Wednesday, January 12, 2011

Day + 202 We're still here...

  I can't believe how long it's been...everyday around here has been packed full of crazy! Between dialysis and Daylon's doctor appointments all being 20 to 30 miles away  (in CA that means up to 90 minutes of travel time one way on a Friday), almost everyday, I'm constantly running late for something. :)

Practicing crawling on New Years Eve!
  Starting this week, Daylon is down to three days a week for dialysis. Yay! Monthly dialysis labs were done yesterday and Daylon's Creatinine was 2.4 (less than .58 is good) and his BUN was 54 (less than 19 is good). Obviously, we're still a bit off from being off of dialysis, but these labs were taken after not having dialysis for two days, so really, it's not too bad. Like I said, "Yay!" :) LOL! Keeping his weight under control has NOT been a problem! His dry weight is 14.2 kg and he's keeps weighing in lately at 13kg. His TPN was next to nothing fluid wise, but since he has started peeing, he lost a lot of weight and is constantly dried out. They actually give him fluid during dialysis. That's a switch! Dr. Buchbinder almost doubled his TPN and he's peeing that out too. On Thursday his newest order of TPN will come and that will have even more fluid and they're upping his protein and lipids (fat). Right now his poor little mouth is so cracked and bloody from being dry. I hope this works!


  A CT scan of Daylon's head was done and we had an appointment with the Neurosurgeon at CHOC a few days later. He said that it looks like about 70% of the fluid is gone from the newest head bleed. There's a line that goes down the center of your brain and when there's too much fluid in your head, the line is bent. Daylon's line, pre-surgery, was moon shaped. It was awful. There's still a shift to his brain but it is straight in parts, so I guess we'll take it. This Neurosurgeon told me that he felt that Daylon's brain damage was really minimal and that he hardly suffered any brain injury at all. Of course, I was thrilled to hear this but I couldn't understand how his diagnosis could be the complete opposite of 15 or so other doctors that looked at his scans. I left a message for Dr. Tolar and he called me back the next morning. He felt that this doctor probably came to his conclusion after watching a healthy Daylon clap and play on his examining table. It would be hard to say that he should be severely handicapped when the only version of him that you've seen is one where he's acting like a normal toddler. He also said that he thinks the others were more dismal for the same reason. They saw him in a coma in the PICU. Life for anyone can easily look grim at that point, I guess. So plan is, he gets another CT scan in a month and if the fluid isn't gone then he gets another Burr hole surgery if we and Dr. Tolar agree it's necessary. Daylon and I would return to Minnesota at that point. As much as I love Minnesota and the wonderful people there, I was kind of hoping to stay in CA until June. Plus, more than any of that, I REALLY want this kid to get a break. Anyone who knows his story the whole way through, knows that he has been through more in his 18 months of life that most adults have. I know he's been through 10 times as much as Brian and I combined.



  There was a confusion on the level to transfuse Daylon last week. CHOC dialysis transfuse at a Hemoglobin of 6, CHOC BMT 7 and Minnesota transfuses at 8. 10 days ago they found out the Daylon's hemoglobin was 7. something and he would need to be transfused. The dialysis people said that it would be too hard to get the blood on the weekend, then on Tues they forgot to order it before we got there and they said they would have to work after closing to transfuse him, so they wanted to do it Thurs. By Thurs when he was finally transfused he was on the edge of a 5. It made him so sick. He was fussy and vomiting pretty violently. They're not used to having a parent involved like I want to be involved and I think it annoys the dialysis folks. I kept asking for the transfusion and they would say he was "fine". Once Dr. Tolar got involved, the job got done. It's kind of frustrating that when I ask, what's his blood pressure at the say "it's OK" and I have to repeat myself until I get the numbers. Same thing with labs. I get "they're fine" instead of the numbers. Needless to say, I've learn to ask for a print out. :)

  Skin wise, Daylon's not having the best time. He has started blistering again. On the days he gets blisters, he tends to have 5 or so, which is still an improvement from where he once was. His back is a COMPLETE disaster. There are only trace parts of his skin that are still intact. His left knee and now his leg have broken down and we had to wrap it up again. His left leg upper thigh, groin and penis area are also raw and inflamed. We switched from the disposable diaper, to Fuzzibunz (a popular cloth diaper among EB babies) for the first time. In the past, I didn't think Daylon's skin could handle the Fuzzibunz, but I thought he might now. Anyway, turns out, he still can't he ended up getting pea size holes in his back's skin, where the diaper's elastic (wrapped in fleece) touches the back. Oh, well. Back to our old technique. We're back to our 1/2 jar a day habit of Aquaphor and wrapping Daylon in fluffy blankets and sheep skin to protect him from life and his self too. I have to admit that this time, watching his skin break down has been tough on me as well. It's easier to deal with kidney and brain issues when he's able to enjoy his skin. Not to mention, I have my parting conversation with Dr. Tolar floating in my head. One of the last things I asked? "So, be honest with me. After all of this...is Daylon still dying?" I could tell by his face that he wasn't expecting that question. He told me that no matter what he did, Daylon would always have Junctional Herlitz EB. He could never have non-Herlitz EB because those kids have a mutation that is entirely different than Daylon's. They're missing Collagen 13 and although his level is low, he has collagen 13. He is missing all three Lamin genes and while the transplant is helping to produce the lamin genes, he will more than likely never have as much as your average person. With 30% of the needed lamin though, he could live a "normal" life. He said that as of right now, he didn't think Daylon was near his demise, however, he said that may change in a year from now or 5 years from now or 10. It's all a wait and see thing. Watching Daylon's skin fall apart this last week, I couldn't help but wonder how much longer we had with Daylon here on Earth. I pray this transplant bought us more than a couple of months with him.






