Tuesday, July 20, 2010

Day +26: whew!!

Daylon and his snake cover up (hospital policy) for the tornado warning!

The last day or so has been good for Daylon and our family. We can breathe easy...literally. Daylon's ventilator issue have become a thing of the past (I hope!) and he's now breathing easier. His oxygen is at 30% and room air is 21% (I think. Don't quote me on that) so he's moving his way back down. His peep pressure is still kind of high but we'll take what we can get! Both his liver and kidneys are functioning a tinsy bit better according to his blood tests. Woo-hoo! The dialysis is working well, taking off about a liter of fluid a day but since he has not peed in 2 days, he's still up in fluid. His skin's not stretched as tight as before, so we're ALL thankful for that! I could hardly lance his blisters fast enough!! I've asked that a certain respiratory therapist be removed from our care team and it's been so great! I'm always worried she'll be working with him when I'm not there. There was a mishap this week and it will be the last one for her. It was the perfect excuse.
As far as skin...AMAZING!! He is healing so stinkin' fast. I'm excited with the results so far for our poll! Everyone wants to see his before and after photos, so I'll post them on day+28. The significance of that is that it takes the skin 28 days to replace itself. All of the skin you will see on him in the after shots will be transplant skin. More EB news is the medical journal on the EB BMTs results will be published on August 12th....you didn't hear it from me. :) My hope for Daylon is that things continue to progress over the next week and he can be moved back to the BMT unit in a week or so. We'll see!!
We've had an amazing experience! Yesterday we got to meet with Dr. McGrath from London. He's a renowned EB specialist. He is the first medical professional to care for Daylon that has experience with other Junctional Herlitz kids!!! I can not even begin to describe what that felt like. He has examined Daylon's cells, knows exactly what is going on with Daylon's body and he could give us advice!!! I have had questions from the beginning that no one has known the answer to. We have the absolute best doctors money can buy waiting for us back home in CA, but it was nice to hear, "my other patients do...". Plus he has BMT knowledge! Dr. Tolar brought him in and they set aside a good size time slot for us to ask questions. I asked questions about everything from his adult teeth having enamel since he's had the BMT (A: yes) to which organs are involved in Daylon (A: only breathing and urine organs! Woo-hoo!!!) to what to do for each serious wound. I am so happy, you don't even know!! So the kicker? He said that looking at Daylon's cell specifically he had less than a couple months to live. I responded, "Hmmm. Yeah, cause he had Herlitz, right (no question mark because it really wasn't a question.). ". He replied, "No because his cells showed he was very sick and did not have much time. Some kids can live a bit longer.". I know this. Really, I do. His prognoses was less than a year, he's over a year, this shouldn't be news, but somehow it was. My stomach just dropped and I felt so sick. It was like being told his diagnoses all over again. He reminded us that things have changed and there are so many possibilities for Daylon. I told Dr. McGrath how very sick Daylon once was. I told him about how I couldn't change or kiss my son with out him blistering and screaming in pain. I told him how at one time he needed pain medication almost constantly and couldn't sleep more than a half hour without waking because he would move and aggravated his pain. Last fall he was missing skin from most of his body, he was so hoarse at time we couldn't hear him cry at all, he was gray from lack of oxygen and I was afraid to put him to sleep because I wasn't sure he would wake up. I have no clue what happened, but he started to get better; to get stronger. He grew and gained a larger airway, he put on weight, but shockingly, his skin was a bit more resilient. I've mentioned this before, but his skin when he started chemo was the best of his life. Anyway, I asked if this was typical of Junctional Herlitz. He said it was not, and is actually the exact opposite. He said that when he looked at Daylon's cells, he could see that some of the cells had corrected their mutation. It wasn't going to cure him, but it made him better than he once was. I am absolutely positive that that miracle was our Heavenly Father. I know that he was making him strong enough to withstand this transplant. What a testimony to the power of prayer! We feel so very blessed to witness so many wonderful miracles! Thank you all for your prayers!
FAMILY NEWS:
Aunt Gwen playing with Caleb
My Aunt Gwen and Aunt Gloria (my mom's older sisters) drove 15 hours (!!!) up from Colorado to stay with us! It has been such a help to have them here with us! They've helped with the kids so Brian can be up at the hospital and they've kept me company up there too! It's been so fun to laugh and catch up with them! I can't believe it's been almost a year since we've last seen them! They came up on Friday and we're so sad to see them go tomorrow! The kids have loved the extra attention, that's for sure!!
Aunt Gwen and Aunt Gloria
Models!
Tonight after dinner and rocket building at the Ronald McDonald house we went to Menehaha (forgive my misspelling all those from MN!) falls. Brian and the kids LOVE it and it was a treat for our Aunts and I to see! It is absolutely beautiful. There are so many bodies of water around here and it just green, everywhere! There's a huge woodsy park attached and we got to visit the first home in Minnesota.

