At the hospital stay continues...

Welp, we're still sitting pretty in the hospital. Unfortunately.

Daylon blood pressure has been in the high 150s/110-ish since surgery. This is obviously high for an adult, more or less a 22 month old. He's on four different blood pressure meds without seeing much difference. The renal team was called up to bat again to help with Daylon's care since the kidneys control blood pressure. An ultrasound of his kidneys was done and it showed that Daylon's kidneys are shrinking. As he gets older, he will quickly outgrow his kidneys (especially if they keep shrinking) and he'll need a kidney transplant. You know that sick feeling in the pit of your stomach? Yeah. I've got that. I am praying, praying that by some miracle something happens and this all goes away, but I know that sometimes these things happen. I just feel so horrible for out little guy. This poor kid has experienced so many bad things. Anyway, they've upgraded (I"m not sure that's the right word) his renal condition from acute to chronic, meaning permanent. The PICU doctors have also been called over to our team again. Hopefully with everyone's help, Daylon's blood pressure can be managed and under control before he has another stroke.

new hospital rooms. Every room in the hospital is identical

 The culture from his lungs came back growing a stubborn bacteria that causes pneumonia. Because he's been off and on antibiotics for months, it's probably helped him from actually getting really sick. He's on a new aggressive antibiotic for that.

each room has a 60 inch tv. There are 6 BMT rooms with this big tv and then two small tvs off to the side of it (I have no clue why) and a fourth tv hidden in a pull out wall attached to the bed.

 The culture on his foot came back growing 3 different forms of bacteria. One was staph, another one is some belly bacteria (I have no clue how that is growing on his foot) and the third is a really rare bacteria that I'm told is not normally seen in this hospital. I can' t remember the name, sorry. Anyway, he's on another oral antibiotic for his foot and we're supposed to continue with the bactraban.

At the one year check up they check for a slew of disease and various other illnesses and Daylon's labs came back positive for Hepatitis C. They ordered a recheck and the machine malfunctioned on the results, so a third was taken yesterday. We should get that back tomorrow. If he does in fact have hep C it's probably from a blood product he received. I'm still hopefully that this is all just a mistake.


  The good news is: Brian's here! Yay!

Plus, Daylon had a neuro psych evaluation yesterday and they said that overall, his abilities register at about 13 months. That's great! I was actually thinking that it was closer to 8 months or so. His gross motor is way behind for his age, but his foot has given him constant trouble his whole life, which would prevent him from walking. His fine motor skill and problem solving skill are almost age appropriate and for me that's HUGE! It shows that the brain damage is being repaired and that he's thinking close to like a kid his age. They also said that with what he understands of language and the babble that he's able to make, his speech may be delayed, but it is coming! Woo-hoo! We're beside ourselves with this news! Now, we just need to make him healthier!

 This trip has been a lot harder than we anticipated. I was so excited to get his nutrition under control and now there's several new worries to take its place. Daylon is such a brave little guy. He is poked several times a day and he doesn't fight it. He gets test and procedures done and as long as we're close he's okay. Don't get me wrong, he fusses a bit, but he doesn't scream and fight the way I would have at his age. He's such a fighter and I love him so much.



In the hotel the day before surgery



Sometimes, Daylon reminds me of an little old man filled with wisdom. These expressions are why. He sits like this all the time! It cracks me up!