Monday, March 19, 2012

Preparing for Surgery...

I have started to write this post a few times already but just have not been able to get into the right mindset to complete it. I don't know why I am having such a difficult time with writing this. Scratch that, I know why. It is because the topic that I need to write about is one that I have been trying to avoid thinking about, Jacob's upcoming surgery. Before we get to all of that I have a few other updates. If you are on Facebook you have probably seen some of this stuff on my page but if you are not an avid Facebook user here it is!

Today is Daddy's birthday! Happy birthday to the most amazing husband and dad. We love you so much and are so proud of you and all you have accomplished! 


I have been working very hard with 2 other heart moms (Ruth and Michelle) and the American Heart Association to get this law passed during this legislative session and we did it. The bill passed both the House and the Senate and is awaiting the Governor's signature. This means that hopefully by the beginning of next year ALL WV NEWBORNS will be given a pulse oximetry screen prior to being discharged from the hospital. This cheap, non-invasive test can detect a severe congenital heart defect. Congenital Heart Defects affect 1 in 100 babies and some infants are sent home un-diagnosed from the hospital. This could lead to complications or death. This simple test can save lives. I am so excited that this bill passed and can't thank everyone enough for helping us by writing your lawmakers and supporting this bill! 



Aidan decided his brother was getting too much attention so he decided that it was time he was in the spotlight. Last Friday he was playing with his friends at my moms house. They were racing and his head went right into my mom's car rim. His head split open and we ended up at the ER for five and a half hours. I was talking to my mom and her neighbor and heard it hit.  When I looked over I thought, well he must have skinned his knee. I ran over and saw the blood dripping from his head down his arm. His forehead looked like it had a huge hole in it. You would think I would be used to seeing stuff like this I mean come on I saw Jake with his chest wide open. No, I could not even look at it. It looked HORRIBLE. Thankfully my moms neighbor is a nurse so she ran home and got a bandage and taped it onto his head. He was so scared of going to the hospital. He broke my heart because as we were sitting there waiting for her to come back with the bandage he asked me if he was going to die. I held him and told him of course he was not going to die. Then he asked how long he had to stay at the hospital. The poor kid is so used to Jacob staying so long he thinks if you go into the hospital you stay. I assured him we would be home that night, and thankfully we were!

I have to brag on my brave boy. He was AMAZING. We got to the ER around 4:30pm, of course they were slammed. When we first got there I was very concerned. His eyes were rolling back in his head and he kept falling asleep. I kept waking him up and told the staff multiple times that I was trying but he was passing out. Finally after a hour and a half maybe longer they took him back to get a CAT scan. He thought it was awesome that he got an x-ray of his head and the nurse even gave him a copy of the x-ray to take home and show daddy. Back to the waiting room we went. I had masks on all of us and we stood by the door. The ER during Flu Season was the last place I wanted to be but it was Friday Night so it was our only option. It was 8:30pm before anyone even looked under the bandage at the wound.

e cried when the doctor gave him the bee stings (shots to numb the area), after a few shots he told the doctor "I think your done now lol". Once that was over he was so calm and talked about lego ninjas the whole time. He then preceded to tell the doctor that he gets to stay up past his bedtime. The doctor asked when that was. Aidan said "My bedtime is 9 o'clock but my little brother has to go to bed at 8 o'clock". The doctor asked him "How late are you going to stay up?". Aidan made a pffftt sound and answered back "Uhhh past 9". You could almost hear the "Duh" he must have been thinking lol.  Then the doctor said well how long past 9 and Aidan just said "I'm done talking now" haha. Gotta love that kid. The doctor finished up and gave Aidan a balloon and Popsicle. He told me I am in trouble because Aidan is so smart!

Another 45 minutes and we were discharged and finally home by 11pm. Sheeesh, seriously these boys are giving me so much gray hair but they are worth it. We have been putting neosporin on his head a few times a day. He had his stitches out last Wednesday. It will probably scar a little but shouldn't be bad. I can already see the boys using their tough guy scars to pick up chicks lol.


