Days 54-59 of hospital stay for Chiron's life

As I mentioned briefly, Chiron took a bonus six-day trip back to the hospital at the beginning of this month.  I took him in because when Paul brought him home from daycare he was really lethargic and his daycare sheet indicated that he really hadn't eaten that day and had spent almost all of it asleep.  My best, medically uneducated guess, was that maybe he had a little stomach bug that we weren't noticing with his GERD and he had gotten dehydrated.  Checked in with doctor and they said to go ahead and take him into the ER where they might give him some fluids.

Chiron and I get to the hospital and he's asleep and so I decide to just leave him in his "bucket" (car seat carrier) rather than move him to a sling and carry him in that way.  We are standing in line to get information to be able to go sit in the waiting room for triage when a nurse walks up to me.  She asked if he's always that pale and I answered no.  She started a sternum rub or something like that and he was not responding.  Other nurse calls back that they have an unresponsive infant and so are bringing him straight back.  My blood pressure starts to rise.  I actually put a hand on him to confirm for myself that he had a respiratory rate.  They rush him back and get into a room.  He's still looking pale.  He's still not responding.  Then as soon as we unbuckled the straps he popped awake.  A picked him out of the seat and he grabbed my fingers and stood on his foot and cooed at the nurses that were standing there.  That's one way to skip a line.

He spit up a Longhorn, way to impress the medical staff in Austin, home of the University of Texas Longhorns

They got the story, examined him and then said they would go ahead and draw some blood and give him some fluid.  Unfortunately, he's awful to start an IV in.  First person tries, no luck.  They get the charge nurse, no luck.  They get the floor supervisor, no luck.  They get someone who apparently is the champion head sticker, no luck.  They call up to the NICU and got one of the nurses and first poke she is in.  And she looks at the amount of blood they need and declares that it makes sense just to do it with a heel stick.

Can you spot all four bandaids from the four attempts before the fifth was successful in starting an IV?

Doctor comes in and says they're going to go ahead and admit him.  In retrospect, I realize they didn't really tell me why.  Apparently he looked off enough to me that I didn't question admitting him. Actually we were told they were admitting him somewhere around stick attempt number two, but we couldn't go up to the floor until the IV was in place.

Asleep after the IV was finally gotten, but before we headed up to the floor.  Very pale.

Get up there and the on call resident tells me that he is severely anemic.  Anemia at his age starts at 11 for hemoglobin and he was 6.8.  She also said that seeing him reassured her because when she saw the number she was expecting a much sicker baby.

They rounded that morning.  They came up with the theory that he had existing reflux that he'd gotten a minor stomach bug on top of and that explained things.  His gastroenterologist came by and said they were going to schedule him for a scope (EGD) the next day first thing in the morning. 

Looking much better with a little hydration

They cut him off from food at 4 am to prep for the scope that was scheduled for 9:30.  9:30 comes and something has come up and so they have to bump him to 3.  They let him eat once right then just to avoid cruelty.  They decide to get some additional bloodwork just for information.  We take him down around two or so to the surgical floor to get started.  Then they declare that his prothrombin time came back to long to do the surgery that day and we go back upstairs. 

His one permitted feed between the two fast periods.  Apparently being deprived of food pushed him to decide to take things into his own hands.

The doctors (it's a teaching hospital) all come upstairs and say he presents oddly.  The "picture" apparently isn't fitting together, but they are going to start with treating the symptoms.  They'd already started therapeutic iron doses and they moved him to the intermediate care unit so they could administer vitamin K.  His gastroenterologist says that it is a really low likelihood, but wants to try him on a trial of Neocate to make sure this wasn't protein intolerance on top of reflux causing malabsorption.  He was not presenting like a protein intolerance kid at all (no mucusy stools, no congestion, has never had an ear/sinus infection and doesn't have dermatological symptoms), but since his big brother did have multiple protein intolerances, seemed worth trying.  I got told to keep pumping though because he was almost certainly going back to breastmilk.

Can we go home yet?

That was Friday.  They said that if he responded well to the vitamin K and iron, they would discharge him Sunday.  Saturday afternoon he pulled out his IV and despite having the charge nurse, an NP from the PICU and the hospital manager all try, they couldn't get an IV started on him.  They declared he could have his last two vitamin K doses as shots.  This also resulted in another move change as he no longer needed to be in the intermediate care unit and so they took him up to the hematology floor.

Why are you waking me up in the middle of the night to change floors?

I was supposed to have left town Friday for a conference, but I had rescheduled my flight to Sunday mid-day.  They drew blood early in the morning of Sunday, but when it came back he was even more anemic (6.1 hemoglobin) and his reticulyte count was worse rather than better, so they decided to do a blood transfusion that afternoon.  I still left.  I knew Paul was competent.  I knew the kid was stable even if in need of medical care.  I knew they had a good plan, but it was still one of the hardest things I've ever done.  I actually semi-cutoff someone at the Parking Spot and ended up in tears as I apologized to him!

Getting transfused.  This is the picture Paul sent when my plane landed.  Did not help with my guilt!

They did the blood transfusion and it was amazing what the impact was on his energy and attitude.  Happy baby with color in his cheeks!

This has rambled much longer than I intended, so I should probably find a conclusion.  He was discharged the day following the transfusion.  They decided that there likely was an element of protein intolerance and so left him on the Neocate.  Neocate and the end of breastmilk are worthy of their own post, and hopefully I'll write it.  We went to the gastroenterologist Monday of this week and he'd gained three ounces that week which is HUGE in a kid who had not gained weight since the beginning of August.  And Monday his hemoglobin was 10.8 and hematocrit was 33.8, so much improved on the anemia front.  They will repeat those tests in three weeks along with rechecking the prothrombin and other clotting tests.  For now, we see no therapeutic reason to do the scope, so we are putting that off as well.

His gastroenterologist seems a bit frustrated and not necessarily convinced that he's got the whole picture completely figured out, but my philosophy is that as long as we can find actions to take that get him back on track to gaining weight and keep his blood from getting out of whack again, that's good enough.

And that's days 54-59 of hospital stay for a 274-day-old boy (as of today).

Feeling much better!  (Big brother is exploring Chiron's temperature using himself as a control)