Wyatt

Wyatt

Sunday, September 22, 2013

Cleft Palate Surgery

We made it through surgery number 3! The surgery itself went well and although the recovery process was a little harder this time Wyatt is doing great. Let's start from the beginning.

On Wednesday, September 18th Wyatt was scheduled for surgery at 7:30 a.m. We arrived at the hospital at around 5:45. After two surgeries we know the routine. We got checked in, got our security badges and headed up to surgery. Here is daddy and Wyatt in the waiting room.


We didn't have to wait too long before being admitted to pre op. Wyatt hadn't eaten since 8 p.m. the night before but you wouldn't have known it. He was a champ. It helps that he is a little older now and can go longer in between feedings. He was happy to cuddle with mom and dad and see all the visitors coming in and out, from a comfortable distance of course.


He kept busy during the long wait playing with the toys at the hospital.



He loved this puppy toy so much he gave it a big hug.

They also gave us this mask to play with to help get him comfortable with it. Michael would hold it up to his mouth and blow a little air by his face. Wyatt thought this was a fun game.



The doctors came in one by one to talk us through the procedures and answer our questions. Dr. Lacey, Wyatt's plastic surgeon, stopped by first. The first thing he said when he saw Wyatt was, "He needs a haircut!" What do you think?


Dr. Meyer came in next. She is the ENT Wyatt has been seeing for his ears. While Wyatt was under for palate surgery she was going to check his ears and replace his tubes if needed. A couple different members of the anesthesia team also came in. The doctors and nurses signed off on the board as they came in and out. Sandy, the Child Family Life Specialist who was with us through the past two surgeries, was also helping us.


At 7:22 a.m. we walked Wyatt back to the "kissing corner" for the third time this year and said our goodbyes. We were happy to see him go easily with Dr. Clinton, the anesthesiologist.



 

Mike and I made ourselves comfortable in the waiting room keeping a close eye on the doors to the OR and the status monitors.



Dr. Myer came out a little before 8 a.m. She was done with her part. It turns out Wyatt had a double ear infection but his tubes looked good so she just cleaned his ears and tubes and we will follow up with her in a few months. She let us know Dr. Lacey was getting started.

A couple hours later Dr. Lacey came out. He told us the surgery went well, gave us instructions for care and talked to us a about next steps. He said Wyatt's lip looks great so he won't need another surgery until his bone graft when he is 7 or 8 years old. If he has trouble with his speech there is a chance he could have surgery to help correct that when he is 4 or 5 years old. We also learned he will have his first speech evaluation at 18 months.

At 10:13 a.m. Wyatt was moved to recovery and we were brought back to see him. I hate this part. It is hard to see him in pain and confused and disoriented from the anesthesia.


This time was harder than the previous two surgeries. He was pushing, squirming and trying to roll in my arms. They gave him a little extra pain medicine and that helped to calm him down. I asked the nurse how he did coming out of the anesthesia. She said they had to give him something to relax him so they could move him to his bed after surgery.




 

He did take a couple of oz of Pedialyte in recovery which was really good. A little before noon he was admitted to the hospital and we headed up to his room. I was able to carry him to help keep him calm.


The next 24 hours are a bit of a blur! I will do the best I can to describe what it was like. Poor Wyatt was in so much pain. It took a while to get him comfortable and he would rest or sleep for a couple of minutes but then wake up with the saddest cry until he fell asleep again. We took turns holding him.





 



Wyatt's face, lips and tongue were swollen and he had marks in and around his mouth from the procedure. He was very careful when swallowing and you could tell it was very uncomfortable for him. We got a peek inside his mouth and if it felt anything like it looked it was bad. Dr. Lacey took sections from the sides of the roof of his mouth to fill in the gap. The strips on the side will grow back. The doctor said it was a rob Peter to pay Paul kinda deal.

While in the hospital we had some visitors which was a nice distraction.





Wyatt started resting for longer periods of time in the evening. After each dose of medicine he would sleep for longer stretches. When it looked like he was finally settling down daddy went home to take care of Bella and get her off to school in the morning. It was just mommy and Wyatt for the night. He was up quite a bit but we did get a couple long naps, quality cuddle time, and caught a movie. 





He has to wear his no no's again. This time he had one on his leg too to keep the IV in. He has done well with the no no's in the past but now that he is mobile these things really get in the way of his fun.




He was doing better by morning but we had been having so much trouble managing Wyatt's pain and getting him to eat I was surprised we were discharged early Thursday morning. He would only take an oz or so of Pedialyte at a time and refused to take any formula. He felt good enough to play for a bit before needing a rest.



We got home around noon on Thursday. Wyatt still wasn't eating and just wanted to be held. He did take good naps and slept through the night. His troubles were with the pain and eating. When he wasn't sleeping he just wanted to be held. Luckily grandma came over to help out and take some shifts.





Wyatt really struggled with eating. He ended up throwing up the little he did eat and I was getting scared.


I sought out some advice from parents of children with clefts I met through online communities and talked with Anna, the cleft team coordinator at the U of M. A common theme among the advice was to take him off the codeine so we decided to give that a try. We thought this might help with his mood and stomach issues. Going forward we would just use Tylenol to help manage the pain. This seemed to help because by Friday morning you could tell he was feeling better. He even took 2 and a half oz of Pedialyte.

Soon after that some of his pureed food caught his eye while grandma was holding him in the kitchen. He went crazy like he wanted it so I watered it down with a little Pedialyte and spooned it gently in to his mouth. He ended up eating the whole thing! He still refused to take formula and even Pedialyte through his bottle but he ate his watered down purees very well. This has made a huge difference. Over time I have added Pedialyte, baby cereal and formula to his pureed fruits and veggies. Finally now on Sunday morning I got him to take an oz and a half of formula. Woohoo!

As far as surgeries go this was definitely the hardest but we made it through. A year ago Wyatt wasn't even born yet and we were thinking of all that would happen in his first year. Now three surgeries have come and gone. I can't believe it. It is strange and exciting to think of all the things that will be more normal for Wyatt now. Soon we will see him eat solid foods with ease and be able to suck and drink through a straw. It's the little things.

There is a warrior under this sweet baby exterior. Daddy says he does need a haircut though.



Tuesday, September 17, 2013

Getting Ready for Surgery #3


Wyatt's palate surgery is bright and early tomorrow morning.

Dr. Lacey is taking a staged approach to Wyatt's cleft repair and we knew before he was born he would have 3 surgeries during his first year. He had a lip adhesion in February, his lip and nose repair in May and now will have his palate repair.

Here is the technical part in case you are interested... To repair the cleft palate Dr. Lacey will reposition the tissue and muscle to close the cleft and rebuild the roof of the mouth. Incisions are made on either side of the cleft and a specialized flap technique is used to reposition muscle and the hard and soft components of the palate. The repair is then stitched closed. This will help Wyatt with eating and speech development.

After tomorrow we should get a break from surgery for at least a few years. This makes me so happy. Both Mike and I are in agreement we just want to get this over with. For some reason I thought things would get a little easier with each surgery but I feel like it gets harder. Each surgery becomes a little more involved and requires a little longer recovery. Wyatt just gets more and more active and understands more and that makes it harder too. We had preop yesterday and the nurses and doctor couldn't even look at him without his bottom lip sticking out. 

All this hasn't been easy but we face each challenge as it comes and keep moving forward. This journey has been made a lot easier with the support of our family and friends. I ask again for you thoughts and prayers as we get ready for surgery tomorrow.