Monday, June 28, 2010

Day +4: so much to take in

Daylon had a late night last night, falling asleep at around 3 a.m. He was breathing well with the oxygen he was receiving with his saturation levels in the high 90's (remember 100 is perfect, anything below 90 and they up their game). At 6:30a.m. Erin (our primary nurse), woke me up to change his diaper. Erin stood by his bed holding the mask to his mouth as I changed him. Daylon was agitated and his oxygen saturation level was in the low 90's and upper 80's. The charge nurse joined us in trying to make him comfortable. They messed with how much oxygen he was receiving, we sat him up, he was suctioned (which is just painful to watch, more or less endure I'm sure), I cupped his back (a trick I learned when Sadie has RSV last year), we rolled him onto his back to try to let all the secretions drain forward. It worked for a few minutes but eventually his levels fell again and his g-tube site and chest started to bleed, so we rolled him back. Some more nurses came (the shift was going to change) and the docs. came in. They decided to get another ICU consult and left to speak with the other doctors. By this time his levels were in the 80's and nothing was working to bring them back up. Erin, Rachel (the daytime nurse that was coming on) and I fussed over him. As the levels dropped he was no longer responsive and became limp. I watched his face become blue and then gray. I kept calling his name but he wouldn't respond. He wouldn't breathe. The nurse pushed the code blue button and two dozen people rushed the room, pushing me aside. He was bagged and EB or not, suctioned deeper, his clothes were cut off, and the sea of people grew deeper. I just stood in the corner completely helpless. It was one of those times in your life where it's like your numb and stuck in one moment while life rushes by you. It's like your watching your life from a third parties perspective. It's was only for about two minutes but it's played for hours in my mind today. They got him back to a healthier level and rushed him to ICU. He was there for about 30 minutes and then taken to the O.R. to have the breathing tube placed. The risks were great for the procedure because they didn't know what to expect. No one at this hospital has experience with intubating JEB kids. The airway may be too tight, permanent damage could be done to his airway, he could bleed excessively.


The procedure was about an hour. They said the airway was really tight. The rubbery camera was bending against the swollen walls of his throat, so they had to use a sturdier camera. It took some time, but it was successful. A ventilator now does all his breathing and he's saturation level is 100.

He spent the first several hours fighting his tube and new condition (that wasn't supposed to happen). He was given large child size doses of sedatives but he really fought it. That's just like Daylon. Tough. Daylon is now being given 3 new medicines: one for memory, one to sedate him, and one to paralyze him. He'll stay this way until the mucositis heals, which is at least two more weeks. The good thing about it all is now he doesn't have to suffer through the horrible side effects of transplant. I'm so very grateful for that. He deserves some rest.

After he was sent down to the O.R. I text everyone on my phone's address book and asked that a prayer be said for Daylon. Brian and I went up to the seventh floor in the hospitals meditation room to be alone and pray for our son. After we sent the text the replies were so comforting to us. Everyone was so supportive. Thank you. Again, it's nice to know we're not alone in this. Have a happy day.
Daylon and his lime green shadow

32 comments:

Mom to Many said...

What heart ache. I am so sorry that this has been such a long hard haul for Daylon and for all of you. I am praying for him and for you and hoping for safety and sucess.

Cheryl

Bella's Blessings said...

I remember hearing the code called when Bella coded in the NICU at CHOC the night she was born. We were trying to get some sleep in Ang's recovery room in St. Joe's. I got the call 30 minutes later, "Uh Mr. Ringgold, there's been an incident. You need to come down here." The tunnel walk that connects St. Joe's and CHOC takes maybe a minute to walk through, but that night, it felt like eternity. I can totally relate to time slowing down and feeling like a numb observer. I am so thankful that Daylon did so well in surgery, and that God guided those hands and machines with such tenderness in that Operating Room. Good for you for going to the place you could make the most difference: your 3 F's! (Friends, Family, and FAITH). I am inspired by today's story, and will miss you over here, though I know you're only on the other side of the double doors! I smile at Daylon's name on his board every time I go to the food room. I am so relieved that he can now rest and heal and not suffer. God is good. All the time.

Anonymous said...

You don't know me, but I sit here tonight crying for you and your family. Know that you have prayers coming in from all over. Sleep tight little guy--dream of angels while your body does what has to be done to make you better.

jeanine said...

How scary! I'm so glad that he'll get some rest and won't have to suffer for a bit. Love you!

Nancy said...

Wow! My heart started racing and I felt kind of numb just reading this and imagining what you were going through (although I never really could). We pray every day for Daylon and today I felt impressed to pray that he could rest. I'm so happy that he can now. I'm in awe of his sweet but tough little spirit. Thank you for sharing with us. Things will work out as they should.

Tanya said...

I can't help the tears as I read your post. What a awful experience for the both of you... I keep feeling like there is something more I wish I could do for your family. I pray for you constantly. I wish I could take care of him myself and be his nurse. Even though the tube isn't the way things were supposed to happen, you are so right that it is giving his body time to rest.

Tanya

Sara said...

I told Tim Ringgold I was going to see if people could pray while they sleep...that's my plan tonight...for Bella and Daylon.
Stay strong...

Lauri said...

Jennifer,
I had heard bits and pieces about your little guy but reading all of your details just leaves me in awe of what he (and you) have to endure. You seem to be handling it like a real trooper and your writing is articulate--you express your emotions as well as the realities you're facing so well. Where do we get the where-withal to endure the difficult things we have to endure? My prayers are with you and your little family.

much love!
Lauri

Anonymous said...

