Monday, August 23, 2010

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 


Mom to Many said...

I am so glad to see him smirk. What a cutey!
Come on kidneys!

Karyl said...

Hi, I'm Erin's mom. Daylon captured her heart as soon as she met him, and he's been in our entire family's prayers as well. We continue to pray for his daily improvement and that your family is surrounded by God's love and support. We think of Daylon every time we hear "'re adorable,'re so beautiful,'re a cutie, full of charm!" Take care!

Annalien said...

He is looking so much better! I will continue to pray for his kidneys to fully heal so that he can get off that pesky dialysis. Also for his skin. God bless!


Oh I just love pics of Daylon...such a sweetie:) I am sending prayers your way for the healing of his kidneys and his skin being ok :) I know you must be a nervous wreck about not wrapping him!! Hang in there momma he is doing so great! I hope you can kiss his cute little face!!

Angelique said...

Sorry dialysis is still such a bummer. Have they tried giving the Benedryl before dialysis? It's great to see his continued progress and I think his skin will follow the same path.

jandswood said...

Just want you to know I read every day and pray every night for Daylon and the family. I am so excited to SEE and hear what GOD is doing in his life. I pray will pray for him (and you) as you continue to de- bandage him and for you to be able to get some rest. I pray for peace, comfort and strength for all of you as you go through this process.

Jess Edling said...

Look at that smile! I LOVE that smile!

Wow, take the bandages off! That is intense. I am insanely excited though to see just how much tougher Daylon's skin is. Keep the faith Jenn! You have been so strong.

Anonymous said...

So great to see Baby Daylon's adorable face. He is such a blessing. He knows his Mommy and is smiling ( flirting ). It is so great to see him grasping and noticing things. Hope things get better with the dialysis and fevers. We pray that you will be able to get more rest. You are such a wonderful and loving family. Sure was glad your Mom was there to help you, she is such a great lady, we love her and your father. We are praying, praying, and more praying for a miracle for Baby Daylon. He is really strong and he knows Heavenly Father and all of us are praying for a miracle for him and that we love him. We pray for peace, comfort, strength and healing. We Love You Baby Daylon, Keep on going strong.

Myrna & Dwight Bellflower, CA

Anonymous said...

I am LOVING the progress!! God Bless you all! Not sure if there is any relation, but my husband kept have high fevers and shivering episodes right after he received IV Antibiotics through his Port a Catheter. At first they thought it was a reaction to the antibiotics. Then the doctors were perplexed for a while. It would happen and then it wouldn't. When they finally removed the Port, everything resolved. We believe the port was the source of the infection and when they infused, it pushed the bacteria into his heart/blood stream- which caused the episodes of shivering and fevers. Not sure if this is AT ALL related, but just wanted to share. Hang in there. With God- all is possible!

sharon kaye said...

Glad to know there is improvement. Our prayers continue.

unzen said...

Praying hard for his Kidneys to kick in. That fever is awful poor baby. I hope his poles of drugs go down to as it will make moving around better for both of you. So glad he is loooking so good. Love his smiles.

Haley said...

Daylon looks AWESOME!!! This is my first post on here but I wanted to weigh in because I am a dialysis nurse(for adults). I think a reactionto the dialyzer is a real possibility or as the above commented said port infection. Dialyzers come in different materials so it shouldn't be too hard to switch out the type they are using. We use fresenius non reuse dialyzers but also bio dialyzers as well. We also have one patient where before her treatment is started they run 2 full bags of saline (2 liters) through it (instead of just the typical prime, which for our machines are 400ml).

Seriously....he looks amazing! Continue praying for you!

Haley said...

Am-bio dialyzers. But your dialysis nurse would know them as bio :)