I've made a goal to post everyday, so I hope, broken computer or not, I will be posting again tomorrow! Liver ultrasound at 7am, so I should head home and crawl into bed since it's after 1 am now. Please continue to pray for Daylon.Thank you all for being Daylon's cheerleaders! Go team!

16 comments:

Annalien said...

I am so glad Daylon is breathing easier. I pray that his liver is healing and that his kidney function will also pick up. Your kids are adorable!

Anonymous said...

So thankful you had the opportunity to talk with a doctor with experience who could also give you a little window to see how God was working in Daylon to prepare him for this BMT! Aren't we glad that NOTHING surprises God? He knows and loves your Daylon so much!

I've been praying for Daylon and the rest of the family. I've learned through your blog and others, that EB doesn't only effect the one with the disease but the entire family!

I will be praying specifically that Daylon's liver and kidneys will continue to increase their functionality, that the lungs/breathing will get better!

I'm also praying that Daylon can get back to 5D so you can hold your precious little guy.

Thank you for your posts - I'm sure you would rather be in bed, but it does help to know how to pray specifically for Daylon. It also gives us the opportunity to see God working in specific ways! Keep up the sentry duties -

praying in Waterford, MI
Kim M

ANewKindOfPerfect said...

What an amazing meeting with the London doctor! To hear how close Daylon has come to the edge and to know that now he is walking away from it .. it's awesome! :)

Anonymous said...

I have been following your blog for a few months now. I so look forward to your updates. We are praying.

Aviles Family said...

you are an amazing photographer Jenn! I love looking at your adorable pictures of your family. We of course continue to pray for your family. I look everyday for new posts, you are an inspiration to me! Miss you!

Anonymous said...

Thank you for sharing your miracle son with us. Heavenly Father works is many wonderful ways. I still pray for your baby boy everyday and keep a prayer for you all in my heart.

Kristy said...

How wonderful that you had that opportunity! So thankful that Daylon is continuing to progress. You and your beautiful family remain in our prayers! Blessings.

Kristy said...

Fabulous photos by the way! ;)

BRIAN AND BROOKE said...

I LOVE being a cheerleader for him! You all are such a blessing to me!
I am SSSOOO HAPPY you got to meet McGrath from London.....I bet you just feel some what relieved to be able to ASK questions and get some real ANSWERS!! That is SO AWESOME you guys!!
Also wonderful news that his breathing is a lot better and his some of his cells are correcting their mutation!! Heavenly Father deff has hand a big hand in all of this. We will keep cheering you all on ....here from Cali.
Go Daylon Go Daylon..GO GO :)

M. Teter said...

I cried while reading your post both for his and your suffering and for the miracle that the God of the whole universe who creates worlds without end will look down on a little boy and reverse the mutation in enough tiny cells to help him survive this grueling trial. My faith that Daylon will make it through all of this is even stronger than ever. I want to come to his missionary farewell. I wonder where he will be called to serve? I'm taking guesses if anyone wants to weigh in.

Emily said...

So so happy to hear this news! We're all praying for you and Mr. Daylon!

Love the Gunnell and Rawlins families!

sharon kaye said...

What a blessing to be able to talk to a doctor that had some answers. It's wonderful that you are able to see and understand more the miracles that have happened for Daylon in preparation for the transplant. Not only are many people praying, but I am sure there are angels strengthening him and your whole family. I think you are a very special mother to be chosen to go through this with him. You are my inspiration. I wish I could give you a huge hug. (You should consider becoming a professional photographer. I love the photos.)

The McLaughlins said...

I'm so glad to hear Daylons breathing is doing so much better. Hopefully his liver looks good on the ultrasound. That is so cool that you got to meet with Dr. McGrath and ask him all of your burning questions. Sounds like things are really turning around for the better. Go Daylon!! What a fighter you are. Keep up the good work.

Take Care,

Amber McLaughlin, CA

Anonymous said...

BEAUTIFUL PICTURES! What kind of camera are you using?

Prayers go out to Daylon! Your son is always in my heart! I think about him constantly and check this blog at least 5 times a day! :)

I wish I had the words to tell you and make everything else better.. I wish I could make him 100% better.. Just know that there are A LOT of people from all over the country and world praying for him! :) It is all in God's timing. Daylon will be healthy! :)

Pat and Denny said...

We keep you all in our thoughts and prayers every day. As we read your blog we sometimes feel we're on the roller coaster with you. It's amazing what prayer,great doctors, and a truly awesome family can do. We look forward to the day you are all back in Corona.

Steph said...

Jennifer it is so great to hear Daylon is doing so well! Your kids are so beautiful! Your oldest looks just like you! Sending prayers and happy vibes your way. Try to get some sleep in the midst of everything!