Status Quo

The past two days for Blaise have basically been status quo, which is exactly what we want them to be. Honestly, there's not a whole lot to update. Today, Blaise got the last two iv's out of his hands, is fully switched from iv meds to oral meds, took a bath last night and got the dressings removed from his drainage sites with just regular bandaids. He gained a few grams over night-yay! He had an EKG and an ECHO done today. His xray this morning looked clear again- Amen!! We are currently working on getting the right mix of meds to maintain the correct levels for Blaise. His sodium level is still low, so we are trying to get that to level off. The cardiologist's follow what they call the "Fontan Pathway" for all Fontan kids. Basically this instructs them everything on how to handle these kids. Right now the pathway wants Blaise on two strong diuretics to help keep his lungs free of fluid since that is the biggest complication post - Fontan. Amazingly (seriously, only God is to thank for this) Blaise has had hardly any drainage, so the diuretics are putting him on the "dry" side causing the lower sodium levels. 

Currently, Blaise is scheduled to go home on Lasix three times away as a diuretic, another diuretic I can't remember the name of twice a day, enalapril for blood pressure and an aspirin daily. A few of these he will be on for the rest of his life. 

His diet is incredibly strict, and the doctors and nutritionists have been in several times to go over it with us and make sure we feel comfortable going home on it. He is limited to 25 grams of fat per day total. To put in perspective: a fruit roll up has 4. Butter and oil are hereby eliminated from our house. We have to measure, weigh, and evaluate how much Blaise has eaten of what he's given to make sure he's within his limits. The reason for this diet is so that he doesn't start draining fluid, as fat causes this. 

I'd have to say that going into this we were told that the  minimum time they've seen kids be in the hospital was 10 days, the average maximum a month and to plan on two weeks. We were told a story tonight about a Fontan patient who was here three months draining not too long ago. To think of where Blaise is at is strictly a credit to God and the prayers said. 

Other highlights the last two days were working on physical and occupational therapy. This was started the first day after surgery and he gets a bit stronger each day. We are currently working on holding his shoulders back as he is hunched over compensating from his chest hurting. On Monday he spent nearly a half hour petting Sven, the famous therapy dog at Children's. He was approved to "leave the floor" which meant he could go down to the lobby atrium area, over to the Specialty Clinic Building where we can see the construction work better and outside on the patio. The movement was good for all of us!!