My Little Rock Star!

Today went as well as I could have asked for. As you can see by the picture Jacob is also pleased with how today went. Jacob is such a rock star and I never tire of people telling me how AMAZING he looks. Here is a breakdown of our day.

8:20AM - ENT
We met with ENT and answered a ton of questions about our little guy. Then the speech therapist came in and talked with me about how kids handle these airway surgeries and what she tends to see with them. She was so great and answered every question I had. She said that Jake is actually the perfect combination for doing great after the surgery because he has a g-tube so they can get his nourishment in while he is on the vent but he also has a huge appetite and desire for food which makes it easier for him to adjust to the new airway. So many cardiac kids have an aversion to food. Jake is the opposite. He will have his own dinner then beg for mine lol.

I met with Dr. Zur and I LOVED her. She was so nice and spent a ton of time with us. She trained at Cincinnati where we had his original scopes and came very highly recommended by them. She said that looking at their images she was very optimistic and agreed that we should try the less invasive approach first (This made me SOOOOO happy). She said the rest of his airway looked BEAUTIFUL! It was just the vocal cords, they are tethered down by scar tissue. Dr. Zur did a scope through his nose to look at the cords while he was awake and she said that it looked like they were trying to move but couldn't due to the scar tissue. This is a great sign because that means the nerves might be ok. There is still a chance the nerve is paralyzed from his heart surgery, only time will tell.

Less Invasive Surgery:
Basically they are going to go in in using an endoscopic approach (through his mouth) and cut through the scar tissue. They would then balloon it open and we would see how it healed. He would need the vent in for a day (Much better than 7) and he would stay a few days to make sure he had no issues with swallowing/eating. If he was ok we could potentially go home in only a few days!

He would have follow up scopes in Cincinnati to check and make sure the scar tissue does not grow back. If it doesn't grow back then the procedure worked and we hit a home run. If it doesn't then we need to do the Airway Reconstruction surgery.

Airway Reconstruction Surgery:
For this surgery they would make an incision on his chest and shave a piece of his rib off. They would then have to open up his neck and insert the graft created from the rib into his vocal cords and snap it into place. This surgery would be much more invasive obviouslly. He would also have to be on the venitlator for a week and in the hospital for at least another week learning how to swallow with his new airway.

Of course we are praying the first approach works. Jacob is very high risk so I am glad they agree with Cincinnati and are going to try the less invasive approach first. Dr. Zur said she would have done it tomorrow while in there doing the scope but he is on Aspirin so they don't want to risk it. She said that she is not concerned about him because he is gaining weight well and has been doing so well despite his airway. She said that after they get the results of the scopes we will talk scheduling.

9:45 am - Cardiac Anesthesia
They basically went over his history and took his vitals. They discussed the procedure and eating/medicine information. The best part about this part of the day was she kept saying how Jake didn't look like a hypoplast. She couldn't believe how good he looked and kept saying he looked like a million bucks.... he is certainly worth that much (Literally after the cost of the surgeries lol). Ok all jokes aside it went great.

12:20 pm - GI
GI went well also. We discussed Jacob's eating and he examined him. He said we have a lot of room to move up with his reflux medicine. He also said that although Jake is doing great weight wise he would like to add some more calories. Jake is in the 25th to 50th percentile for weight and 50th for height. Since his height is growing more rapidly they want the weight to match. He said we should add carnation good start to his milk. I personally think Jake will love the flavoring. He also gave me more tips on increasing calories.

He discussed the procedure tomorrow and what they would be doing. GI's scope will only take about 10 minutes. They are going to biopsy some of the tissue in his stomach, intestines etc. They said in Jake's age they can get more information that way because it is hard to see everything. The main thing we need to know is if there is inflammation in the area of the vocal cords. If there is and he is refluxing we need to adjust meds and fix that because if it is irritated it is more likely that the scar tissue will grow back.

They are also going to put in a GI probe which is a small tube inserted through his nose into his stomach. This will have to remain in for 24 hours . It will measure the reflux he has and give them a better picture on what is going on with that so we can adjust his medication accordingly. The results will not be in for a few weeks but Jacob will remain in the hospital Friday night and be discharged on Saturday morning.

2 pm - Cardiac Echo
Jacob has been sedated for the last few echos he has had so when Dr. Szwast said she wanted this one non-sedated I thought... No way he will sit still. BOY did he ever prove me wrong. Jake had been dealing with the hospital since 8am so I thought he would be so irritable. He laid back with his legs crossed and watched Phineas and Ferb the whole time without fussing! I was in shock and oh so full of pride. He did scream at the end during the part where they put the ultrasound probe on his neck but by then they had the important information they needed. My son is seriously a ROCK STAR!

GIVING BACK
The highlight of our day was bringing Sisters by Heart care packages to the Fetal Center for Diagnosis and Treatment at CHOP. This is where new moms go to their appointments and prepare for the birth of their child. They are the only hospital in the country with a unit like this where mom's can have their baby in the children's hospital so they are right where they need to be for immediate care. It also allows the mom to remain close to the baby while she is still in the hospital.

I brought 12 Sisters by Heart packages with me to deliver to the unit for new moms. While waiting for Denise Donahue (My coordinator when I was pregnant with Jake) I saw the Doctor that delivered him. She was so excited to see Jacob. It was so fun showing off how great he looked. I told her about the packages and right away she said they had moms of HLHS babies in the unit right now and would LOVE for them to get our packages.

Denise came out and it was so great to see her. Denise is amazing, she is such a beautiful soul. I remember her calling me after I requested a second opinion from them and she was so compassionate and treated me like a friend I had for years. After talking to her I knew I had to deliver him at CHOP. Denise gave me a big hug and was so happy to see Jacob. I showed her all of the items in the packages and she was so excited to have them to give to their moms. She said she would bring some to the mom's in the Special Delivery Unit and give some to new parents who come in and get the diagnosis of HLHS. This is such a dream come true. To be able to have HOPE given to these parents. I also gave her a bunch of brochures and told her I would bring more packages when we came back for Jacob's surgery.

I was glowing after leaving there. It just felt so amazing to personally drop off these packages. Showing off my little Rock Star was pretty fun also.

When we were leaving we stopped by the cafeteria to bring back food to the hotel. I happened to see Dr. Rome who was the Dr. who performed Jacob's cath when he coded at birth. This cath saved Jacob's life. His atrial septum collapsed and blood had no where to go so his lungs flooded. Dr. Rome acted quickly and opened it up. Jacob was very sick and no one know if he would make it to his surgery but thanks to Dr. Rome he did. So it was not only Dr. Spray who saved our boy with the surgery but also Dr. Rome. I stopped him and told him who I was and what happened 16 months ago. I thanked him for saving my baby boy. Dr. Rome has always been very quiet and serious when I have met him in the past but today he smiled and thanked me for letting him see Jacob and for telling him. He looked as if he was humbled and it felt good to be able to make him see how he touches lives and saves lives. I don't think he is told that much. The heart surgeons get the credit and I think that the caths are overlooked some times.

I can't tell you how amazing I feel right now. I don't think today could have gone better. I am PRAYING tomorrow is the same.

Jacob's surgery will be at 7:30am, we need to be there at 6am. Please pray for a smooth surgery for Jacob and that he will tolerate the anesthesia and not have any problems tomorrow.

I will update as soon as I can.

Thank you as always for all of the continued prayers. God Bless.

Love,
The Bakers