Monday. He had gotten sort of second hand info that the Radiologist (who generally only works with adults,) didn't think he had seen what Dr. Mc had been looking for. Which was not exactly good news, he tried to lay everything out for us, saying he didn't see how it could be the worse situation with cirrhosis of the liver, which would require care at a bigger medical center either in Nashville at Vanderbilt or in Atlanta. But, since Liam did not have any jaundice or high bilirubin counts, or any other signs, he didn't see how that could be the cause.
Dr. Mc said he had called one of the ped. radiologists at home to have him take a look at the ct scan, but hadn't heard back from him yet, so he really hated to tell us any of this. We told him that we understood that, but that we'd been waiting all day and had sort of pushed him to tell us something before he had all the info he wanted in order to talk to us. While we were talking, he got a phone call from the ped radiologist. He went out into the hallway, to talk. While he was gone, Bill, who had been trying to hold it together all day just broke... he'd been reading on line all day about various scenarios, and he knew what cirrhosis meant, Liver Transplant. Which also could mean a lifetime of worry about rejection, if we even got a liver to be able to transplant, etc, etc. I amazingly felt a little numb, I don't know why, but I just couldn't let myself deal with that as a possibility, until I heard that there were no other possible causes, and solutions. Since Dr. Mc wasn't ready to give in and go with that diagnosis, neither was I.
When he came back in he told us good news: which is subjective, since it wasn't the best news we had hoped to get that morning originally, but the ped radiologist confirmed what Dr. Mc hoped/thought, that is was the cavernous transformation of the portal vein. Basically what he described this to be is that the vein(s) taking blood flow into the liver, is blocked, somehow. A jumbled mass/mess of veins. As a result, the extra blood that was not making it's way into the liver, was being shunted back up to the esophagus, and with that extra blood volume and pressure, the veins in the esophagus expanded. Since the esophagus is soft tissue, there is just not a lot of protection for those enlarged veins, and they can be scraped or scratched by hard foods, or just break open from the pressure on it's own.
What this meant, however, was to go back in and band the viscosity's (under surgery, although for an adult it would be a procedure done just like, and during the endoscopy, but since he is little, the tool to do the banding, is small enough to fit, however, it could compress the airway, and so it needed to be done in the O.R.). What he would be doing was to go in and essentially tie off the vein that was enlarged and cut of the blood supply to it, so that it would no longer be enlarged, and the blood flow would stay where it was supposed to be, and over time the body would self heal and actusally should grow other pathways for the veins to the liver. DUrring his first 10 years this should get better and he should have outgrown it. (We can hope anyway).
There were three varicose veins, but one was large, and the others are still a bit smaller and will have to be done at some time most likely over the next year or so. It is also likely that over the next couple of years he might end up having more varicosities form, and needing them to be banded as well. At least we know some symptoms and idea's to watch for if he has more of these that bleed and will get him to help imediately. The GI Dr. did say it is good that we don't live out in the toolies, so we would be far away from help if we needed it... but on the other hand he didn't act like we should be freaking out or anything.
This morning, after taking blood, which was a horrible fight, three pokes, as I already stated, we saw the UAB Dr, and entourage, and the Dr. wanted two more blood draws, one tonight, and one tomorrow morning. We did ask that IF we had to do it, we requested the Nurse Richard again, since he was so good. However, after the procedure, we talked to Dr. Mc about it. He didn't feel like he needed any more blood tests. He is only the 'consulting' Dr. so he can't write orders, but he can give his oppinions, etc. He did that, but it never got changed in the orders by the UAB Dr's. When the night nurse came on tonight, she talked to us, and we told her that we felt like if the Dr. who actually was caring for him, ie: doing the procedures, and treating him, didn't feel it was necessary to get more blood, then that was good enough for us.
Now we are just hoping that we don't have problems with being released to go home tomorrow.
Wednesday, we are supposed to go home. The Pediatric Radiologist did ask for an ultrasound in the morning, before we leave, so that he has a base line to start with so we have something to follow, as Liam grows and we can see if there are changes.
As we have been going through all of this, I am thankful for family and friends. For everyone who stepped in and helped. It really is wonderful to know I don't have to worry about my other kids, and that everyone and everything is being taken care of. I'm also thankful for those that helped with meals, for my family as well as for us here. I'm also thankful to all those who were so willing to help. I am thankful for modern technology, and the ability of the Dr's to find and fix what is wrong. I am also thankful for technology and for being able to put Rebekah on video phone on the computer so that she can interact with Liam, and sing him songs and try to help him feel better, even though she is far away.
I am so thankful for prayer, and for all the many, many prayers that have been going out for Liam and my family. For family and friends, across the country and around the globe that have been praying for us, and also for those who have put Liam's name on the temple prayer rolls. And for friends of friends or family who have also been praying for my little man!
