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!
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! 
He also loved opening presents. (Who doesn't?)
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.
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).
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