One step closer

Yesterday afternoon a bed finally opened in the step down unit so we packed Max up in a new crib and wheeled out of the CVICU. I sincerely thanked Dr. Asija and team for taking care of Max and being pivotal in his turn around last week. Each week a new attending takes over and I believe Dr. Asija was determined to get Max on the right cardiac path in the least invasive manners possible. She was the one who pushed for the atrial Septostomy in the cath lab when other doctors thought it wouldn't work.  We are thankful that these really smart people choose to work in such a stressful environment. The CVICU at Stanford is a beast and their job is to keep really sick kids alive. We hope to not be back in that place until Max's arterial switch surgery next year.

I finally get to wear clothes!

I

The third floor cardiac unit is a completely different world. We have a nurse but as parents we are expected to take care of Mighty Max. Brad and I give Max bottles of fortified milk (extra calorie breast milk), change his diapers, administer his meds, and take care of his NG tube. Whatever milk that Max doesn't take by bottle is put into his NG tube in his nose to ensure he gets full feedings without getting too tired. The good news is that Max for the most part has been doing a great job of taking bottles. We hope to take him home without the NG tube but we are totally ok if we need to, if that means we can go home sooner. Cardiac kids in general burn a lot of calories because their hearts have to work so much harder that they have trouble gaining weight. Many kids and babies we have met here have either NG tubes or the more permanent G tube. Once Max has his full repair in a year or so his heart should work much more efficiently and hopefully won't need any extra help with feeding.


Cardiac and pulmonary wise Max has been very stable. At times he has still been a little fussy (so much for being the chill third child!). We have been giving him Tylenol as needed but they don't think he is suffering from withdrawals because he doesn't show any other symptoms. The only thing keeping us here now is that Max just has to prove that he can gain weight. He gained 100 grams in the last 24 hours so we are on the right path. Hopefully sometime this week we finally will get to go home!

The goals was to make it home by Luke's third birthday tomorrow (June 13th). Obviously that isn't going to happen so we will celebrate when we finally get home. It's been a LONG 23 days in the hospital and we are ready to see our kids and Walnut Dr. again!