Well, that's most of the story... I have taken lots of pic's to document this newest adventure in our lives, and one day hope to get some of them put on here.
As for now, we had to plead, beg, fight, cajole and bribe Liam to finally get a dose of motrin into him earlier. It was about an hour process. After which, I told him he could have more ice cream, although he's had several different kinds today already. ;-) He finally took it, and then got to watch more movies, and daddy read him books, and I fed him ice cream! What a life... if only, he wasn't hurting, misserable, and in a hospital!
Monday, August 17, 2009
Potty Training...
O.K. I just had to post this one! Liam is potty training. Well, he's basically done, but we still have to help him...
He LOVES wii, so that is what I held out for him to get him to go poopy in the potty, over the summer! It worked! He was going pee on the potty, but had never done the other on the pot, so over the summer, (once we got home from our cruise), I got serious. He couldn't go to pre-school if he wasn't potty trained, I had my motivations also... ;-)
We made potty sticker charts. He got special CAR's stickers that he picked out, if he pooped on the potty, but even that wasn't enough!!! So, I told him no more Wii until and unless he pooped in the potty! That didn't take him long at all! For most of the past month or more, he suddenly becamse quite 'regular' and would go nearly every morning, first thing, and then he would say, "Now, I can play Wii?!?!?!" in this high pitched sing songy voice, WHILE STILL SITTING ON THE potty!!! Too funny! It was a very good motivator.
So about two weeks ago, he had several days of multiple accendents. He was just being LAZY, and was too busy playing Wii, or picking out a movie to watch in the movie closet RIGHT across the hallay from the bathroom door!!!!! So, I said, "NO more Wii, until you have a full week of NO accidents!" He managed to not have once accidnet for the next week, and has begun to play Wii again.
Well, the next thing is... He still wants to remove his pants completely to go potty. He's still a bit short, (he's only 3 after all) and it's just easier to have him sit down, right now. But, he can't spread his knees far apart to hold himslef on the potty with pants around his ankles. I've been a bit woried about him 'needing' so much help when he starts school this week. He doesn't wipe himself either.. (I guess since girls wipe all the time, it isn't as big of a step to have them wipe one thing and then move on to the other... AND they were all trained much before this time frame!!! anywhere from 20 months to 2 1/2 yrs).
I have been trying to help him to learn to put his pants on all by himself! He's getting there, but still 'thinks' he needs help. I guess I am still helping somewhat, if nothing more than a cheer sqaud, as he does such a good job! I also lay them out on the floor in front of him the correct way, so he puts them on right.
So... the point ot this whole post?!?!?! A little while ago - He sits down, picks up his underwear, and starts singing to himself as he is trying to get himself dressed.
"You put your right foot in, you put your right foot out, you put your right foot in... and you shake it all about!"
It was so darn cute, I just had to write it down!
He LOVES wii, so that is what I held out for him to get him to go poopy in the potty, over the summer! It worked! He was going pee on the potty, but had never done the other on the pot, so over the summer, (once we got home from our cruise), I got serious. He couldn't go to pre-school if he wasn't potty trained, I had my motivations also... ;-)
We made potty sticker charts. He got special CAR's stickers that he picked out, if he pooped on the potty, but even that wasn't enough!!! So, I told him no more Wii until and unless he pooped in the potty! That didn't take him long at all! For most of the past month or more, he suddenly becamse quite 'regular' and would go nearly every morning, first thing, and then he would say, "Now, I can play Wii?!?!?!" in this high pitched sing songy voice, WHILE STILL SITTING ON THE potty!!! Too funny! It was a very good motivator.
So about two weeks ago, he had several days of multiple accendents. He was just being LAZY, and was too busy playing Wii, or picking out a movie to watch in the movie closet RIGHT across the hallay from the bathroom door!!!!! So, I said, "NO more Wii, until you have a full week of NO accidents!" He managed to not have once accidnet for the next week, and has begun to play Wii again.
Well, the next thing is... He still wants to remove his pants completely to go potty. He's still a bit short, (he's only 3 after all) and it's just easier to have him sit down, right now. But, he can't spread his knees far apart to hold himslef on the potty with pants around his ankles. I've been a bit woried about him 'needing' so much help when he starts school this week. He doesn't wipe himself either.. (I guess since girls wipe all the time, it isn't as big of a step to have them wipe one thing and then move on to the other... AND they were all trained much before this time frame!!! anywhere from 20 months to 2 1/2 yrs).
I have been trying to help him to learn to put his pants on all by himself! He's getting there, but still 'thinks' he needs help. I guess I am still helping somewhat, if nothing more than a cheer sqaud, as he does such a good job! I also lay them out on the floor in front of him the correct way, so he puts them on right.