I am praying for Daylon and your entire family, and have been since I found out about him, and that he has Junctional EB, like my beautiful Granddaughter Leah had. I pray that his little body will get the chance to rest, heal and get those transplant cells growing. Judy T. (Leah's Grandma)

BRIAN AND BROOKE said...

My heart sank as I read about what you had to go through today. I go to bed thinking of you guys and wake up thinking of you. I am eager to get onto blogger to check the most recent post about Daylon. I am happy he did good through the surgery and now his saturation level is 100 and an very happy he can REST!! He has been through so much pain already, now he can get lots of rest and let his body do its job and have those cells grow!!
Daylon we all love you, rest well sweetie...you deserve it !! Your such a trooper!!

Linda said...

Hi Jen: Saying extra prayers for Daylon and for your whole family. Please remember you are not alone. So many people are praying for your precious son. Now he can get the rest that he needs and let those cells grow. Grow Cells Grow!!! Love Leah's Nana (Leah's other grandmother)

Stacey at Mommiverse said...

Saying prayers for Daylon and your family and sending as much positive energy as I can. My heart goes out to you all and you've been in my thoughts constantly.

brett said...

Hey guys,
It's Brett, and we met in Clinic. I am Rafi's dad, rdeb little girl who was patient #8. We were also sent to the PICU and intubated for 8 days. I know what you are feeling and I want to tell you that the doctors on the PICU are incredible. The nurses you will get around the clock are also top notch. Tim Ringgold has my phone number if you have any questions or just want to talk.
Brett

Geri Kelly said...

Praying for all of you

Anonymous said...

Praying for you'll. sg

The Fishers said...

Praying for your family.

The comstocks said...

You are so strong I can see where your little guy gets it from, prays are with you!

Jen Burns said...

I'm crying as I read this. Father God, merciful, gracious, loving, kind Savior, you are our hope, you are our strength. Please Jesus heal Daylon! You are mighty to save and give us our hearts desire. Heal Daylon Lord Jesus in your Holy Name! Amen!

Kristyn said...

I sit here reading this and crying my eyes out. Man what a battle !! so glad he is resting now. He needs that so much. Now you rest Jennifer ! we are all praying night and day. we love you guys!

Anonymous said...

I hope ya'll know that you are in so many peoples thoughts and prayers. I have been following Daylon for a while and he is such a strong little boy! I tell everyone I can about his story and ask for prayers for your entire family. I am so sorry you all are going through this and have to watch him be in pain. I know how bad I feel for him, I can't imagine how it must feel to watch him go through this. I am thankful he is finally resting and pray that he only gets better from here! You are in my thoughts, good luck!!

Patrice said...

Although it's nothing like what you are going through, I do know that terrifying feeling of watching your child go purple and watching the doctors bring him back while you stand in a corner, helpless. Jonah coded on his second day of life because of all the pain meds. It is SO scary. I'm so sorry he ended up needing a tube and that it came about in such a scary and uncertain way. I am thankful that he can rest through the worst of things, though, and am praying that the mucus leaves and he can breathe on his own again ASAP. You guys are so strong, even if you don't feel it. So, so brave. Take courage, God is right there with you. Praying you feel his loving arms and continue to be filled with HIS peace. Praying for strength, hope, and healing.

Aviles Family said...

Jennifer,
I don't really know what to say. I look forward everyday to see if there are updates on your sweet Daylon. We pray for you every night and I hope that while he is resting you can rest too. You and Brian are amazing in how you are handling this trial in your life. I can't even imagine what it must be like.
Thank you for letting us go through this process with you and your family. Let me know if there is EVER anything we can do.

Anonymous said...

Thinking about you, Daylon and your whole family. What a scary day today. Hope Daylon is better when he wakes up.
Martina

Anonymous said...

Seems like my comment didn't get published - just wanted to say that I'm thinking of you and hope Daylon gets better soon.
Martina

The Jones Family said...

I had to call the temple this morning to submit some family names to the prayer role and added your son's name as well. He is in our thoughts as we read your daily updates.

sharon kaye said...

Jennifer, I just can't even imagine. I keep thinking, how much can one family go through. We love all of you and pray for you. It is a blessing that Daylon can rest for a bit and maybe you can get some rest also.

theartfulgardener said...

Your family is in my thoughts and prayers everyday and especially today. I hope that peace will finally come to all of you when Daylon wins this battle once and for all.

Julia said...

I have been following since Patrice posted about your family on her blog. I had not checked-in for a few days and I was sad to hear that things had taken a turn for the worst. Stay strong and know that him resting without the pain and discomfort he was feeling is the best thing for him. Praying for Daylon and your family!

Anonymous said...

We are praying for Daylon. You family is beautiful. Your blog is inspiring. I hope your little fighter is out of pain; this process is very challenging. You are dealing with such grace. This transplant has to be one of the toughest things for your family. Caleb looks so proud and brave too. Many good wishes and prayers for all of you. Love to Daylon in the Northeast!

Anonymous said...

Thinking of your sweet baby..I'm so sorry to hear that things are so rough for him.

BRIAN AND BROOKE said...

I have been praying and thinking of Daylon all day..since I read this post a few days ago. Just wanted to say you are all loved so much and Daylon is such a special boy and he touches the hearts of everyone!!

Sara said...

Praying for you guys. I know what it's like to see your own child code right before your eyes and to have another on a ventilator at one point in her life; sitting at the bed side hoping and praying everything turns out ok. Hopefully this will allow his body to heal and for the cells to grow, grow, grow!!