Monday, August 2, 2010

Day +39

Daylon and his new toy from Aunt Michelle, Uncle Deven and his new cousin, Elizabeth. Thank you!

"When you reach the end of your rope, tie a knot in it and hang on."
-Thomas Jefferson
This post comes with a warning: I have a feeling I'm going to sound really arrogant. I apologize. I'm well intended! LOL! :)
Daylon had a good pretty good day yesterday. He did have some bradycardia moments where his heart rate would dip into the 50s but over all, things were looking up. We all just wanted a quiet day and that's pretty much what we got. This morning (middle of the night) I got several calls from the nurse, telling me that Daylon was having a brady episode. The doctors all think it's a brain stem issue, but I'm becoming more and more convinced it's a sedation issue. Let me explain.
Daylon is on four pain meds/sedatives. The doses given of each drug is ridiculously high. I'm not complaining, I like him comfortable, I'm just saying. Every time we get a new nurse, as soon as they nurse from the shift before leaves, the run over to the computer to check the prescription. Then a minute or so later they tell us, "I've been a nurse for ____ years and I've never seen anyone given such a high dose of _______ (fill in the med)!". I'm not joking when I tell you we hear this regularly. The nurse last night said, "normally you would give .6/kg for a high dose... not 6.5/kg! All these meds would knock the three of us out (me, Brian and the nurse)! How is he still moving?!". Anyway, once he's calmed down enough and sleeping, his heart rate drops. I asked every doctor I talked to yesterday, if that could be the case just trying to find some peace in the situation and they all said the same thing, "I don't think so.". Well, this morning around 8am they decided to try to go down on one of his sedatives (new attending today), and guess what happened. He went from low 60's to 100 heartbeats per minute! HA! I knew it!
One of the 2am calls from the nurse was about Daylon having pneumonia. Wait. What? How is this possible? His vent is on really low settings and everyone keeps telling us, "Well, at least his lungs are clear now". Over 24 hours his lungs can go from clear to pneumonia? I'm obviously confused by this. I asked to see the last two x-rays and the thing that was weird to me was the odd wire going from the slightly hazy "pneumonia spot" on his right off his arm. I asked what it was and the resident and a nurse played a bit of a guessing game, after which they decided that it must be the heating wire on the breathing tube. I asked if then the hazy spot could be where the ET tubes meet and the resident looked at a minute and then sheepishly said,"probably". Oh! I forgot a part! They had started to treat him for pneumonia and he had an allergic reaction to the med. they gave him. Anyway, tonight we're staying for the 1am x-ray and I'm going to hold the tube above his head so they can get an accurate view of his lungs. I hope, hope, hope that it's nothing and Daylon's lungs are healthy. We will see!
This afternoon we were suprised when Dr. Tolar came by. This guy can calm the most insane moments. He just the kind of guy you want to be around. Anyway, we especially wanted to be around him today! He had the best news! He told us that he doesn't think Daylon's brain damage is as bad as his colleagues think! Yay!!! He thinks Daylon has Benign Macro Cephalous. Basically, big head that holds a normal sized brain. When he mentioned this I was like, "Oh! My daughter Keira had that!". He was so excited to hear that big heads run in our family! Ha, ha! I'm sending him both Keira's and Daylon's head circumference measurements from their first year (Thank you, Brooke!) so he can come to a clear decision with the MRI. I'm so glad to see that one of these doctors is willing to look outside the box! I love Dr. Tolar! He's such a great doctor!
I haven't given his numbers to you guys in a while so here they are:
Weight : highest 16.5/normal 11.6/current 13.2 (almost there)
BUN:105/less than 19/51 (getting close, but they're up from yesterday)
Creatinine:3.5/less than .58/.9 (lowest in weeks!)
Bilirubin:5/ less than 1.3/ .8 (woo-hoo! look at that baby fall!)
As you can see, his kidneys and liver are improving! FINALLY! 5 weeks in the PICU is draining, we need out of here. They guessed another month or so, if things don't get worse. I can't wait! 5D is so much more roomy and safe. If you're over there, it means life is rough but at least it's not critical.
I heard a quote today that stuck with me,
"Hope is faith holding out it's hand in the dark."- George Iles
Thank you for your prayers and support. You have touched our lives, and made us stronger.
Daylon's toesies
A RMH volunteer group brings in go-carts for the big kids and little 4 wheelers and yard racers for the little kids every Mon. night. Caleb, of course, LOVED the Lightening McQueen car and Keira was all about the speed!

Brian and I saw this sign on our walk to the hospital. We were cracking up at how pathetic it is that they HAVE to say it! This has the 'Tonight Show' written all over it!


La Familia! said...

You are soooo NOT arrogant! You are a mother! A wonderful mother who knows her child better than anyone else... I think Heavenly Father blesses us with this motherly sense... It's like a spidey sense! Soo glad to hear things are going better.. Your family is in our prayers always. Love, the Millers

jeanine said...

Never second guess mother's intuition. Doctor's have told me things about my boys... but I usually know better. Glad to hear things are improving!