So... the point ot this whole post?!?!?! A little while ago - He sits down, picks up his underwear, and starts singing to himself as he is trying to get himself dressed.
"You put your right foot in, you put your right foot out, you put your right foot in... and you shake it all about!"
It was so darn cute, I just had to write it down!
Friday, May 1, 2009
We Have Locks...
But obviously need something more!!!
Liam has gotten out, BY HIMSELF several times in the past week! UGH!!!!!!!!!!!!!
He got out a couple of months ago, and actually went around the corner and a neighbor had seen him escape, (I had the door locked, and chained), and she went after him and headed him back home!
Since then we haven't had too much trouble, until recently. The kids go in and out the door so many times a day, and I try to keep the door locked and chained, but he has figured out how to get out anyway... Last week on Saturday, some of us had gone to help with the day of Service, and Bill was helping a sister move, and that afternoon, when it was just the three younger kids and myself, the girls were playing with the neighbors out front. Liam wanted to go out too, but they didn't want to watch him...
Eventually I sent him into the backyard to play... before too long I heard the neighbors saying Hi to Liam, etc. I went out back and realized he was IN the neighbors yard! I was sort of going crazy trying to figure out how he'd gotten OVER the fence, then realized he'd gone out the gate and the neighbor boy had gotten him and taken him to play in the other neighbors (right next door, through the fence) backyard, where the girls were all playing slip and slide and water fights...
I brought him back in, and reprimanded him, but tried to be nice, and so I took my laptop out in the backyard so I could continue working on what I was doing, as well as keep him company while he played. He still tried to escape the backyard through the gate, but... I tried to tie it closed. After a little bit, he was playing happily, then he went in the house. By the time I got up from where I was at, and tried to get in, the little stinker had locked the back screen door, and I was locked out... and he was was dragging a chair toward the front door so that he could reach to unlock the chain, and make his escape! I called out to him through the screen, and he stopped dragging the chair, and just stood there and grinned at his genius!
Oh MY Goodness!!!!!
Well, I got him to unlock the screen door and let me in, but we have had multiple other exiting moments lately!
One day this past week he was wearing underwear (we're trying... and he's getting better and better at going in the potty... yay!), and we were in the backyard, but he wet his pants. I took them off of him, and went inside to put them in the laundry, and get new pants for him, and before I could get back outside, he had come in the front door! Shirt, shoes and socks, and nothing else! He had gotten out the gate and gone to see Marissa across the street playing with friends, she got him and brought him home to get on some underwear at least...
Liam has gotten out, BY HIMSELF several times in the past week! UGH!!!!!!!!!!!!!
He got out a couple of months ago, and actually went around the corner and a neighbor had seen him escape, (I had the door locked, and chained), and she went after him and headed him back home!
Since then we haven't had too much trouble, until recently. The kids go in and out the door so many times a day, and I try to keep the door locked and chained, but he has figured out how to get out anyway... Last week on Saturday, some of us had gone to help with the day of Service, and Bill was helping a sister move, and that afternoon, when it was just the three younger kids and myself, the girls were playing with the neighbors out front. Liam wanted to go out too, but they didn't want to watch him...
Eventually I sent him into the backyard to play... before too long I heard the neighbors saying Hi to Liam, etc. I went out back and realized he was IN the neighbors yard! I was sort of going crazy trying to figure out how he'd gotten OVER the fence, then realized he'd gone out the gate and the neighbor boy had gotten him and taken him to play in the other neighbors (right next door, through the fence) backyard, where the girls were all playing slip and slide and water fights...
I brought him back in, and reprimanded him, but tried to be nice, and so I took my laptop out in the backyard so I could continue working on what I was doing, as well as keep him company while he played. He still tried to escape the backyard through the gate, but... I tried to tie it closed. After a little bit, he was playing happily, then he went in the house. By the time I got up from where I was at, and tried to get in, the little stinker had locked the back screen door, and I was locked out... and he was was dragging a chair toward the front door so that he could reach to unlock the chain, and make his escape! I called out to him through the screen, and he stopped dragging the chair, and just stood there and grinned at his genius!
Oh MY Goodness!!!!!
Well, I got him to unlock the screen door and let me in, but we have had multiple other exiting moments lately!
One day this past week he was wearing underwear (we're trying... and he's getting better and better at going in the potty... yay!), and we were in the backyard, but he wet his pants. I took them off of him, and went inside to put them in the laundry, and get new pants for him, and before I could get back outside, he had come in the front door! Shirt, shoes and socks, and nothing else! He had gotten out the gate and gone to see Marissa across the street playing with friends, she got him and brought him home to get on some underwear at least...
Subscribe to:
Posts (Atom)