Friday, July 29, 2011

Punch Drunk

Hanging with Mommy before surgery.

I just wanted everyone to know that Jacob did wonderfully. He won't need surgery for a few months. GI said he looked wonderful. ENT said his scar tissue is a bit thick so when he has surgery they will book the O.R. for enough time to do the major airway reconstruction however they are still going to try the minimally invasive procedure first. It is still surgery on his airway but the recovery time is much better since they would not be cutting through his neck. If it does not work then they will go ahead and do the major surgery.

GI placed the GI probe. 2 hours later Jacob decided to yank it out. We had to wait another 2 hours to get it in and are praying he doesn't pull it out again. I feel bad though because his arms are covered so he can't grab it. He is sleeping now. He has not eaten since last night. We are waiting to see if the X-ray turned out good before we can feed him. Hoping to hear soon because I need to feed my baby boy. The GI probe will remain in overnight and we will be discharged around noon tomorrow.

Funny moment of the day:
They gave him Versed to calm him before they took him to surgery. I was about to cry and told him I loved him, just then he started cracking up. He then would crack up laughing every time someone looked at him or talked to him. It was so funny. How could I cry when he was so hysterically happy lol. Thank you to my beautiful warrior for making it easier for mommy today.

The anesthesiologist said he laughed the whole way down to the O.R.

Here are some pictures of our beautiful boy drunk off of his meds lol.

Love you Jacob!

Thursday, July 28, 2011

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!

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.

The Bakers

Tuesday, July 26, 2011

Philly Bound...

I can't believe it has been a MONTH since I last posted on here. I was doing good updating weekly for a while. Sorry for the lack of posts. The boys are both doing great. Jacob is walking EVERYWHERE.

We have been preparing for our next journey to Philadelphia. We are leaving tomorrow morning and will be in Philadelphia through Monday. My mom, Aidan, Jacob and myself are driving there and Andy's step mom (MiMi) will be flying there to meet us.

Here is the plan for the next few days:

Driving to Philly and "Trying" to relax with the boys
8:20am: Meeting with ENT
9:45am: Meeting with Cardiac Anesthesia
12:45pm: Meeting with GI
2:00pm: Jake will be getting a heart echo to check his function. Jake will most likely be fed up by this point so pray they can get a good picture of his heart. It will be a non-sedated echo.

Sometime during the day I am dropping off 12 Sisters by Heart packages to CHOP's Center for Fetal diagnosis and Treatment to be given out to new families about to have a child with HLHS.
Jake will go under cardiac anesthesia and have scopes by ENT and GI. They will give us the time on Thursday evening. GI may leave a probe in that will stay in overnight. If they leave it in then he will be spending the night at CHOP in the cardiac unit.
Hopefully if all goes well then Jake will be discharged Saturday morning. If he is back to himself then I will bring him back to the hotel where my mom and Mimi will watch the boys. I will then go back to CHOP to attend the Cardiac Seminar they are having. The seminar is from 8am to 5pm and will discuss their Single Ventricle Survivorship Program. I won't be able to attend the whole conference but I would love to at least get the information. I am really interested in enrolling Jake in the survivorship program when he gets older. I also look forward to hearing what advancements have been made and seeing some friends I have met along this journey.
If Jake is back to his old self and we feel comfortable doing so then we hope to take the boys to the beach for the day for some relaxation. We will of course have to play it by ear and also see what the weather is like as well.

Planning this trip has been very emotional for me. I know Jake will do great with the scopes, I am just nervous about what happens next. After the scopes I will discuss surgery with his doctors. I don't know if they will want to do his surgery right away, in a few months, next year. I know we will be in the best possible place for Jacob and I feel better knowing his cardiac team is there. I am just so nervous about this surgery. Jake is a fighter, he is the strongest boy I know. As his mother I just want to protect him and make the best choices that I can make for him.

I know that his breathing is not normal. Now that he is walking (Which he is doing everywhere now!) his breathing is very labored and I do worry about what it will do to his heart. I would love to see him walk across the room without needing to stop to breathe. I know he NEEDS this surgery, still it never gets easier handing him over. So many "What ifs" go through my mind. I hope to be able to ease some of these fears after talking to the specialists. Anyone that knows me also knows that the more I know the better I feel. There is so much about this surgery that I don't know. I know that they need to shave a part of his rib to use as a graft... I don't know how they need to get the shaving. I know that his voice will be affected... I don't know how much. I know that he will need to be on the ventilator for a week while he recovers... I don't know how he will tolerate that. I know that if they don't get enough of his vocal cord removed this time then he will need to have the surgery again... and possibly again.

I am nervous. But I have faith and most of all HOPE. I have seen Jacob come back from so much worse. He is my warrior and I will be by his side. I KNOW if anyone can beat this next hurdle in our journey it is him.

I will update when I can. I am not sure if I will be able to update Thursday after I speak to the doctors, it will be a LONG day. I will update Friday when we get Jacob settled and let everyone know how he did and what the doctors think. Please pray for Jacob. The last time he had these scopes he screamed and thrashed for 2 hours straight and there was no GI probe that time. Also, Please pray the doctors can make the right choices for our beautiful boy. And if you could, pray for strength for our entire family.

Thank you so much for all of the prayers and support.

The Baker Family