  Taking a couple of minutes to realistically think about this, I believe in my son and he's a fighter. Skin break down is the normal part of post transplant life. I am sleep deprived, sick and nervous being 1600 miles away from the hospital and team that knows Daylon and knows the transplant. The race between the benefits of transplant and the prognosis of death in infancy that he was given at 3 weeks old have been a constant fear for the last year since we found out about the BMT program. Having self mastery over my thoughts is obviously not a strong point of mine right now. :) I'm sure this is just a bump in the road.

   I'm looking forward to celebrating Daylon's second birthday this July :)


   Everyone around here is doing pretty good. Brian caught a cold and it has made it's way through everyone except Sadie. Daylon ran a fever and should have been hospitalized, but the dialysis nurses didn't pass on the info to the BMT doctor, so they didn't know about it until he was better. Thankfully, (and I don't know how) but it didn't have the lingering effect on him that it has had on everyone else.
  At this moment it's noon and Daylon is still asleep. He's been flirting with a fever and vomiting all night. We may be heading to the hospital later for admission. Just a heads up.
  Thank you for all of your love and support. Happy New Year!
Dr. Daylon
 

21 comments:

The McLaughlins said...

Jen and Brian,

Thank you so much for the update. I am so sorry to hear about Daylons skin breakdown. I continue to pray every night that his brain and kidneys improve but, I've lacked in my asking that his skin continue to get stronger. I know that prayer works and I will continue to pray for not only Daylon but for your family and for his doctors as well. I am glad to hear that he is peeing more. Although that has caused him to be severely dried out. I am sorry to hear about that. I'm also so upset to hear about the lack of empathy and compassion on the dialysis crews part. Ugh, I just want to march down there and give them a piece of my mind! I'm glad that Dr. Tolar can have an influence on them even though he is so far away.

I am absolutely loving all of the great pictures of Daylon that you posted today. He is so darn handsome and I just love his smile!! Thank you for being willing to share this wonderful child with us. I'm sorry to hear that he has been sick recently and has a fever again today. I hope that he doesn't have to be admitted to the hospital tonight but if he does, I pray that they will take the BEST care of him. I know that with you by his side, they will have to! :0)

Jen and Brian, you both are such great parents. God sent Daylons sweet spirit to your family for a reason. He knew that you would do everything in your power to protect and nurture him. You have done a wonderful job so far and I pray that you will have the opportunity to continue to raise him here on earth for many more years to come. I have faith that he can and will be healed. God Bless you!! Stay Strong!!

Lots of Love,
Amber McLaughlin,CA

sharon kaye said...

I'm glad to hear of some of Daylon's improvments but sad to know that there is another bump in the road. I hope all of you are getting over your sickness, especially Daylon. I don't know how you keep up the energy to do all that is required of you. Just fighting that 91 freeway traffic can just drain you. We send our love and prayers.

Jamie said...

Daylon looks just like my daughter to me for some reason in this post, or maybe Lucy just started looking like D :)

Prayers and mental hugs for you and your family, prayers for compassion and wisdom for the doctors in CA.

Mom to Many said...

Jen,

Your family has been on my mind.
I am so happy you found a moment to update your blog. I don't know how you found time.

Sweet little Daylon. I imagine Daylons spirit has grown by leagues.

Your family is amazing.

Cheryl

Jan's Blog said...

Oh I'm so sorry to hear about the skin breakdown. It must feel devastating for you. The bad is sprinkled with some good so that's good. I just don't know how you keep going. Those of us that love Daylon and all your family from afar hope our prayers and good wishes help. I wish there was something concrete I could do. Anything! I feel useless and want to help so much. But, that's my problem. So I'll continue to send up prayers and send you love and hugs in the form of comments on your blog. And thanks soooooo much for the update. I KNOW you don't have time, but it means so much. After a few days with no update I start to get a little panicky. Anyway... love to all!

Bella's Blessings said...

