Day +60...for real!

A Melt my heart moment: look who smiling just because Mommy is talking!

  
Remember how in my last post I said I couldn't believe sixty days had passed? Well, that's because they hadn't! It was only day 58! LOL! All the weeks in the hospital blur together and I have a hard time remembering where one ends and the other begins! Oh, well. :)
   Things around here have continued to be dicey, but, in a much nicer room. :) On Sunday morning Brian got the kids dressed for church, hair and all, by himself (this is huge for him!...and me! I'm such a control freak about their hair), so I could have a relaxed room when the doctors came through. Thankfully, Dr. Tolar came in alone to evaluate Daylon. I showed Dr. Tolar the picture of Daylon looking straight ahead and he was thrilled. Really, he seemed genuinely excited. Actually, when he was walking out the door he asked me to email it to him because, "Daylon gives (him) so much pride." I thought that was sweet. Anyway, back to the story, I told Dr. Tolar that I know it sounds crazy, and I have no medical background to back it up (unless you can't the 5 years I was dedicated to watching "ER" in the 90's) but I think dialysis is making him sick. The only thing I could find online, was from a nurses handbook that said that if there's a fever of 101.5 or higher a couple of hours after dialysis it could be an allergic reaction to the dialyzer. I had the nurse look back on the type of dialyzer used and there hasn't been any real change. Now, I know Dr. Tolar doesn't know what's wrong, the Nephrologist is clueless, and when he was back on 5C, the PICU team had no idea. Dr. Tolar said that I have proven to him several times that no one knows Daylon better than me, so he was willing to take a shot.

He's grasping!

 
Daylon didn't receive dialysis on Sunday and didn't get a fever. He's heart rate didn't drop below 150 and his soft spot was still sunken, so I think he was still recovering from Saturday. When I walked over to his crib in the morning he smiled and was overall, more alert than he has been. I was able to work with him on grasping and tracking and by the end of the day he could swat at a toy while sitting up (in the therapy chair) if I helped him support above his elbow.  He did have some withdrawl issues, but nothing too, too bad. Well, except for insomnia. He was up until 4:30am this morning again and these nights of 3 hours of sleep is beginning to catch up with me.

Getting cocky!...Two hand grasp!!

  Today, dialysis started bright and early. He's so close to his ideal weight, if not under, that dialysis wasn't needed for weight control. Although, he's making urine, it's not considered "good urine" because it doesn't contain creatinine, potassium, etc. It's pretty much just fluid. Dialysis not only removes the extra fluid but also, the chemicals in his body that can become toxic if at too high a level. A few of his levels were at a scary high level, so they were quick to get things moving. While dialysis was setting up, Daylon got an echocardiagram done again to make sure his heart is functioning properly and that his hickman (which is also his dialysis line) hasn't pushed an infection into his heart causing the high fevers post dialysis. They were also going to check on his new heart murmur. We haven't heard anything back yet, so I'm thinkin' no news is good news. They only had a goal of 200cc today for dialysis and Dr. Tolar ordered a series of blood tests to be done during dialysis when the chance of finding a potential infection is higher. So far, once again, everything has come back negative. Agh. Please pray that if it is an infection, they will find it soon.
  After dialysis, his fever was back. It was up to 104.5F, his face beet red, he was gasping for breath, pulse 200, the whole bit. Today, Rachel (the nurse) asked if she could give him two doses of Benadryl just in case it is an allergic reaction to something from dialysis. He conked out from it, well, probably that, dialysis, and the fever. It's nice to see him comfortable though. Respiratory Therapy came in and gave him a breathing treatment, and upped his oxygen levels so he's no longer gasping. I'm sure sometime tonight they'll put them back again.  With the help of some Tylenol, a cooling blanket, ice packs, and luke warm water being poured on his head, his fever is at 101. Whew! Another potential seizure avoided! 

A bit of a smirk

  In happier news, since today is Daylon's "Day+60" they pulled out a ton of pulled to check for his current engraftment state. Dr. Tolar asked me this morning to "remove a significant amount of dressings at his next bandage change."
  I replied, "Oh! I already did!" I was so excited to be on the same page as him! "I have the dressing on both arms down an inch from before." I'm beaming by this point.
 "Yes, I noticed" he responded, smiling "Can you take them off?"
 Uppp. There goes my smile, and instead I just stand there with my mouth open. We had a nice little chat/debate :) We agreed that this week, it was okay to remove from his thighs to his knees and from above his elbows. I'm a nervous wreck and I haven't even done it! He told me every mom has battled with him, but what's the point of doing the BMT if you're not going to remove them? Well, he's got me. That's a good point. He said that one of his patients is 3 yrs post transplant and there isn't a sore on him, but his mom won't remove the dressings. Hmmmm. It's just that 60 days seems early and we haven't even gotten the results back yet to see if his body is producing the laminin. He said that Daylon looks good though, and I agree. I guess we're testing the waters! I'll post pictures tomorrow night after his bath.
  Please pray for Daylon's skin, that it won't blister and tear too badly, if at all. Please also pray that they'll be able to figure out what is going wrong after dialysis and that his kidneys will soon start functioning properly so that they can minimize how often he gets dialyzed. Thank you all for you're love and support. We're in awe everyday when we read your comments, when the mail is delivered or are stopped in the streets. Thank you for helping us to be lifted up in our trials. We love you! Sweet dreams.

the two towers I have to lug around when Daylon and I are on the go in his room...or anywhere really