Home Sweet Home

Tyler and I came home yesterday after a shortened 3 day visit at the PCICU aka 7East aka Pediatric Cardiac ICU. Not a bad place if you aren't having major surgery. All of the nurses are wonderful and so nice. They become like family. And the doctors are always there to answer questions, explain things and talk about swimming and kids.

So here is the detailed story. Day 1 Danny dropped me and Tyler off at the waiting room around 6:30. There was no bed in the transitional ICU or ICU so we waited in the waiting room which isn't all that bad. Less anxiety for the little man, quieter and less like a hospital. They brought us up to the 6th floor, got Tyler and mom prepped on his cath and brought him to cath lab within about 30 minutes. Small world, the 1 pre-op nurse and surgeon both went to BYU. Maybe that happens at Primary's, but usually not at UCSF.

Tyler got some verzed (a drug that makes you relax and forget the event which Tyler was enjoying). Got in an IV, got him to sleep and he was ready to go. They debated a coarctation in his PA that was from the Sano Shunt, but decided not to since it would be done during the Fontan. Everything looked good. Pressures looked good. His AV valve was moderately leaky, which we were aware of from previous caths and echos. But his cath surgeon thought he looked good for surgery.

Tuesday morning the surgeons get together to discuss Tyler. There are three main things that they look at prior to Fontan. The first and most important that qualifies a kid is the pressures. If their pressure is too high, the child will not sustain a Fontan and it is a no go. That isn't a great scenario, but can be decreased with meds. Tyler's pressures looked great so that was no big deal. The second thing they look at are other issues, such as leaky valves. His AV valve was the most concerning for Dr. Azakie. He said that he is just about at the 50% mark of Fontan candidates that he sees. That isn't horrible, but also not 100% ideal. So they look at how he is doing at home, what his pre-op med levels were and see if the kid would benefit from more time or would benefit from the surgery. In Tyler's case, he is doing fairly well at home and on a very low dose of blood pressure meds, so Dr. Azakie said that he would like to see if a more reasonable dose of blood pressure meds would help his AV valve and ventricular function.

He said we could probably go forward with the surgery and expect to be in the hospital another week or two or postpone it and see what a higher dose of blood pressure meds would do. His cath surgeon said everyone has their opinions with logic and there is no black or white for this situation. So we are home with increased meds. He is on 5mg of enalapril 2x/day and 1ml of lasix 2x/day. The increased dose of enalapril could affect his kidney so they will monitor that with blood work. He will have a holter monitor and echo this week as a base line and probably be reevaluated in 3-6 months for surgery if everything goes smoothly. It generally takes 3 months for the medication to make a difference. Dr. Azakie felt confident that this would help so we feel at peace about things. He is getting headaches which is not great, but doesn't seem to be dizzy or not tolerating the meds.

Danny gave Tyler a priesthood blessing and it said that the doctors would be confident with his pressures and function prior to surgery, so I have peace and feel good that this is a necessary step to get us there.

People have asked if we are dissapointed. I think it is hard to hear that your child is not the perfect candidate for a Fontan (whatever that means). It is a reminder that your child really does have a MAJOR heart condition and his heart is working really hard. With that, I do realize we are so very blessed to have meds available to Tyler to get him there and doctors that are some of the best in the world for HLHS. They know what is best and I have total confidence in their judgement. I do feel so blessed that if we wanted, Tyler could have received a Fontan. Perhaps not under the optimal condition, but he is a candidate. That is a blessing!

I can't speak for all, but Danny and I have been blessed with experiences in life that make you realize so much is out of our hands and in the Lords hands. Including his perfect timing for things. We had so many people praying and fasting for Tyler that I know that this was very much guided by a higher power and what is best for Tyler. I feel at peace about that and that is all that really matters. We have learned to go with the flow and do whatever is best. With medicine you really don't know what is best from one day to the next. Plans and conditions change and you have to enjoy the now and gain patience.

I think it would be different if Tylers quality of life wasn't very well. I have a feeling these next couple of months are going to be months to relax and enjoy each other before the next major surgery.