Friday, July 2, 2010

Day +7 and Day +8: and so it goes on

Daylon and the puppy and book I won for him playing the hospitals bingo on tv!
We're heading towards the end of Day +8. The mucositis climaxes somewhere between day +7 and day +14. He's really in the thick of it all right now and I'm so grateful that he's unconscious for it all. Blood and mucus drain pretty much continually from his mouth and out his nose (which I was not expecting) and his lungs have become "coarse". His throat is swollen tighter and there's SO MUCH secretion that fill his mouth. I didn't think it could get any worse than it was when he was conscience. Now that it has, it's nice to see him sleeping and not in agony. Being under sedation has helped to control the mucositis since he can not cough, vomit or cry and worsen his condition. I'm grateful that he's not in pain and I'm more than happy to except the consequence and hang out longer in Minnesota for all the extra therapy that will inevitably follow.

This whole experience has taught me to be more assertive. The hospital is very knowledgeable about EB (compared to most), but every EB patients skin is different. Daylon's intubation has been different than the others in that he can't be moved once it's in. The doctor warned us repeatedly that the tube rubbing against his airways when he's moved can cause blistering and the tissue may tear. Of course, movement is essential to preventing bed sores, so finding a balance is crucial. It's been so difficult for me to have to tell the medical personnel that they can't do what they're doing and they need to find another way. Daylon's movements now are being performed like he's a spinal injury patient. A respiratory therapist comes in and holds his tubing and then the nurse and I move his body in one movement called a lumbar roll. It really seems to have helped with the breakdown in his mouth so I'm thinkin' his throat has benefited too. There's a nurse in the room 24/7 and the BMT nurses that come down to watch him have been pretty gracious about receiving my well intended suggestions. I'm learning that when it comes to your child it's better to speak up when you first have an issue rather than to wait and rationalize with yourself that "they're trying".

As for Daylon's condition, his body at the moment isn't doing as well as it was a few days ago but it's to ups and downs are to be expected. Daylon's Creatinine level (kidney function) is up today. It's .78 and normal is .5 and under. He's far from needing dialysis though (a solid 3) so that's good news. The renal doctor was called in and he rearranged his meds and he told us that he's concerned but he'll be watching him closely so things don't get out of hand. He's up in weight...again. Two days in a row now. Poor puffy baby. Today when we changed his pulse/ox tab he had serious indentations. They're still there actually, with little blisters all around. His hands are like they've never been. Most of his finger are black. Yes, black...with rolling mounds.

Yesterday he received another platelet transfusion and it was still holding as of this morning! Yay! He's yet to need a blood transfusion which is really impressive at this point.

I've been holding out on you. I've got some super good news. In the morning labs on day +8 they check for cell growth. They told me that if he were to have a count it would be around .1. Well, the results are in and it's .3!!!

The CELLS are GROWING!!

Woo-hoo! Now lets just pray it's Caleb's cells and not Daylon's! They said it's not likely that the patients own cells grow back but it can happen. We'll find out for sure on day+28 when they sample his bone marrow. I'm so excited at the possibility of there being a possibility for him. Last July, when Daylon was born, I thought I would hate every July there after because of the reminder it would bring of the little boy who should be in my life. I love that it's July 2nd, and although I have had more stress and heartache in my life than I thought I would ever have, I have my son here with me. I try to think back to my appreciation for life and love before EB, before kids, before marriage. Life was good, but you know what they say: You can't truly appreciate the good times until you've seen the bad times. Brian and I have had such an unusually crazy life together. I believe that our Heavenly Father was preparing us for all of this. I know that I have a lot to learn, and although at times I can be a slow learner, it is sinking in. Learning about the cell growth brought an unreal sense of happiness. What doesn't kill ya, makes ya stronger right?!

13 comments:

Michelle said...

SUCH GOOD NEWS!! I think about you guys all the time. You have an amazing attitude about this whole thing, and as cheesy as it may sound, you're an inspiration!

Bella's Blessings said...

Wow. What a roller coaster. It's tough to try not to watch the outside for an indicator of the transformation happening on the inside. I suppose it's a bit like being pregnant. (As if I knew LOL). What I mean is, at first, all the CRITICAL work is being done at the cellular level, invisible to the naked eye. Then, over time, visible signs appear to signal the new growth that has already occurred within. That's the analogy I'm holding onto tonight. Proud to be walking the road with ya.

Mom to Many said...

I am so happy that the numbers for cells are looking hopeful. You are doing a great job! Keep advocating for your boy. My Dad stopped a nurse from a disastrous mistake one day. A nurse came in and dropped a stack of wash cloths into the sink that everyone washed their hands in and preparing to wash his burns. Can you say infection? At the time sterile procedures were all that was in use until after his skin was grafted and intact.
Good Job Momma!
We are praying for possibilities.
Cheryl

sharon kaye said...

I'm glad Daylon is resting through all of this. So glad to hear the good new about cells growing. Good for you for being Daylon's advocate. You are his voice for what he needs. Good for you for speaking up and being brave. (It is hard for me to do too.)

jeanine said...

Glad you are speaking up! No one knows what's best like a mom does.

And so glad that the cells are growing!!!

Jan's Blog said...

What glorious good news. And good for you for speaking up. He's your precious baby and you can't afford to keep quiet and have regrets later for what you didn't say or do. Be the Alpha Dog!!!

Prayers are being sent out for you!!!

Linda said...

So glad that the cells are growing and Daylon is still resting comfortably. Extra prayers are still coming your way. Take care and hang in there. Never be afraid to speak up while in the hospital. You KNOW your child best and go with your gut feelings. That is God showing the way. God Bless. Love Leah's Nana

Anonymous said...

Bella's Granmda sends you her love and prayers. Stay strong. You can do it Daylon. You are an amazing little boy. My prayers are with your family as they go through this journey.

Jenny said...

Such great news!!! Keep up the good fight Daylon. Hugs from Sweden!

Jess Edling said...

WAHOOOOOO!!!!!!!!! That is good news indeed (cells growing). Kudos to you for speaking up. The spirit will not lead you astray. Love you!

BRIAN AND BROOKE said...

YYAAAYYYY!!!!THATS AWESOME!!!!!!Keep growing cells, keep up the good work :) Glad your speaking up, sometimes its hard to ...but in the end mom always knows best :) Daylon be strong your doing a great job! Glad he can rest through all of this seems like it would be unbearable for a child to continue to go through. As always your doing a WONDERFUL job Jennifer. Happy 4th to you and your family :)

Brandie Metz, MD said...

Hi, Jennifer - So glad you are blogging all this so I can keep up on Daylon's progress. You and your family are an inspiration. My prayers are with you!
Brandie Metz

Starla said...

Hey- my mom was telling me about your sweet little boy a couple months ago. I'm a pediatric nurse in SLC so I was glad to find your blog yesterday. I've just been catching myself up on all of your posts...

I was so happy to read about your assertiveness! At our hospital, the first thing we give the families is a handout called "Speak Up." Basically it says that you know your child best and so please speak up with concerns or questions! I appreciate parents saying things, especially when I'm caring for a child whose condition I've only cared for a few times!

Hang in there- there are more thoughts and prayers with you all than you can even imagine.