Tuesday, July 16, 2013

The waiting game...

I would love to update you by saying we are finally Post-Fontan but plans have taken a different turn. Jacob's surgeon went home sick yesterday with an acute viral illness and his surgery was cancelled. It has been a crazy couple of days but here is an update about what has happened so far.

We arrived in Philadelphia Sunday evening. Yesterday our day began at 8am at the Cardiac Prep and Recover Unit. As soon as we were taken back and Jacob saw the hospital gown he started crying and yelling to go home. We finally got him changed and calmed down but he was not a happy camper. Thankfully we had the iPad so he could watch his favorite movie "The little Engine that could".

Child life came by and gave him some toys. They had a police car he could get in and ride so he cruised the halls for a while. I was excited to see that his oxygen levels were 86/87 the whole time we were there! That is awesome for Jake.

While waiting to go for his cardiac MRI we had our surgical consult and learned step by step what they would be doing in the surgery. We signed all of the paper work giving them consent. We also met with anesthesia to go over risks and sign those forms. Jacob's nurse gave him a cute train pillowcase and a "Shadow Buddy". The Shadow buddy is an adorable little doll with a heart line on his chest and a heart patch. He comes wearing a gown and with a bag full of items for the kids to use to "Treat" him. It is a way to teach kids about the surgery and what may happen to them. We named him J.J for Jacob's Journey. The boys (especially Aidan) loved playing doctor with him and fixing him up.

When it was time for his MRI Jacob was given versed (His happy juice) to help take the edge off. Unfortunately it did not work as well as it has in the past and he was still giving us a look like he didn't trust any of us. I went back with him while they put the mask on and put him to sleep. I hate that part, he fought them the whole way. He was not going down without a fight. The MRI took a few hours, while they had him back there and sedated they went ahead and did his echo and took all of his labs. I was so grateful for that because getting blood from Jacob is very difficult. Once Jacob was awake and drinking juice he was taken down for a chest x-ray. They also did an ekg and then it was time to get discharged!

Sleeping after MRI
Before we got discharged we learned that Jacob's surgeon Dr. Spray went home sick. Any heart mom can tell you that if you find out your surgeon is not there you kind of panic. We were told to go back to the hotel and plan on being back at the hospital at 5:30 am unless they call and tell us otherwise. Later that night we got a call that his surgery was cancelled because Dr. Spray was too sick to come in. They had no idea when we would be rescheduled and said they would call and let us know.

As you can see Jacob was really sad that his surgery was Cancelled lol.

I spent all morning today on the phone with people trying to figure out what is going on or where we could stay. The Ronald McDonald House in Philadelphia and New Jersey were both full and wouldn't even consider letting us in if they had room because Jacob was not admitted yet and there was no plan as to when he would be back on the schedule. I tried talking to the hospital and the RMH social workers but there was nothing they could do. We were already in our second hotel but it would be expensive to continue to stay there. We decided to come to Holiday Inn, in Cherry Hill New Jersey because they had a hospital rate of $63/night which was about half of the price of what we were paying in Philadelphia and there was no parking fee. In Philadelphia you have to pay $20 to $40 in parking fees (CRaZy)!

The GOOD NEWS of the day is that Jacob's heart echo and the preliminary MRI results showed that his heart function looks great. Clinically he could wait longer for his Fontan if he had to. Although that makes us very happy to hear, we don't want to have to wait until later this year for his Fontan because we are already here. My husband has used vacation time, we drove 9 hours and have already invested in this trip. If we were pushed back until the fall Aidan would be in school and Andy's vacation time would be used so he couldn't come either. We tend to think of the surgeons as super heroes but they are human and these things happen. I understand that but I also feel that Jacob should get priority since he was scheduled back in February and we have come all this way.

I called the scheduling department tonight but they said they still couldn't tell us anything. A short while later I got a call from the Chief of Anesthesia, Dr. Nicolson. She was so nice and apologized that we were not contacted earlier today. She said that Dr. Spray has only cancelled surgeries because of illness two times, this being one of them so he is really sick. He spoke to Dr. Nicolson earlier and told her that he would see how he feels tomorrow and IF he feels better then he will come in tomorrow. If he comes in they will meet and discuss if he is well enough to do surgery on Thursday. If so, Jacob will have his Fontan then. Everything depends on how Dr. Spray feels. Obviously we don't want him operating on Jake if he doesn't feel 100%. This is heart surgery on a child so he needs to be at his best. We also can not risk Jacob getting any illness which could hurt his recovery or worse. We spent weeks trying to protect Jacob from any illness so we can't risk him getting sick in the OR. Dr. Spray is an amazing doctor and I know he will not do anything that could risk Jacob getting sick. If we have to wait then we will but hopefully it is not too long!

We discussed the possibility of using a different surgeon. CHOP has three caridac surgeons. One of them is not in town, she is on vacation until late July. The other one is booked this week. So we are pretty much just in a waiting game. We need to take it day by day and see what happens with Dr. Spray. I was very concerned but I feel much better now that I spoke with Dr. Nicolson. She is a very good person to have in your corner when needing to get on the schedule. She is going to call me tomorrow after she talks to Dr. Spray and give me another update. We should have a plan then (I hope).

So 3 days, 3 hotels and a whole lot of stress but thankfully Jacob's heart looks awesome and that is the only thing that matters. He has also been talking like crazy since we have been here. He has been responding to questions and talking in sentences which is awesome for Jake. Thank you so much to everyone who has reached out to us. Your generosity and kindness has been greatly appreciated. Please pray that Dr. Spray is feeling much better soon and we get back on track.  Until then we will be hanging out in Jersey...

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