Sunday, June 24, 2012

Great Results...

We are back from Philly and excited to announce that overall we got Great News!


We left on Wednesday and headed back to our home away from home (CHOP). We had to be at the hospital at 6:45am on Thursday morning for Jacob's scope. We checked in at the Cardiac Prep and Recovery Unit and they took Jake back to prep him for his Broche. Jake was not a happy camper. He wouldn't let the nurse do anything without crying. We met with his surgeon and cardiac anesthesia and then they gave Jake Versed. For those who don't know much about this drug, it is the ultimate "Happy Medicine" lol. It basically calms them down and also has a bit of a amnesiac effect. Jacob had his head resting on my shoulder and I thought he was falling asleep. All of a sudden he popped up his head and started CRACKING UP. I couldn't help but to laugh at him. The medicine had taken effect. He didn't even mind the nurse checking his temp and other vitals which he usually hates.

The best part about Pre-Op was Jake's oxygen levels were 87 and above almost the whole time! This is great for him.  Before his airway surgery he would usually be between 78 and 83 but never high 80's. I have a pulse ox at home but only check it if I have reason to be concerned. I hadn't checked him since we first got home. I had hoped his oxygen level would go up after surgery but wasn't sure if it would. 78 to 85 is pretty typical for a Hypoplast but 87 is WONDERFUL!

Jake went back for his surgery shortly later. His surgeon Dr. Zur came back up less than an hour later to let us know that everything looked FANTASTIC. It took them longer to place the IV than to do the actual scope. His airway looked so great that he doesn't need another scope for 6 months!!!! That is great because they usually do another in 3 months but she said the airway has healed beautifully and she couldn't be happier. Dr. Zur said she doesn't expect any scar tissue to come at this point and thinks he will continue to do well.

I discussed with her what we should expect with his voice and function of his vocal cords. They are both paralyzed and it would be extremely rare for the function to come back at this point so most likely they will always be paralyzed. That being said he should still be able to talk. His vocal cords are still close together even though there is no movement. They basically opened them up enough to get air through but not too much that way he could still speak (Before it was covered scar tissue and only had a pinhole opening so he couldn't move enough air through). Jake was so vocal the past few days. He isn't saying words but he is making so many sounds. It is like he is babbling all of the time. He is starting to put words together as well. He will clap and say Yay! He will say Yeah and is mimicking us so much more now. It is amazing the progress he has made in the past month since he had his surgery. I am very hopeful and excited to see his progress.

I also talked to her about the strider we have heard since his surgery. She said there was some Laryngomalacia.
Laryngomalacia (literally, "soft larynx") is an unusual condition, in which the soft, immature cartilage of the upper larynx collapses inward during inhalation, causing airway obstruction. 
It was not bad but could cause a little noise when he is active. She said it should go away as he gets older and there is nothing they would do for it right now. His airway looked beautiful and the laryngomalacia was very small.

Dr. Zur said he may be able to stop his Prevacid in about 6 months (after the next scope). I could not have been happier with how everything went. We were brought back to see Jake and he was not the giggly boy we saw go off to the OR. He was PISSED! It took a while to calm him down but he did great and his oxygen and blood pressure looked perfect so we didn't have to stay long and he definitly didn't have to spend the night in the hospital. While waiting to be discharged Dr. Zur asked plastics to come take a look at the black blistered area on Jacob's head. I had asked her if they could since it was not found prior to being discharged after his surgery. I told them about the infiltration that happened with the central line. They looked at it and said it was a pretty big and bad blister but it has already started falling off. He said that it is also being held on by his hair and once the edges curl up more I will have to cut the hair behind it so it will come all the way off. I talked to them about how his hair was falling out. They said that with a blister that bad it is common for the hair in the area that was infiltrated to fall out all at once but it should all grow back. It will probably take at least 6 months before it grows back.

We were discharged from the hospital and made our way back to the hotel. It was kind of interesting because I got in the wrong lane and we ended up in Camden New Jersey lol. After fighting with the GPS on my phone we decided to do it the old fashioned way and my mom found a sign back to the Ben Franklin bridge. A few minutes later we finally were back at our Hotel. Jake was pretty fussy most of the night. He wanted to go home so bad. He kept bringing me his shoes and going to the door and waving bye-bye. It was so sad he didn't understand we had another whole day of testing.


The next day we had to be at the hospital at 7:30am. First we took Jake to have a ultrasound of his clot. He HATED this and screamed pretty much through the entire thing. After the ultrasound we went to hematology to discuss the clot in his jugular. This part was not the best news. Not what I was expecting. The clot hasn't changed at all. The GOOD news is that the clot has not gotten bigger. The bad news is his body has not absorbed any of the clot and at this point it is unlikely that it will. The hematologist said that after a certain point the body doesn't absorb it but turns the clot into a scar. Basically it fills in the jagged edges of the clot. It is the bodies way of "Fixing" what is wrong. It then hardens. The blood needs a way to move around since it can't go through that vein so it builds a bunch of smaller branches around it. She explained it a really great way. The juggular is like a super highway. When the highway is blocked the body created smaller backroads to move blood through. Those backroads are called collaterals.