Edlings!
Great to hear the latest... the good the bad and the ugly. Thanks for sharing all of it; we all appreciate how busy your schedule keeps you right now. Are you getting some down time? It's a marathon, not a race, right? Hope you are getting some respite. We're close and available. We have a little bug hanging around the house right now as well. Hopefully we can all reunite soon! We love and miss you. You keep training those CA docs and medical staff that THEY WORK FOR YOU, not the other way around! (dejavu, huh? All our love... Ringgolds!

Annalien said...

Thank you for the update! I check in every day, but I fully understand that your life must be incredibly busy. (I have only 3 kids, all of whom are healthy, and I struggle to fit everthing needed into a day - I stand in awe of what you accomplish!)

Please know that my prayers continue to be with Daylon. I pray that the skin breakdown is temporary and short lived and that his immune system, kidneys and brain all improve dramatically over the next month so that you can stay home. God bless and keep you, always!

Anonymous said...

Thank you for the update! You really went through a heap of difficult situations and terrible fear.
I keep praying for Daylon to get better. Please, don't lose your hope and courage until he gets better. Hugs!

momof4inNY said...

Thank you for the update on your very handsome young man!!! The pic of him in the Dr outfit is adorable!!! Love the look on his face! I think of Daylon daily, praying that he gets stronger as the days go on.

Anonymous said...

Thanks for the update. I've been following your lives for a long time, but I don't think I've ever posted. Daylon and your entire family has come so far! I just needed to tell you how beautiful and happy and vibrant Daylon looks! He really is becoming such a little boy and I'm so pleased to be able to get to know him through this site. I'm not sure how you do it all, but your family amazes me. Many hugs to you all - especially that handsome little boy!

Gilda said...

Keeping you in my prayers! Sweet Daylon has been through alot and I continue to pray that he has better days. I also pray for you because are always by his side to make sure he does get taken care of and I am sure Daylon knows it too.

Jen Burns said...

I just started thinking, what a blessing you did this BMT when you did. Daylon is so young and he'll hardly, if at all remember the rough (extremely understated) road that he has walked. How awesome is that!? I have 100% faith that he will be a totally normal little boy, happy, healthy and loved. You guys have done so much for him!

Lisa said...

Just because you went home doesn't mean life gets easier, huh? Daylon looks happy to be home though...he's made it this far, I think things will slowly and steadily improve from here. Thinking of you lots!

Mom to Many said...

Jen, my tribute to Daylon and your family is up on my blog. http://ldsmomtomany.blogspot.com/2011/01/baby-daylon-what-lucky-little-kid.html

If you would like me to change anything or add anything you can reply directly to my email if you open my comment in your email box. (I have enabled that feature.)

Hugs,

Cheryl

Anonymous said...

Thanks a million for taking time to give Supermans fans an update. He has been on our minds and in our prayers daily. So sorry to hear about his skin issues but I'm hoping by now they are getting better. The staff at CHOC will get to know you and what you need and deserve as his most important care giver.
God bless you all and know we are all out here still rooting for Superman.
Bernie Gallagher, California

Amber said...

Glad for the update! Your Christmas card was adorable.

Glad your back with family, but I bet it's scary to be away from the security of the team in Minnesota. Those medical workers who placate you with "he's fine" annoy me! Be a Momma Grizzly Bear!

Kim M said...

Thank you, thank you, thank you for the update! I have been going through Daylon withdraws! I check in almost daily to see if there is an update. When you are down, remember you still have your prayer warriors out here praying for Daylon!

I too look forward to his 2nd birthday celebration!!!

Praying Philippians 4:13 for you

Melissa said...

I love your blog! Daylon is an amazing, strong and resilient little man! My son has EB also...DDEB. So do I, and so does my father. My son is 3 months old. I know how hard it is to have an EB baby. You are an awesome mother and baby Daylon is blessed to have you! You know...we are handpicked to take care of these little butterflies, right?? It is our journey to bring light, love and happiness to them...for as long as we are allowed to...whether it is 2 days or 75 years...we are blessed with these little angelic creatures!

Anonymous said...

Hope things are going well with Daylon and that he did not have to hospitalized. He is such a fighter and his pictures are just great. The one of Dr. Daylon with that little smirk on his face is so adorable. He acts as if he knows just what is going on and he is going to take over for the doctors. We are praying for Daylon and for all of you to have the comfort, strength, love and faith to continue on. We pray that everything will go well for our precious Daylon. Daylon and all of you are in our thoughts and prayers. Hang in there Superman and show those Doctors how to do things. Hope the other kids are doing well. Take Care and try to get some rest. We Love all of you.

All Our Love;
Myrna & Dwight CA

Anonymous said...

Man oh man! I have such a lump in my throat and tears in my eyes. I admire your honesty and having the courage to ask the question about Daylon's life expectancy.

I think this little precious guy is so adorable. I think he is the luckiest kid around to have such dedicated parents.

I'm praying for your family. You are an inspiration!
Kim

LollipopShotsPhotography said...

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