Mothers know best! What a great example! I am SO GLAD you spoke up! I am sure at times it might be intimidating to say anything. Makes you wonder sometimes about the doctors. But seriously that is awesome news!!!!!! This might sound weird but reading it reminded me kinda like when you call customer service and you dont get a clear answer to anything and you kinda get the run around!!
You do not sound arrogant at all! You sound like a mother who knows what going on with the son :)
I am praying that his lungs are ok and healthy ... I hope for more quiet days for you guys! Oh, and what great news from Dr.Tolar.... I am so glad you really like him.
Daylon, buddy keep going strong!
The cars look so much fun for the kids... I bet they sure enjoyed riding them!

The McLaughlins said...

I'm so glad to read the good news tonight. Never give up. Never surrender. Daylon is so lucky to have you and Brian as parents to fight for him. Always follow your heart. Listen to Heavenly Father when he speaks to you. He's there holding Daylons hand. God Bless you!! Stay Strong!

Take Care,
Amber McLaughlin,CA

sharon kaye said...

I was so happy to read your post. Doctors don't always know everything--but they do their best. Keep fighting for Daylon. Heavenly Father is watching over him for sure!!!

Anonymous said...

You know your child better then any one. I so want them to let him wake up and show them Doctor how wrong they are. I want Your little guy to say Grrr again. Only God knows how things really are. so glad his Labs are looking better. Have you seen any pee yet?? Thank you so much for the updates. Praying hard. Brenda U. MN

Annalien said...

I am SO glad for the positive tone of this post today. I believe with you that Daylon will come through this. I have a 6-month old baby girl and when I look at her and love on her, I often think of Daylon and Bella and what it must do to you as parents to see your baby so sick! I am amazed at your strength. Keep holding on to God and each other. Praying for continued healing and peace. God bless!

Anonymous said...

OH, your sweet boy! He continues to amaze me - he has been through so much, but I plan to rejoice with you when you get back to 5D and are holding and cuddling your sweet Daylon!

Never worry about how you sound on these updates, your share your experience honestly which helps us to know how to pray for all of you. I can only imagine it also helps other families who are going through or entering the BMT journey against EB!

Keep up the good work!

Kim M
Waterford, Michigan

Leah W said...

I am so glad that God is showing you what to look for. He knows that you know that boy BEST.

Praying for amazing healing.

Marybeth said...

YAY!!! We are so glad things are somewhat improving... remember what I told you!! and I totally agree.. Tolar is amazing. WHen you feel it in your gut go with it and don't take no for an answer until you get the answer you want... You do know what's best!!! I think your miracle is coming. I have asked everyone I know to pray for you all as well. God is Good and your baby is strong like you, he already has the best odds.. You are doing a great job with everything. I have huge admiration for your updates and for your will to stay positive and keep fighting... You are amazing!!! This battle is one of the hardest to fight and you are still going strong and with little to no sleep I am sure. Remember to take of yourself too!! We are thinking of you and here for you if you need us.
HUGS and many, many blessings and positive thoughts are coming to you
Marybeth & Sam #7

Sara said...

Perhaps you and Time should consider a career change? Sometimes you guys seem to have the answers!
Loved this the good news!

Anonymous said...

I prayed for God's miracle over Daylon this morning, and then I read this update! Awesome God! love in Christ, Mary Chinn, Indiana

Angelique said...

Dr. Edling to the rescue! LOL We also LOVE Dr. Tolar. He gave us a different perspective on Bella's VOD that we'd not heard from the other docs. AND he can make things happen when they need to. Every time we finish a converstaion with him, I turn to Tim and I say, "I love that man!"

Mom to Many said...

Blessings from above!
I am so happy that you had a better day. And no you are not arrogant. You are just having a day where the tender mercies are raining down upon you. You needed this day. You needed to feel some good reaching to you from the darkness.


Anonymous said...

Don't listen and keep trusting your inner voice and instincts. The Dr's DO NOT know all, only HE does. Trust in the Lord and he will not leave you. God bless you all. Praying with all my heart for Daylon. God is sending you small reminders that He is there with Daylon and He is in control. That's why you were there to witness Daylon moving. Thank you for sharing your journey.

Anonymous said...

Hey, you guys are doing well, hang in there, every day is a day closer. He is quite a little fighter...well done and good for him. I am following your blog from South Africa, came accross is by accident. I have a 1 year old Cancer baby (In remission now, but he did chemo at 3 months) Its tough, but stay positive, he will get better, he is a brave little fighter.Will pray for him to have the strength for the fight ahead, and that the doctors take not of all the details regarding his treatment and that all is successful ok. Keep us posted, thanks. Tania Brown from Cape Town, South Africa.

C Rod said...

I check your blog almost every day hoping to hear some good news and today I was so pleased to read that things improved. My daughter was born one week after Daylon and I work with Dee, so I have followed your story and held my daughter in tears many nights praying for your sweet baby. He is such a strong little guy and you are such faithful and loving parents. I will keep praying that he continues to improve and that you have the peace that passeth understanding everyday you care for him. God Bless you all!

Anonymous said...

Keep your Faith. Don't let it waiver one bit. I am praying every day, through out the day, for a miracle. I know your son will get better, it may be a bumpy road with ups and downs but I know he will get better, I just know.

"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle." --A. Einstein