Hello from Hope 2

Saturday April 26th, 6 days post Fontan, we finally made the move to the 2nd floor of Advocate {Hope} Children's Hospital. Although we were technically "floor" status we were up in the PSHU


Saying bye to one of our favorite cardiologists in the PSHU Dr. VanBergen

 because there were no rooms available downstairs for two days ! The move was tough on Jasiu since he still has the two chest tubes (more on that later), oxygen, pulse ox and two iv's and in 6 days we accumulated about 6 bags of "stuff" that had their own wagon for transport.  The room on 2 is private, as in we don't feel like we are in a fish bowl as in the intensive care unit, one wall/ door is glass because the patients usually require constant 24 hour care in the PSHU post op and for 6 days we had zero privacy besides a curtain that I could close half way when I attempted some shut eye during the night shift.  Before we made our way down, we had to get vitals done, than we go downstairs and again, vitals, weight, and get settled. This wore our little man down and he took a long nap. His mood was still quite gloomy with a few smiles few and far between.

This night Jasiu spent the night with dad and I got some much needed time with Emily and I finally slept in a bed for the night. It was quite difficult to let go of my overly obsessed psyche and allow Joe to take over. I have had full trust in him of course and they did great. I called it their boys night in. Theywatched some hockey and Elmo and went to sleep. In between vitals every 4 hours, iv meds and pull out sleeper sofa,  I'm sure he got some shut eye.

I woke up to a very fun picture of my boy smiling and playing with his toys. When I got here after church, Jasiu was eating some fruits and all smiles and giggles. They had a great time with dad. It brought tears of joy to my eyes that after a week, despite the chest tubes, he is finally in a better mood. This kid continues to amaze me with his strength.  Dad left, we had some lunch and a small bottle of milk and Jasiu is out for his nap. 

The foot has to be hanging out between the rails,
probably why that IV barely works

Medically Jasiu is doing well, but he is still draining fluid from his chest tubes at 6 days post op he is still draining fluid from his lungs and chest cavity. There was only a small decrease over the last two days. The plan was to hopefully remove them tomorrow if he was draining only minimally but I think that might be a long shot after I saw last night's total numbers. We definitely do not want to remove the tubes too soon because if the fluid is not done accumulating around his lungs and heart this could be draining in the body and detrimental to his recovery. Also it is much more difficult on the baby to put the tubes back in if needed than to keep them in until they are really ready to be out. On the good side though, Jasiu's mood is good that means we are managing his pain very well. He is on Motrin around the clock every 8 hours and on Lortab (Tylenol with Codeine) every 4 hours but we have been able to stretch him to every 5-6 hours and seems to be tolerating it well. This one makes him drowsy and sleepy so we are trying to see if he is hurting less and less to slowly wean this one out of his routine and system. To help with the fluid removal Jasiu is on three different diuretics and one of those is still admninisterd through the iv for quicker effectiveness.  Hopefully by the time we come home we can cut one out.

Until then we will hang out at Hope continuing to heal and get back to ourselves.