Friday, June 25, 2010

Day+1- the start

I can't believe it's over. The bone marrow is there, in his body and (fingers crossed) getting to work. It's such an unusual sense of relief. Presuming that all goes well, it will be years until the EB is gone, but by day +60 we should see some marked improvements in his skin which also means improvements in the quality of his life. I'm so very excited. I can't wait to see him play with others, and not be in pain. I can't wait to really hug him. It's been hard to watch him suffer and then suffer more when I comfort him. Brian really seems to think that he'll be healthy at 5; I don't know why. Five is a good number, though. I would definitely be happy if that were true.
So, it's the start of good things to come. Now for the unfortunate truth: it's also the start to some bad.

Yesterday afternoon Daylon started crying and was inconsolable. Once I got him to sleep, I noticed he was having a tough time breathing, then he woke up and started gagging. We thought he was just going to throw up (which is odd since he's not eaten anything at all for two days) but then he started to not be able to breathe in. The mucus membranes were rupturing in his throat and he was choking on the fluid. Within a few minutes and several hardy chokes, his eyelid started bleeding and blood was going into his eye. This dry heave thing went on for three hours. There was nothing they could do. You can't suction because his mouth would tear. He cried and cried. His cry is just this pitiful, sad break your heart sort of sound. The parameter of his tongue looked like a turtle shell with mounds of blisters. There were on the roof of his mouth, his gums. It was overwhelming how fast they sprung up. Some bloody. Some regular. They eventually gave him a few doses of morphine and he fell asleep around 3:30 a.m. He woke up this morning and it was the same thing again. Instant crying, choking on mucus (result in bubbles near the size of his head. No joke) and breaking blood vessels . His tongue is so swollen it rests on the his bottom teeth. It's so blotchy and painful looking. He can't sit up on his own anymore and even with help he struggles.

before chemo

today


His skin has become a story of it's own. It's like he's a newborn again. The blistering is becoming more than I can keep up with. The slightest touch, and he blisters. Spontaneous blistering is what it's like. No matter how gentle I try to be, I still hurt him. I hate being the source to his pain. I kissed him last night and he blistered. That hasn't happened in months. Overnight, his chest looks like ground beef. He is in more pain than I can imagine. The constant Morphine drip is the only way he's napping now. This is the hardest things I've ever had to do. My precious little boy has suffered more than I've ever seen another suffer and now, he suffers more. The Dr.s say that with his form of EB, the mucositis is hitting hard and hitting early. We knew that was a risk. We knew that was a risk and we took it to try and save him. Now that's it's happening, it's hard to internalize all of it. The doctors have told us that it will get harder over the next 10 days and he'll continue to suffer for the next 20 until Caleb's bone marrow starts to produce cells. I'm not sure how that's possible. My point is, this morning I felt like I did a few days after I had Daylon. I was crying like a hormonal post-birth mother, feeling so scared and unsure of what was in store for my son. When Daylon was diagnosed, I remember walking out of Dr. Metz office and making it to the elevator before Brian and I started crying. I've never felt so lost. It was us against this horrible disease that I had never even heard of, and all we knew was that within a year, the disease would win. Nothing could be done. That is a feeling that no one should have to experience. Overtime, we've educated ourselves and tried to give our son a meaningful happy life, no matter how long. It's brought us happiness in return. Today, when that feeling began to take over my mind, Brian and I prayed together and began to talk about all of the people in our lives who offer us so much love and support. We read the comments that you all have posted and retold each other of the acts of kindness we have seen and felt over the last 11 months and the best thing happened.That awful feeling went away. I know we're not alone in this. We have you. Thank you so much. Thank you for praying for our son. Ya know, his skin has cleared up so much over the past two months that everyone around here is amazed at how he looks. His skin durability tests extremely low, but his skin looks so good. I know in my heart that it's because so many people are praying for Daylon. I also know that if his skin were to have stayed the same as it was a few months ago, the effects of the chemo would have been fetal. I do not think that the Daylon's condition as of March could have handled such a severe reaction. We really feel that it's saving our son's life right now and it's giving us sanity. From the bottom of our hearts, thank you.

