Baby steps (around the hospital!!)

Noah continues to improve, liver-wise, then get worse other-wise.  It is kind of frustrating.  We got the news that the cultures they did a few days ago came back postive for c. Difficile.  Again.  Crazy - this is the third time since August that he has had this!  So now he is back in isolation- everyone is all gowned and masked whenever they come in here, so as not to infect the other kids on the ward.  Hopefully the nurses and doctors have already been washing their hands the last few days; I wouldn't want any of the other kids to get it, although Noah isn't suffering too badly compared to the last couple of times he had c. Diff. 
His temperature was fine during the day, but then he spiked again at bed time.  Hopefully the gravol and morphine he just got will help him to sleep well for a while.  Right now his heart rate is the lowest I have seen since we arrived - it is 114 beats per minute. It is supposed to be 60-100 and it was at 130-150 most of this week and last.  It started going down yesterday and today it has been in the range of 120-130, so that is better.  It will be so good when he doesn't have to work so hard...
His weight is down to 33.6 kg, so he has just a little over 2 kg of fluid left in there, which, if my math is correct, is about 2 Litres. I am going to assume, however that he will have lost quite a bit of his own weight and that there is probably more fluid than that, and that his own weight, sans fluide, will be quite a bit less than the 31.5 kg he was on the Friday before this all started.  I am going to guess he will bottom out at about 28kg.  He is so thin.... 
They have had to change things up a bit because his Peripheral IV wasn't in properly anymore so they had to take it out.  The nurse tried to give him Gravol after he was sick this morning but it was just leaking under his skin and stinging quite a bit, so she stopped it and just took the IV out.  Now since he only has his VAD, it will take a bit of figuring to make sure he can get all his meds and transfusions. Some things, like Defibrotide can't be given at the same time as anything else, so for example, the continuous Ondansetron has to be stopped when he is getting it, but Defibrotide takes two hours to run through, so they have to give him gravol or something else so he doesn't get sick while getting the defibrotide.  And red blood cells take 4 hours, so if he needs hemoglobin tomorrow, it will be a challenge to make sure he doesn't miss any of his other meds. It was easier when he had two IVs, because they could just run things that aren't compatible in different lines.  If two drugs aren't compatible, they basically turn to cement in the line, and probably in the person, too, so it is best to have two IVs, if a person is getting a lot of different meds.  If Noah ends up needing transfusions tomorrow, they will likely put in another IV, so he can have his blood and his defibrotide and not miss a dose. 

The best thing that happened today is that Noah got out of bed and walked down to Melanie's room on the next ward and back!  He pushed a wheelchair, so that if he needed a break he could sit down right where he was, and I pulled the IV and the oxygen tank.  He did great! He needed to rest part of the way there, and once we got there, but he made it all the way back without needing a break. He walked a loop around 3B once before bed, too. The doctors and the physio have been telling us that he needs to be upright as much as possible so that the fluid can be pulled down by gravity, and that one of the best ways to get rid of "pleural effusion", or fluid in the lungs, is to get up and walk.  So he did. He is determined to go home ASAP, which could be next Friday.  We will see.  Hopefully he doesn't get too stiff from walking so he can do it a few times a day.  Though now that he is in isolation, he may be limited to where he can go, if at all.  Hmmm, another question for the docs. I'll have to add it to my list.....

We had a nice visit with Klaas Kort and Glenn Bandstra today and they brought us some wonderful cards made by individual students as well as a HUGE card from the gr, 10 class - it is awesome, thank you, it is hanging up on the wall (illegally with tape) - and from the gr 1 class. A lot of the grade ones wrote some pretty hilarious made up jokes, like, "why did the baby cross the road? To get to his mom!" (of course...!) And, "what did the cow say to the pig who was eating? You are eating like a pig!"  Hee hee! They are so cute! Thank you Christa and Jonathan for the cards and also Makayla and Anneka.  I also received a wonderful gift of Starbucks cards from the staff, which is delightful, thank you very much!  I absolutely love Tazo tea, so now I can drink it to my heart's content! 
I think I slept fairly well last night, but I went to sleep too late.  Things seem to be heading on that same trajectory tonight, so I should really head to bed, or I will be getting sick too.  Again, thank you for your prayers, please continue to pray that the fluid leaves Noah's lungs and also that the c. Diff clears up quickly.
Sleep well!