Blake's Surgery Update Part Two....Spina Bifida and the Ace Malone

Sunday morning was Mother's Day and part of Kami's package included a sweet
handmade sticker for Blake to give me to wear on Sunday.
He was so excited!

I forgot to mention that Kaia had her last volleyball tournament this weekend also.
We were so lucky the hospital and tournament were in the same town!
It was convenient and I was thrilled to be able to watch some of Kaia's Volleyball games too.

My sister and her family came to visit Blake on Sunday morning and it was his first morning free from his pole....bride! They all went down to the second floor and played foosball and rode around in large wagons! The visit was fun and so much appreciated by Blake.

But Sunday afternoon found Blake hooked back up for more drugs to finish his clean out.
Grandma and Papa Kennedy played card games with the kids ....

and they all found the pinball machine in the Teen Room on our hospital floor!

The nurses all got a kick out of the Goal that Dave and Blake came up with on Saturday.
He actually made it to seventeen and then the 3rd floor ran out of Jello. It was hilarious!

Sunday night Blake settled in for bed to get ready for his big day on Sunday.

 I stayed with Blake each night in the hospital.
They actually had fold away twin sized cots that were pretty comfortable!

I got up to use the bathroom right before midnight and found these outside of Blake's room....

Two gurneys prepped and ready for him and his roommate's surgery the next morning.
All of a sudden I was not OK. My heart raced. I had a pit in my stomach
and I never stopped praying until I finally fell asleep an hour later.

Monday morning Blake was anxious. They wheeled him into pre-op earlier than planned and I was still at the hotel getting showered and ready for my day. They were AHEAD of schedule by almost two hours. Really?! It was a good sign, but threw off Blake's plan.

He was placed on the gurney while Dave had run to grab a pop tart from the second floor thinking we had another hour until they took him. Dave and another nurse ran up to him just in time to take him to pre-op. I met him there 5 minutes later. By then though....Blake was out of sorts. They tried to give him the calming drug orally and he wanted nothing to do with it. He was determined he was going home and not doing the surgery.

He was panicking and the anxiety attack was coming. Soon we would be holding him down as he tried to escape from the bed and the gurney. For his own safety they decided to surprise stick him in the leg with a heavier sedative and he screamed. I held his hand and whispered into his ear the whole time trying to calm him. He fought that sedative harder than any child they had seen. As long as I talked to him he stayed calm, so the nurses told me not to stop. His body finally gave in to the heavier sedative and they wheeled him quickly into OR because of the emergency sedative drug they had to use without IV or tube.

Minutes after wheeling him in a CODE BLUE came across the speakers. The nurse in our room ran in the same direction as our little boy. I looked at our Child Life Specialist that had been trying to play video games with Blake to keep him distracted and she tried to assure me that it wasn't for Blake but I wasn't sure I believed her. She kept trying to talk to me and ask me questions and I was sure she was trying to keep me calm. Dave said the whole time she was asking me questions he was thinking...'Great I just held down my son so they could give him a drug that just killed him.'

Then we all realized at the same time that the CODE Blue was followed by ICU and a room number. Our nurse came back in. Blake was in the OR and was doing fine. I burst out crying finally allowing all the emotions from this past weekend break through.

We found out later that Kaia had freaked out a little also when she heard the CODE Blue but Grandma and Papa quickly explained that ICU was different than the operating room and she felt comfortable too.

Little Mister was with us, at Blake's request and we nibbled on him to distract us as we waited together while the doctor performed the ACE malone on Blake in record time. I had also bought a chocolate cupcake but never had the stomach to eat it.

The Ace Malone is a form of an enema that starts from the top end or front end instead of going in the back end. Essentially the doctor goes into the abdomen through a hole in his belly button and a hole in the side of his tummy and uses the appendix, which is already tube shaped, and he connects the opening in his belly button to his colon using the appendix. Each evening we will hook Blake up to an IV bag of waters and insert a catheter into the hole in his belly button and run water into his belly button, through his appendix and into his colon for a nice powerful clean out.

Each day the procedure will take 45 minutes to an hour
and he should be bowel continent throughout the day!

Our doctor came out with a nice smile on his face and he said that the procedure when smoother than he expected and that Blake would be ready to use his ACE in 3 days!

Because of all the excess drugs that Blake needed...recovery took a little longer.

We kept the room dark and quiet. It was nice we were alone in the room.
The nurses had moved Blake's roommate to another room while we were in surgery to
give us all a little quiet. Dave and Kaia took advantage of nap time.

Blake held tight to Dave's hand and everyone got rest!

Later that evening Blake was given a light dinner and he was so excited.
But two hours later...it all came back up.
Our discharge for Tuesday morning was put on hold.

He slept peacefully through the night and ate a pancake and a sausage for breakfast the next day while I prayed that it would stay down! It did...as well as lunch so at 1:30 pm we were given the go ahead to head home!!

We had the best care while at Shriner's.
Blake and I had planned before we left for the hospital to bring sweet little gifts
for him to give to his nurses each day.

He loved handing them out and one of the nursing students, who was just finishing up and it was her last day at Shriner's before she graduated, cried. We told her she was going to be an amazing nurse!!
We had her 3 nights in a row and she was one of our favorites.

We head back to Shriner's tomorrow morning to learn how to use the ACE.
I should probably warn them that a sedative might be needed to touch the surgical site.
Blake won't let any of us get near it without hyperventilating.

Oh and the amnesia drug they gave him that they said he would remember nothing about the stick in the leg and everything before surgery....wasn't strong enough. He remembered it all!

Blake wants to make sure that I thank you all for the prayers and comments and cards.
I've been reading them to him and he is so grateful.

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  1. God bless him. He's been through a lot. But here's hoping this helps a lot of his difficulties! You are AMAZING!

  2. What a journey April. You are a faithful mama!

  3. Sweet boy, so glad to hear it went well...I hope that this gives Blake the confidence that he deserves to go to school and enjoy it! You are one amazing mom, your attitude is truly inspiring :)

  4. I'm glad things went well. The Malone is a wonderful thing. It can takes some adjustment getting the solution right but once it's figured out it's amazing. My son has had his over a year and it was definitely the best decision for him.

  5. April,
    My son is scheduled to have this procedure done next month due to issues with Hirschsprung's Disease. Just reading your post has made me feel a little more at ease. Thank you!

  6. So glad everything went well with Blake's surgery! You've been in my prayers. Your family is inspiring, so loving and with amazing senses of humor!

  7. Oh...how stressful for him to freak out as you were going in...poor little monkey....can i ask what happened for him to need this operation...you probably have said it before...sorry if you have...but its great that its over now and things can only get better from here...take care...xxx

  8. I'm so glad everything went well. I hope you are both recovering and have mastered this new part of your life. Way to be tough Blake!

  9. Praise God! I'm so happy that things went well and you're all home :)

  10. Praise God for Shriner's, for you as parents, for Kaia, amazing sister, for Blake's outstanding attitude, for the Ace Malone, the skilled doctors, etc., even the awful GoLytely. Brace yourselves, that's what is used to clean out us over50s for colonoscopies, but we get to drink it. Yuk Anyway, I'm so glad you're all well, in good spirits, and I hope he has a long time before any more procedures.


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