Thursday, July 29, 2010

Adventures in Philadelphia

Pre-Op Testing...

Jacob had a busy day today. He started out the day pretty fussy. I think his belly was hurting him again. Off to CHOP we went for his cardiology appointment. I was full of emotions entering the hospital again. Although I know they saved Jake's life I couldnt help but to have a dreaded feeling of the unknown. It was almost like I had never left.

First we had his weight, blood pressure and SATs checked. He was a little over 13 pounds (without a diaper). Back home he weighed 13 pounds last week with a diaper. So he is still on track weight wise.

This did not go over so well with Jacob. He started out ok but when she went to his neck to get the pulmonary vasculature and the shunt he screamed bloody murder. After about 10 minutes of screaming, I finally had to tell the tech that he needed a break and I held him until he calmed down. This kid was a trooper though and they finally got everything they needed.

After the echo Jake had his normal EKG and we met with Dr. Szwast. She was very impressed by Jacob's weight gain. She said that most hypoplasts are not even on the growth chart so it was really great that he was. She said his color looked great. Overall she seemed very pleased with our little guy... how could you not be! I expressed my concerns of his teething and tummy troubles and him being fussy. I asked if they thought he should be admitted so I can work with nutrition. Dr. Szwast was very against this because it exposes him to the hospital environment and he could pick up a virus prior to surgery. I totally agree with that. So I will talk to nutrition once we are admitted for surgery. She kept all of his meds the same except his lasix. She increased that from .5 to .6ml. She also mentioned trying to get him to take more of a bottle since I said he loved it so much. So we will definilty meet with speech and see what we can do.

The news I was not expecting to hear was that Jake will have to have another pre-glenn cath afterall. Originally it was thought that he would not need one since he just had one a few months ago. It is very common practice to do cath's prior to the Glenn. Most institutions do them. They said they just want to make sure they have a clear picture of all of the pressures in his heart so there are no surprises during surgery. The echocardiogram does not give an accurate read of those pressures. An MRI would give a little better picture but still not as good as the cath will. Because Jake has always had this rapid breathing they want to make sure they know the pressures in his pulmonary vasculature. Dr. Heydarian also agreed that this is a good thing to do. So although I know he needs it, it is still another procedure and I am still nervous.

Jacob's Cath will be on Tuesday, August 3rd. His surgery will be Wednesday, August 4th. I was nervous about them being back to back but was assured this is common practice. Please continue to lift Jacob up in prayer as next week will be very rough for him.

The rest of the appointment went well. I spoke with the nurse practitioner about what to expect and went over some other questions I had. I have to wait and see if they can circumsize Jake and remove his skin tag on his ear. They are going to have urology and plastics come see me while we are in the CICU. Typically they do the circumcision before you are discharged if the patient does well with the Glenn. If not then he will have to wait until his final stage, the fontan. Honestly I just want Jake to be safe. If this is all to much for him then we can wait. I just know the earlier the better as far as his discomfort and awareness.

I also met with genetics. I asked them about a chromosome test they did on Jake last time and she looked it up for me. He showed no added or deleted chromosomes. They check over 600 and he came back as "same as the normal population". I assumed this was the case since they never got back with us but it was good to hear it!

I went over some research they are doing and I think we will participate this time. Basically they would just take some extra blood from Jake through a access point he will already have for surgery. They would also take a piece of discarded tissue from his heart during surgery. It will not cause Jake any added stress or pricks since this is frome something they will already have. the tissue is removed anyway when they access the heart. They can use this to help research HLHS and the cause. Andy and I would also give DNA samples and go over our family history. My hope is we can help find some answers about this disease and maybe get some information for Jake and Aidan. One day they may have kids so it will be good to give them something as far as their odds of having a child with HLHS.

Jake learned how to grab his feet today! He has been playing with his hands for a while and the poor feet were left out so MiMi introduced him to his feet. Jake was amazed by them and loved hanging on to them...

Jake seems to be teething lately. He is chewing on everything and slobbering. The hands are always in his mouth. He also loves teething rings. It is hitting the poor kid all at once!

It was a long stressful day for Jake so he slept most of the afternoon. Tomorrow he will have the pulmonary consult and then we hang out until he is admitted on Tuesday for his Cath. The Ronald Mcdonald House has been full so we are at the Comfort Suites. I am praying they get an opening soon. I will update tomorrow night about his pulmonary consult. Until then enjoy some pictures.


Hanging out with Mommy at the Hotel...

hmm... how do I get that in my mouth?

I leave you with the best picture of the day!

Have you ever seen a more beautiful site!


  1. Kath,

    Jake looks great. His personality really comes through in the photos. Give him a big kiss from me. We'll be praying all goes well at the pulmonary consult tomorrow.

    Love to you,

  2. Oh and be sure to give Dr. Szwast a big hug from me the next time you see her. :)

  3. Laurie CunninghamJuly 29, 2010 at 6:43 AM


    He looks amazing!! Love the smile!! Praying for you guys.


  4. He is so absolutely adorable! We will keep you in our thougths and prayers next week for Jake's cath and surgery.

  5. It's Jake & Olivia once more. Even though we're separated by a time zone and several hundred miles these two insist on doing just about everything together! Best of luck to you in the coming week, I'm thinking of all of you!

  6. In answer to your question, NO, I have never seen a more beautiful sight, I miss you guys so much! Can't wait until I see you again this weekend....He looks amazing..You Rock Little Peanut xxx ooo