Friday, June 17, 2011

The Dates are Set...

I spoke to Philly today and it looks like we will be heading that way on July 27th. Jake will have appointments with ENT, GI and Cardiac Anesthesia on July 28th and his scopes will be on the 29th. GI may also put a probe in that will need to stay inside of Jacob until the following day. He will be spending the night at CHOP however we do not know if he will get to stay in the CICU or not yet. I would prefer him to be on the cardiac floor since he de-sats from anesthesia sometimes however the summer is a busy time due to elective procedures so they don't know if they will have a bed open. If not then he will have to stay in the PICU.

I am scared, nervous and anxious. Even though this is not his airway reconstruction surgery it is still considered surgery since it is done in the OR and Cardiac Anesthesia will be involved. Last time Jake had scopes he did not like the anesthesia and was already showing fear of doctors. He screamed and thrashed for two hours straight that night. Handing him over to the team of surgeons and doctors never gets easier for me, if anything it gets harder. I wish I could do it for him but I can't.

I know that Jake struggles to breathe. I know that they need to get more information to prepare for surgery. I guess that is what scares me the most. After these scopes we will have the discussion on when to do his airway reconstruction. The surgery I have been dreading. Any surgery is major for a hypoplast but this one is big. As his mother I just wish that I could make it all better for him but I can't. I can only be there for him and do my best to make it easier on him. It's hard because despite Jake's tiny airway he seems to be doing so well. It's hard not to let the what if's get to you but I am trying. I know that even though Jake appears to be doing well despite the small airway its too risky to let it continue. His heart needs to be protected and this labored breathing is putting more wear and tear on his already weak heart.

So despite my fears I am TRYING very hard to imagine how great he will feel once it's done. There are so many "What if's" in this life that if you dwell on them you will literally go insane. I need to let his team of doctors figure out what the best route is for Jacob and have faith that he will continue to beat the odds and kick some HLHS bootie!

The good news is on July 30th there will be a educational conference at CHOP for families of children with cardiac defects. I am not sure how much of it I will be able to go to because it depends on what time Jake is discharged that morning. Still it looks interesting and I am hoping I can at least go and hear about the single ventricle survivorship program. I have been wanting to learn more about that and how to get Jake into the program. I am pretty excited to see programs being developed to improve our children's future!
Here are some of the topics that they will be discussing:
  • The impact of CHD therapy on neuro-developmental issues
  • Pre- and post-operative experience of the child with CHD
  • What's new in CHD research
  • Exercise, nutrition and growth for the CHD patient
  • Transition to adult care
  • Single Ventricle Survivorship Program
  • "In Their Own Words": CHD patients and parents share their experiences
  • Sessions for adolescents and young adults (ages 15 to 25)
Please continue to keep Jacob in your thoughts and prayers as we approach this next chapter in our Journey. Here are some pictures of my two beautiful boys... Enjoy!

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