14 comments:

Bella's Blessings said...

Oh, Jennifer, my heart just breaks reading this. I'm sorry I couldn't spend more time with you today. I remember giving Bella her first blisters from holding her little hand in the isolette the night she was born. What a crummy feeling indeed. I know this sounds nuts, but have you ever lanced his blisters in his mouth? I have had to on several occasions where Bella couldn't breathe. Her tongue balloons into a giant blister that fills her whole mouth, and more than once I've had to venture in and do the deed. I'm glad he's on a morphine drip. Keep him numb and sedated. Glad to hear Brian's mom is here as well to give you some much needed breaks. I am back at RMH for the night and what a difference getting off the unit makes. Get outta there, even if only for an hour or two. It'll help as well. We're with you.

Amber said...

My heart, too, is breaking for Daylon and all of you. That poor baby. I am sending emotional and spiritual hugs to all of you... I hope you feel them.

wernekm said...

Your precious little boy is in my prayers daily. My heart breaks for him and your family. I am not a mother so I cannot even imagine how hard this is for you but you are such a hero to me. The strength you and your family have amazes me and I truly believe that God is blessing you. Good luck over the next few weeks and know that there are lots of people in Auburn, AL praying for Daylon and your family. God Bless!
War Eagle,
Katie Werner

BRIAN AND BROOKE said...

My heart is breaking for you as I am looking at little Daylon. I pray for comfort for all of you and that you will be able to get through these next 20 days. Your heart must be in pieces seeing your child go through that much pain. Always remember you are all loved so much and are always thought of :) Never a days goes by where i do not think of you and your family. I heart goes out to you Jennifer. What a courageous MOTHER you are!!! Hang in there, may you feel some peace in this hard time. And I will be praying and fasting for Daylon's health.

MUCH LOVE
-Brooke

jeanine said...

oh Jennifer. I can't even imagine! You are so strong! You and your family continue to be in our prayers!

Jan's Blog said...

My heart is breaking for all of you, but good things are to come. My prayers continue for you and I am still is awe of Daylon's strength, and yours. I pray for the doctors to be guided by Heavenly Father. He is a healer...so don't forget to use Him. Love to all!

Linda said...

Dear Jennifer: I am so sad that Daylon is in so much pain. Praying so hard that he feels better soon. Don't begin to doubt that you are doing the right thing. JEB takes these children way too early and you really had no other choice. God Bless and please remember your EB family is out here sending prayers and good wishes every single day. Love Leah's Nana

Patrice said...

I hate this part. With every child I cringe with every update these first 20 days. I hate EB, and I hate EB's reaction to chemo. But there is HOPE now where there wasn't before. Daylon has a FUTURE. An amazing thought, huh? Praying for you guys and thinking of you all the time. Stay strong. Hope, Peace, Strength. Love you guys.

Nancy said...

Hugs to all of you! You and Brian are amazingly strong. I can't imagine what you're going through. Thanks for keeping us updated and we'll send extra prayers your way. We're rooting for Daylon!

Wendy said...

Jen, I love you! So glad we got to chat for awhile yesterday! Find the peace in all our prayers for you and the family! It's amazing when we allow this peace during difficult times. It doesn't make the events any less difficult,just bearable! Smile! Love you guys!

Pati @ A Crafty Escape said...

We have been praying for your sweet Baby Daylon... hoping that the process would be gentle. Please know that we will not give up, and will continue praying for him and for the rest of the family. You are not alone... and will never be. Stay strong and know that he feels your love!

Lacy said...

Praying hard for your family... I cannot imagine what you are going through. Your strength is incredible. You can do this!

Liz said...

I'm so very sorry that you have to go through all of this. Just know that you're in our thoughts and prayers. We're keeping our fingers crossed for you and your family. Even our five-year old asks how the "baby on the computer" is doing!!

Anonymous said...

My heart just breaks for you, your family and baby. Our prayers are with you and we will ask God to send His peace and comfort to you, your family and baby boy.

Michele