"Very Sick, but Stable"

That is apparently what they have been saying about Noah.  However, he continues to gain fluid and his breathing continues to become more and more labored. He had a chest x ray this morning and we had to go down there with his mega double IV pole, an oxygen tank, the Sat monitor and Noah in a wheelchair, with all his tubes and lines, looking very pale and bald and sick.  It was a crazy caravan with the porter pushing the wheelchair, the nurse with the oxygen tank, I had the Sat monitor and Tom went ahead, opening doors and pushing buttons.  As we entered Radiology through the side door, all heads turned toward us in amazement.  The room was completely silent as we made our way to the room where we waited for the x ray.  I turned to Tom and said," well, we just made all those parents feel a whole lot better..." 
It is totally true. I remember seeing kids with rigs like that and thinking to myself, " Wow, I am so glad my kid just has Leukemia!"  I never thought in a million years that I would be a parent of one of "those kids" But here we are. 
And at least we are together.  Tom arrived this morning, and tomorrow the girls and Tom's mom are flying from Smithers.  It will be so nice to see them. Tom pulled out the proofs for the girls' school pictures and I just started crying - they are so beautiful and I miss them so much.  I can't wait to hug them.....
So thank you to those who arranged for all of that, and took care of all the details (!) the girls are super excited to see Noah, though I don't think they really understand how sick he actually is.  But they are amazing, compassionate girls and they will hopefully be able to sense our peace in this situation.
We have heard from everyone we talk to that it will get better. It will probably get worse before it gets better, but he will be just fine.  I am clinging to that. I don't think Doctors say that kind of thing lightly, especially in a situation like this, so I feel very hopeful.  It is going to be a while, though, and there will be setbacks as well, I'm sure.
Noah had a pretty good day. At the beginning of the day he was on 3L of oxygen, but for the x-ray he had to stand up straight (it was very difficult for him to stand up at all, let alone straight) and take a deep breath.  It was hard for him to do that.  The next one was from the side and I put on an apron and stood in front of him and held his arms up in the air and he took another deep breath- this time it was easier, and by the time we got back to the room he was breathing much better, and he only needed to be on 2L for most of the day.  He is currently on 3L, but will likely be bumped up to at least 4 during the night.  Unless the defibrotide starts really working and he has to pee a lot.  (I'm praying for three times)
Deep breathing is very good for lungs, it reminds them how much they can actually hold, and then they stop doing all these little shallow breaths.  The physio came and gave us this breathing "game" for Noah to try; there is a visual incentive for him keep breathing through a tube and keep a little duck in the right place. It is hard to describe, and it is hard to do, I hope he will try it more wholeheartedly tomorrow.

He was very upset this afternoon and evening because the Kidney Docs have decided that he should be taking in considerably less than what he pees out. They came up with a formula: he can drink the same amount he pees out  minus 100 mL, unless he gets a transfusion, which adds to the amount you would subtract.  For example, this afternoon he peed out 180 mL and 200 mL in a four hour period, which meant that he could drink 280mL (180 +200= 380 - 100= 280), except that he got a blood transfusion which constitutes 250mL, so really he could only drink 30 mL, or 2 tbsp.  He cried, and I don't blame him at all. He is super thirsty, but the doctors have decided that his fluid balance needs to be -500mL by the morning, which means he needs to pee out 500mL more than he drinks, which is a LOT! He did pretty well this evening, because he had platelets, so they gave him Benedryl, and he just slept all evening.  I think it is best if he sleeps, because he can't think about how thirsty he is if he is asleep, right?
Well, we had quite a bad night last night - he just couldn't get comfortable and finally i asked the nurse for some Morphine for him and that helped so much, they decided to just give it to him every 4 hours to keep him comfortable. Oh and he has a new eggcrate foam topper for his bed now, too and a different set up for his pillows, thanks to the OT who came today.
I am having a hard time keeping my eyes focused, so I think I should probably stop typing and go to bed.  Thank you for praying for our sweet boy, we appreciate how everyone has supported us and him during this time.
My sister Julie posted this on her facebook :


Julie Holt
is rallying the troops....our nephew Noah NEEDS to start getting rid of the extra fluid...join us in prayer that his body will start cooperating...pray for pee!!!!   

I think that is so funny.  Pray for Pee - our new rallying cry...

Pray for Pee!

Pray for Pee!

Pray for Pee!