Day +103

since my last update, we've been to the er 3 times. we still have the same problem and still no one knows what is going on. our first trip to the er was the same friday that we were discharged. max started vomiting again and we expected a fever so we walked over to the hospital around 9pm. At about 2am we asked to go home since the fever never came and Max was already feeling better. Then on Sunday, Max had a fever in the morning and off we went again. The fever bought us a two day admission, even though it went away on its own and Max was feeling pretty good. Then we had a lovely thanksgiving break during which my family came to visit. Roman and I even went home for a couple of days to buy a washer/dryer set and visit friends! Yesterday everyone left and at 10:30ish Max started throwing up again. At 2 he had a fever, we went to the ER and 5 hrs later were back on the BMT floor, cranky and sleep deprived. Today, the speech therapist stopped by and we tried to feed Max solid food, which he has been completely uninterested in for the last few weeks. I'll put up the pictures from this traumatic event tomorrow or later tonight.
our engraftment went down to 76%. f.

Day +93

We're back at RMH! yay! hopefully, no more trips to the ER. its good to be "home."

Day +90

It's day +90 and we're still doing ok. Our engraftment level from friday is 88%, which isn't perfect but i was so scared it was going to be significantly lower that when i heard 88, i was really thrilled. I guess everything is relative. We did stop the cyclosporine today, so now we wait for what happens. So far, nothing has happened, but we're hoping for the engraftment to go up in the next few weeks. We were told that first it will go down some more, and then they expect it to rise again. I really hope so. Also, I hope we don't have to deal too much with GVHD because that would be unpleasant to say the least. As I was writing this Max woke up, I tried giving him some more milk and he threw up like crazy. i'll update later.

update:

i guess really its day +91 now that it's 6 am and we're still awake. After he threw up I called the BMT doctor on call and he said to just keep watching him and try to get him to hold down some water. Max didn't even want to drink the water. Also, he pooped what looked like diarrhea so I called the bmt on call and we decided that Max should go to the hospital. So off we went to the ER and sat (not in the waiting room, but a private room) and waited for the RN, then for the resident doc, then for the supervising doc, then for the rn again, then for them to reach the BMT docs. While we were there, Max pooped what looked like the pears he ate earlier. Seriously, the poop was a cream colored purree. The RN took samples of his blood and his weird poop. Max was given fluids at 2 am, and at 4 am he finally got his stress dose of steroids. Around the same time he finally spiked a fever of 38.3. At 4:30 am I noticed Max was feeling slightly better because he started sucking on his binky, something he uncharachteristically hadn't done since he started feeling sick. Then he got tylenol for his fever, and an antibiotic for any infection he may have. Finally, almost at 6, we were sent up to the BMT floor to our room, where we will stay for some days until we get to the bottom of Max's episodes.

I did speak to the BMT doc here in inpatient and he also believes its steroid withdrawal, but we'll see what grows in the cultures.

Good Morning and Good Night!

Day +88

We just had an amazing weekend, thanks to daddy for coming and spending two whole days with us! We are still weaning the cyclosporine and hoping that Max doesn't get any GVHD. I wish I had some engraftment results to post here but we don't have any. Strangely, when the docs called the lab they were told that the lab never got Max's blood specimen on Monday! Either the nurse never took the blood, or maybe it was lost in transit, or maybe the lab lost it. Yes, I was furious because now we haven't gotten a number for 2 weeks. Who knows what we have now!?!? They did confirm that they got the specimen on Friday and will rush the results so we'll hopefully know on Tuesday. I really hope Max's engraftment is still decent. Max's other numbers are good.

Day +82

We're still inpatient, but hopeful that we could leave tomorrow or wed. All only wait of Max's cultures are still negative and I think they only wait five days for something to grow so I guess we're clear. Max still has diarrhea though, and hopefully its due to the antibiotics that he's been on for the last few days, but hopefully a stool sample can go out tomorrow to see what may grow in it. He got his IVIG today instead of tomorrow, since we're here anyways, and because of the benadryl that came with it, Max slept for 3 hrs.!!! It was the best sleep I had in days!
As far as engraftment goes, Dr. Davies plans on reducing the cyclosporine down to zero in the next two weeks. Hopefully that will increase our engraftment and not cause too much GVHD. Max is crawling now and pulling himself up to sitting by his crib rails!!! He's growing up so fast, I can't believe it.

Day +79

This morning still none of the cultures have grown anything, and now the dominant theory is that Max was going through steroid withdrawal. It has all the same symptoms that Max had and as soon as they gave the hydracortisone he felt better. So now we'll be getting steroids until Max starts making his own. Just in case there is some infection, they're still giving him antibiotics. Also, Max's engraftment level fell again to 94% and they're planning on decreasing the cyclosporine today, but dr. davies wants to do it gradually so that Max doesn't get GVHD. This worries me, because I wonder how far she's willing to let his engraftment fall before using more drastic measures. I also wonder if it won't be too late and we would lose our engraftment all together. Also, since we're in the hospital, I was woken up several times last night because our night nurse woke Max up every time she came to do vitals and whatever else. Not a good night in that respect. But Max is doing ok still so I'm quite happy with that.

Here are his numbers from this morning:

wbc - 4.4
rbc - 3.14
hgb - 9.7
platelet - 276
anc - 3.6

have a good day everyone.

Day +78

We're back on the BMT floor after spending last night in the PICU. Yesterday, Max was nauseous and I brought him to the clinic to be looked at by some professionals to see if he was ok. While there he got really pale and spiked a fever. Also, his blood pressure began to drop so he was admitted right away to the PICU. None of his tests came back yet, so we don't know what went wrong, but the doctors think he may have a bloodstream infection so they're giving him some antibiotics to treat whatever it may be. I'll try to keep this updated, but for now, Max hasn't had a fever since last night's spike and he's been keeping his bp up on his own. He's also been playing again today, so we're taking it as a good sign.

Day + 75

We went to the hospital for labs because Friday's results weren't all that great. His wbc went down to 2.7 and his cyclosporine level also was way too low. Our wbc went back up today to 3.5 and his platelets are at 289 and anc at 2.47. (yay!) Also his cyclosporine level was much better so no changes to his meds today. We do have an infection called C. Difficile and one of the symptoms is a lot of poop. We're taking antibiotics. We just got rid of Max's steroids so it sucks that we have to add another med to replace but I hope we'll be done with these in 10 days. Also, Max's blood pressures have been good and now that he's off of the steroids maybe we'll get rid of his blood pressure med too!