We have had a bit of a rough week...
LB has been cutting his first teeth. This has made him fussy and cranky, especially at night. He has also had some seriously messy diapers (a teething side effect that I remember from our older son, too). It also started to affect his food intake, which with his MCADD is very bad. We were on the verge of calling his specialists at Children's Hospital on Friday night because his intake was down about a third from where it normally is, plus those awful messy diapers. Thankfully, at 2 a.m. when we were contemplating the call, he magically sucked down a full bottle and we thought things were getting better.
On Saturday, his second tooth appeared and he seemed happier. He was having hourly diaper blowouts, but was eating just fine (slightly less than normal, but nowhere near a third less than normal where we start getting concerned) and playing happily. Then, by the end of the day, he was very mad. The diaper issues had caused some pretty angry diaper rash and his tummy was very hard. I could tell he was uncomfortable, so we called the pediatrician who suggested we switch him to the "gentle" version of his formula to help with the gassiness and do some baking soda baths along with a seriously thick coating of diaper rash cream to make him more comfotrable. A quick run to the store before bedtime for the necessary supplies and we were on our way to feeling good again.
On Sunday, the rash was much improved, the diaper messiness had subsided considerably (2 blow outs for the entire day instead of 8!), and his food intake was up a couple ounces from the day before. We definitely thought we were out of the woods.
On Monday, we took the boys to the sitter, but picked them up an hour and a half early so we could take them to the flu shot clinic at the pediatrician's office. Usually when I pick up the boys, their sitter proudly tells me that LB ate 12 ounces and had a great day (she considers it her personal mission to feed the child at least 12 ounces regardless if he's hungry of not...did I mention she is a grandmother? =). Our regular sitter was actually out of town, so her friend was substituting for her for the day. When she came to the door, she looked worried and LB looked terrible -- he had red circles around his eyes and wasn't as happy and smiley as he normally is when I pick him up. She said he didn't have a great day, kept turning away from the bottle on her and had been having messy diapers again. She said he had only eaten 5.5 ounces while he was there.
It was as if someone sucked the air out of my lungs. I rationalized that it was probably just because she was an unfamiliar face and he didn't want to take the bottle from her (even though she is a Grandma of 15 and has plenty of experience with babies!). I made a bottle for him in the car and as soon as we got to the pediatrician, he ate all 4 ounces for me. Both boys got their flu vaccinations and as we were leaving, I asked if our pediatrician was in the office today. The receptionist said he wasn't so I just left it at that. He had eaten, so he was probably ok.
On the way home, I started adding up all the messy diapers, the decreased formula intake and the telling red circles around LB's eyes. My gut told me we needed to call his specialists, just to be sure he didn't need to start on his special sugar-solution formula for a little boost while he was getting over this teething thing (or was it a stomach bug now? how could you tell?). Husband agreed with me, so we called them as soon as we got home.
We reached our genetic counselor first, told her what was happening and she said she would talk to the doctor and get right back to us with a plan for what we should do. The phone rang not five minutes later. She said the doctor was concerned and that we should go to the ER. LB was probably getting dehydrated from all the diarrhea and the decreased food intake wasn't helping. She said he would probably just need to be on some IV fluids for a few hours and they might be able to send us home again.
I gathered a supply of diapers and formula, called a friend to stay with the little man and headed for the ER. Our friend couldn't get to the house right away, so Husband could meet me at the ER after she arrived to play with our older son for the evening. The ER experience wasn't the best, but wasn't the worst either. Our emergency letter that was supposed to get us to the front of the line and into a room with an IV running as quickly as possible didn't quite work out as expected. The guy at the desk and the triage nurse both refused to look at it, instead telling me to show it to the doctor once we were in our room. We were sitting in a curtained room within about 20 minutes (which isn't too bad) and saw the doctor almost immediately thereafter. She looked at LB, read his letter and ordered his special dextrose IV fluid (liquid sugar) along with some lab work. The doctor told me he was slightly dehydrated and that after running fluid for a few hours, he'd probably be able to go home. The unfortunate thing was that the IV fluid didn't arrive until TWO HOURS after we had arrived at the ER. It was a good thing he was only slightly dehydrated. Things could have gotten really dangerous if he was really in metabolic crisis and his IV was slightly delayed by two hours!
