Feeling Crummy

Owen hasn't been feeling well the past few days.  His poor tummy is hurting and he's been puking.  He also has been napping every afternoon and doesn't have much energy to walk.  I hate to see him feeling so crummy after we've had some good weeks.  We discussed in rounds the tummy issues today, the need more frequent Zofran and the change in energy.  The transplant cardio on today basically said we weren't going to increase his Milrinone as he doesn't show any congestions (his liver is at a 2 and he is warm and well perfused).  She also implied that his stomach issues and lack of appetite could be psychological and perhaps behavioral and wanted to know if Psych was involved.  I held it together but firmly said.. it's not behavioral. Oy vey!

He has lost a good amount of weight the past few days and his double chin is almost gone.  He was up to almost 59lbs and is down to 54lbs today.  I can't push his tube feeds like I need to because he feels so nauseated and yesterday I pushed him to the point of puking several times.  Feeling defeated.  Thankfully he drinks a good amount of free water and today even had some Orange Juice.  I'm following their suggestions of getting 1200mls in him today and we dropped his diuretics to twice a day lasix (dropped diuril and his third dose of Lasix).  They seem to think that will help his tummy issues.  I still think it's the Milrinone.. tomorrow we will discuss further.

The good news is that his Neutropenia (or ANC) has increased to a Normal level and we are starting him back on his second antirejection med!!  That is huge!!  His Hemocrit and Hemoglobin have increased as well.  Instead of starting him back on Cellcept, we are going with Myfotic which is supposed to be easier on his GI track.

Tonight we gave him another dose of Zofran and I'm going to get up every hour tonight and push a little bit of tube feeds since he hates to be hooked up to the pump. Anything to help him feel more comfortable and tolerate his feeds.  Poor guy.

Oh.. I almost forgot that today was the FIRST DAY OF THIRD GRADE!!!  I had planned to get a super cute photo of him in his yellow gown and backpack going for a walk, but it didn't work out.  We did get some homeschooling in .. math, reading, science and history.  The hospital teacher came by today and said he was too busy but he'd try again tomorrow.  Sounds like he may only get like 40 min of school a week which is so insane.  I'm going to call the school district tomorrow to see if they have the resources to send a teacher to the hospital to work with Owen the allotted four hours a week he got at home.

Logi had fun at the mall playplace.  I can't wait until the weather cools off enough that he can actually play outdoors.  He loves to wave at me when I call and say "Ma".  Oh I miss home.

Tomorrow is a new day.  Pray that Owen finds relief and that his team will be open minded and make good decisions tomorrow.  We continue to wait...