They want us to go to Cincinnati in 6 weeks to do another ultrasound. If it is not changed at that point it most likely won't ever go away. I was concerned on if it could move and go to his brain and cause a stroke but they said that at this point he is not at risk for that. It is hardening and becoming a part of his body. The body basically looks at it like if it can't make it go away then it will just make it a part of it. So that was a big relief to hear. The shots (Lovenox) is doing it's job because it has been preventing more clots from forming in that area. She said if the next ultrasound shows that it is the same then they recommend going off Lovenox because the body won't be at risk for more clots forming at that point. It will be scarred over completely. Jacob's cardiologist at CHOP said that she wants him on the shots for at least 6 to 12 months. Probably because he will be having another open heart surgery in a year or two (Can you say vomit). Hematology is going to consult with her and see what she wants to do about the shots. He will at least be on them another month or two. Most likely he will continue to be on them longer but I am hoping we may be able to go to once a day instead of twice.


Our last test of the day was the Swallow Study. This was the one that we were really anxious about. Jacob didn't want to drink any of the barrium but they were able to see a few swallows. He did NOT aspirate at all, even with the super thin liquid that is like water consistancy! This is GREAT NEWS! ENT cleared him to eat any foods he wants. That was the biggest thing I had hoped for as far as eating. Just for him to be able to eat meals again and his cookies! So that was wonderful to hear. He is also allowed to start transitioning to thinner liquids. Because she was not able to see him gulp a ton of the liquid she was not comfortable with just giving him a cup and letting him chug at home. It makes sense that we need to transition. We have a good plan. I am going to start mixing his sippy cups to be necter thick. It is about half as thick as the "Honey thick" he was on. I am going to give him one to two of these a day and still use his tube about 2 times a day or to make up for whatever he doesn't drink from the cup. They told me how I can naturally thicken his liquids without buying the expensive thickeners. I can put apple sauce in apple juice, pudding in Chocolate milk etc. Then as long as he does well with the Necter thick then we can go back to thin liquids. I am also controlling his portions of food since he is a crammer (He shoves tons of food in his mouth to the point he can't chew well). I will also be controlling his sips from the sippy cup at first.

When we go for his scope in 6 months I am also going to see speech and if he is no longer using his tube we will discuss getting the g-tube REMOVED! It will probably take a month or two to get him back to his normal eating and transition the liquids but I am so excited we can start moving in that direction. Jake was super excited because he was able to have what he has been asking for all month...


After his appointments we went to the cafeteria and ate so we made sure to get him the biggest cookie we could find since he did so well! He of course started cramming it in his mouth so I had to break it up and give him small pieces.

We didn't want to watch Jake be sad all night at the hotel again so we decided to hit the road. Had the weather been cooler we may have stayed but it was over 100 degrees and there was not much we could do. So around 2pm we were packed and started our 9 hour journey back home. We got home around 11:30pm. It was a very long day but worth it to wake up in our own beds!

I had told Aidan that if Jake did well on his test we were going to throw him a COOKIE PARTY! I am true to my word so tonight I invited my parents, my sister and her kids over. Andy's mom is also in town so she was here to celebrate as well. I made some cookie monster cupcakes because what is a cookie party without the cookie monster! I had to improvise on the eyes because the store didn't have what I needed so i used coconut. I don't think they turned out too bad considering I threw it all together in a few hours. We all sang "Happy eating day to you..." Jake was glowing he was so happy.

It was a great night.

• Airway looks wonderful
• Clot hasn't changed
• Jake can eat solids and start transitioning back to thin liquids
• Follow-up with hematology in 6 weeks at Cincinnati Children's to check clot
• Follow-up with ENT in 6 months for another scope of his airway
• Follow-up with Speech in 6 months to evaluate getting his tube out
• Possibly getting off Prevacid in 6 months
• Unsure of when he will be done with Lovenox
I can't thank everyone enough for all of the prayers that were sent up for our little warrior. We couldn't be happier with all of the results. He is doing so well and I see progress daily with his speech and development. I am so hopeful and could not be more proud of my boys!

Here are some more pictures of our cookie party! 


  1. The cupcakes look so good. Love the song and he looks so happy. Becky Goodman

  2. Gosh Kath, this is SUCH a great update! I am so excited for you - and LOVING all these pics! Someday, our boys MUST meet!!! xoxo