LB was a real trooper in the ER. He snuggled with me and took a couple nice naps. He was slightly annoyed by the IV because they had to put it in the crook of his arm (the best vein they could find) and placing it there meant that they needed to strap his arm to a little board to keep it straight. His overwhelming desire to suck on that particular hand got the best of him from time to time and he would get mad, but I was usually able to quickly distract him with a toy or a lullaby. All of his labs came back within normal range, so the ER doc assured us that this treatment would really give him the boost he needed to get well.
Things were going fine and after a couple hours of IV fluids, he was already looking much more alert, with the circles around his eyes disappearing, BUT he still wasn't very interested in eating and then he had this wildly impressive diaper explosion (that we were happy to have happen in the ER instead of in our house where we would have had to clean it up). At that point, they said they were admitting us for the night.
We got to our room around 10:30 p.m. Most of the other kids on the floor must have already been sleeping for the night because the nurses were focused exclusively on us for the next couple hours. I filled out a bunch more paperwork, they set us up with a stockpile of diapers, wipes, blankets, formula and toys. They also asked me if I was hungry, which I was (I had the foresight to pack a PB&J, but had been at the hospital since 4:00 p.m. with only that sandwich to eat since lunchtime), so they brought me a deli sandwich, some fruit and a bag of potato chips which I happily gobbled up.
We slept curled up on the pullout couch since LB wasn't happy in the hospital crib and by sleeping on the couch with me, I could help keep his arm straight so that the IV could continue to flow unobstructed (he could bend his arm slightly even with the arm board, so everytime he did, his IV would stop flowing and start beeping). It was a restless night of sleep for me, but LB slept rather peacefully despite all the nursing checks every half hour or so. He woke up bright eyed and bushy tailed at around 5:30 a.m. and he was literally a brand new kid -- alert, happy, playing, drooling, flirting with the nurses. It was amazing to see the difference from the night before.
Once he was awake, the IV beeping became incessant as he kept trying to use his arm so the nurses made the executive decision to disconnect it. The doctor came in to see us and said that his morning labwork had shown improvements from the night before (he referred to his numbers as "stone cold normal" now) and as long as he ate well and didn't have any more diaper explosions, we could go home after lunch. We stuck to that plan, LB happily drank his bottles as well as munching some cheerios and applesauce (photo below) and sure enough, were headed home around 1 p.m. -- hooray!
I took a little nap that afternoon while Husband watched LB. By the time it was time to go pick up his big brother from the sitter, I felt like our life was pretty much back to normal.
LB was acting fine again on Wednesday, but I didn't want to send him back to the sitter quite yet -- I needed to keep him in my sight until I was absolutely sure he was ok. It was a good thing I did because the messy diapers returned after his morning nap, so we followed up with a visit to the pediatrician who told us that the stomach bug that is going around typically lasts for 10-14 days. The dirty diapers would last a little while longer, but as long as his food intake stayed up, his labs from the hospital indicated that he was getting enough nutrients from his formula (before it was violently expelled from the other end) that he would likely not have to go back to the hospital. His advice was good and the diapers gradually returned to normal over the next couple days. His food intake continued to gain ground until we were back to normal by the weekend. What a relief!
So, our first hospitalization turned out fine. I sure would rather have not had to take him there, but the blessing of his diagnosis is that we know that we have to catch things like this early and act aggressively to prevent him from getting sicker. That's exactly what we did and he bounced back extraordinarily quickly. Honestly, the whole experience was probably harder on his Mommy than it was on him!