Day 8

Day 8 

Tuesday, August 7th

Well this stay has most definitely been full of ups and downs, and praise God are downs really are not that bad.  They are hiccups and bumps in the road but so far nothing major.  This mornings chest X-ray showed more plural effusions (the build of of fluid in the cavity between his lungs and chest bone) but he wasn't draining very much.  So, they tried flushing the line and then pulled 90 mls out of him!  Seemed that the chest tube was a little blocked, but now it is fixed and working again... which is a good thing!  

All snuggled up after the shivers

His blood work also showed his IgG levels (am antibody that helps with immunity) were low due to the drainage so they wanted to help replenish it with an IVIg (an IGg product from human plasma) treatment.  The reasoning for this is to lower the risk of infection while his numbers are low (please Lord let us stay infection free!!!).  Unfortunately, with blood product there is always the risk that the body will react and reflect...which Stephen did.  They preventatively gave him tylenol and Benadryl before the treatment, but about a 3rd of the way in he began to shiver uncontrollably =(  They then had to stop the treatment and give him an extra dose of Benadryl which put him right to sleep!  

At this point I honestly don't know how far out we are from going home.  I don't think the doctors know either.  We were on track for getting out of here quicker than expected when the first pulled the chest tubes on Saturday, and now if is looking like a minimum of another week.  From what we can tell the first thing that needs to happen is to get these pleural effusions to stop.  They added another medication to relieve some of the pressure in the Fontan to see if that helps.  If they exhaust all means of mediations, diet, etc then the last resort is a cath lab procedure.  We are by no means at that point, but we are aware of the possibility.

Then there is the question of the pacing.  His old cardiologist, Dr. Davis, stopped by again and I asked him his opinion on the percentage that he thinks it will get placed this visit.  He said we are at about a 75% chance he will need it before we can leave...boo!  I mean, again, it is not the worst news in the world, but it is also not the best.  It is obviously better to not need it, but is better to have it if it is needed. That would then mean another surgery (praise God they wouldn't have to go through his sternum again) and more healing/recovery time...though it should only tack on a few extra days in theory.

Walking the birthday girl her balloon

So that is where he is at physically.  Please, please , please pray for him to remain free form infection this entire stay, but especially right now with his immune system compromised.  And continued prayers for these effusions to leave and for his sinus rhythm to come back and stay!!!

Aside from the physical side of things, today was a good emotional day for our little guy.  He woke up smiley and playful.  He did SO great on his first walk.  It was actually a little girl in our units 5th birthday and he wanted to deliver her a ballon so I went down to the gift shop and bought a pretty awesome unicorn!  He then walked it over to her and we wished her a very happy birthday.  Later on, during her walk, she stopped by to say hello.  These kiddos sure are precious!!!  So if you think about it pray for sweet little Mags too!  She has already been here for 3 weeks and we are praying she can go home soon!

Stephen still isn't too up to playing with toys, but has been able to get some new apps and play games on his tablet and watch movies.  We are letting him dictate what he can handle, but you can tell this chest tube is a big pain.  On our previous LEGO hunts in the unit he would be able to reach out and pick up the figurines...now he just lets us know where they are and we get them.  But he still loves hunting for them...so that is good!  I actually just had to order a few more and have them sent to the Ronald McDonald House b/c he gets a new one every time he goes on a walk...and then he when he is feeling really good he keeps asking to walk and I was running out of new ones!  But I am happy that they are helping him to get up and move that fluid around!

Due to the late afternoon Benadryl nap he just fell asleep at 11pm...so I am going to wrap this up and get some rest myself.  Continued prayers to remain infection free, for pleural effusions to stop, and for his heart to pace itself would be wonderful =)  God is able!