I can't believe Jacob will be two years old this week. My baby is growing up so fast! He has been doing AMAZINGLY well. He has been so happy. I can't get enough of him laughing, smiling and just being a toddler. Jacob is interacting with us so much now. For his birthday we got him 13 new baby signing time DVDs. He LOVES them. I will update more next weekend along with pictures of the birthday boy and his cake. Right now I am exhausted and have to go to bed but I wanted to let everyone know what is going on with his upcoming surgery. We have got everything pretty much nailed down and this time next month we will be getting ready to head to Philadelphia for the next step in our journey.

Our Schedule:
April 22nd: Leave for Philadelphia
April 23rd: Swallow Study and meeting with Cardiac Anesthesia

April 24th: Heart Echo and meeting with Cardiology
April 25th: Airway Reconstruction Surgery

So we will leave for Philly on April 22nd. I have our name on the list for the Ronald McDonald House but they have been full for months so I am PRAYING that they have an opening. I may be there a month or more so we can not afford to stay at a hotel. It is really hard to plan for how long I will be gone because we are not sure what surgery they will end up doing.

First let me explain a little bit about the vocal cords. When you talk your vocal cords are closed so you can make good sound. When you breathe they open to allow air through. Jacobs are pretty much always closed. They are tethered together by scar tissue and are unable to move. He has a tiny pin hole opening which he is breathing through. This is why he is such a "Noisy" breather. Imagine breathing through a tiny straw. This is how Jacob breathes all of the time. Click here to learn more about "Normal Vocal Cords".

Jacob is obviously a very high risk patient so CHOP wants to open up his airway using the least invasive method possible. First, they are going to try and go in through Jacob's mouth, cut the scar tissue and balloon it open. This would be the least invasive route however it doesn't work very often especially on thick scar tissue like Jacob has. If it does work this is the best case scenario. Jacob would only need to be on the ventilator for a day or so and may even be able to come home in a week.

They have booked the OR for him for the entire day in case that doesn't work and they have to do the complete airway reconstruction. For that they will need to go in through his throat and cut out the scar tissue and open up the vocal cords. They will have to use a piece of his rib to create a graft which will them be inserted into his airway to hold it open. The recovery process for this surgery is much more difficult. Jacob would need to be sedated and remain on the ventilator for at least a week while his airway heals. They said that if he has this surgery then we will be in Philadelphia for about a month.

Regardless of which route they take Jacob will have to learn how to breathe, swallow, eat and do everything airway related all over again. They said that no matter how small the manipulation of the airway is they will have to adjust and may even choke on their own saliva. He will also need to have scopes done every month and then every two months for a while to make sure the airway is healing properly. Opening up the vocal cords is a fine balance between taking to much or to little. If they take too much then it can ruin Jacob's voice. His voice will be affected regardless and may be raspy however the extent will depend on how big the opening is in his vocal cords. If they take to little then he will need to repeat the surgery.

I am praying for the first route however preparing for the second. It is hard to really plan because I don't know what surgery they are going to do. We won't know that until the they get in there and see how the scar tissue responds. Andy, Aidan, my mom, Jake and myself are all going down on the 22nd. Andy and my mom plan to stay for about a week and a half then they have to come back to WV to go to work. If he is released in a week then we can all go home together! If we have to stay for a month then my mother-in-law "Mimi" is planning on flying to Philly to help me with the boys. This way I can be close to Aidan and have someone to relieve me so I can go eat. I hope they give Jake his own room or have a chair because I will be sleeping there lol. There is no way I will leave him for a second without someone he knows. He already has such high anxiety at the doctors office I can't imagine how afraid he is going to be then. When they release us then Andy will rent a car and come pick us up. That is the tentative idea.

Sorry again it has been so long since I have written. It is just hard to find the words sometimes especially when the subject matter is something that I fear so much. I know Jacob needs this surgery and can't wait to see him breathe without struggling. I just wish to God I could take away the pain and do it for him. It never gets easier handing him over. So we will take it one day at a time, one second at a time and pray Jacob sails through this surgery like he has done in the past. 

Until then, you will find us playing outside and enjoying the beautiful weather!