Sunday, December 21, 2014

Day 18 Update

Today is day seven for Sam to be off feeds and on antibiotics.  He has had fever on an off throughout the week, but it goes back to normal with Tylenol.  We have spoken with several doctors, nurse practitioners, and now two pediatric surgeons about Sam's gut issue.  They feel pretty confident that he has necrotizing enterocolitis (NEC).  NEC isn't something that can be caught, and the doctors aren't sure how or why Sam has it.  It is an issue in the intestine that causes the intestine to become inflamed, which can lead to a perforation.  When the bowel perforates, the good bacteria that's always in there enters the abdomen or blood stream, causing an infection.  The doctors put him on gut rest to prevent a perforation and to allow the intestines to heal on their own.  NEC usually happens in premature babies, babies that have other significant bowel issues, or babies who have certain congenital heart diseases (not the kind Sam has).  They are able to see a spot on his intestines on the x ray that looks like air built up, causing a part of his bowel to be dilated.  For the first few days this week, they were doing x rays every six hours, and then they moved it to twice a day, and now he gets one just once a day.  He has had two ultrasounds to look for fluid built up, but they haven't shown any areas of fluid, which makes them think there is no perforation.  His condition hasn't worsened, but it hasn't gotten significantly better either.  Generally, babies with NEC either get significantly better after a few days of gut rest (no feeds) or get significantly worse and require surgery.  Basically, Sam's case is an anomaly, and he's confusing the doctors.  We spoke with a surgeon this morning who is ordering a CT scan for tomorrow.  He explained that x rays show a 2D view, while CTs show a 3D view.  The CT will either show that the issue is isolated to the one spot they can see on x ray or that the issue includes a larger area.  If it is isolated to one spot, they will introduce feeds slowly and see how his intestines handle it.  If it includes a larger area, they will do surgery to repair his intestines.  We are praying, first of all, that the CT gives clearer information about Sam's case, and, second of all, that it is isolated, and he can start feeds again soon. This has been a frustrating week for Stephen and me.  On Monday, they said they would hold off feeds for one day, then we were told three, then five, then seven, and then fourteen.  Now that we have some hope of an end of Sam's situation, we feel hopeful there will be a solution.  Sam has acted uncomfortable this week--he cries out when he sleeps, and fusses and cries any time the doctors or nurses touch his abdomen.  It has been really hard as a parent to watch our baby be in pain and not be able to do anything to help.  He is only able to have Tylenol because narcotics can slow down progress in the bowels.  

He does enjoy watching this little soother machine that plays music, nature sounds, and a little light show.

He isn't resting well, which I'm sure can't help his recovery.  On the other hand, he has recovered from open heart surgery great!  Dr. Kao has been by several times, and is very happy with his oxygen sats, blood pressure, and other heart stats.  I am hoping and praying that we get some answers tomorrow!

In other news, my mom brought the girls to see us yesterday.  We hadn't seen them in two and a half weeks, the longest we've been away from them.  We went to Northpark Mall (the busiest place on the planet the Saturday before Christmas) to see the trains exhibit, which the girls loved.

Yesterday, Emory said, "Let's go home."  Yes, let's!  They asked several times to see Sam--they don't allow visitors under 12 during flu/RSV season.  The girls miss their little bro!

Mama, the girls, and I stayed at a hotel last night, which was a nice break from the couch in Sam's room.  This morning, the girls played in the children's waiting area, we ate lunch, and then they went back to my parents.  Maybe within the next week we'll all be together again. 

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