A week from now, at this time, my 4 month old will be in the middle of open heart surgery. It makes me physically sick every time I think about it. I wish I had a little compartment in my brain that I could put all the thoughts and worries of surgery and recovery in, and be able to go on with my life without it effecting me. I am trying, I am really trying.....not so much for me, but for Katherine, Will and Charlotte. Man, it is hard though. I can't seem to find that compartment.
Many people have asked questions about the surgery and what it involves. Next week will be busy for us. Monday, we meet Dr. Tweddell, the cardiac surgeon that will be performing Charlotte's surgery. He will walk us through the surgery and answer any questions we have. Wednesday, we go in at 9AM for pre-op testing. This will include bloodwork, an EKG, and a chest X-ray as well as signing all of the consent forms. We were told to plan on this taking 3-4 hours. Wednesday is also Katherine's 5th birthday, so after the pre-op testing Mike is taking the rest of the day off so we can do something fun to celebrate. Thursday, the day of surgery, we have to be at Children's at 7AM, surgery is scheduled to start at 8AM.
The surgery itself should take between 4-6 hours, however the actual repair will only be a portion of that. Charlotte's defect is pretty complicated, but in a nutshell, she has a couple holes that need patching as well as one "common" valve that needs to be made into two. According to the cardiologist, the holes will be "easy" the valve work, not so easy. The first hour or so will be spend putting in all the lines and having the anesthesiologist sedate her. It will also take time before and after the repair for bypass. Surgeons can't work on a beating heart, so she will be on bypass for the surgery. For some reason, this is one of the scariest parts for me. After surgery, they will do an echo and she will stay in the operating room until they think she is ready and stable enough to be moved to the CICU (cardiac ICU). She will most likely stay in the CICU for her entire stay, unless they need a bed and she is stable enough to move to a different unit. It is nice that Children's has a separate CICU, as she will not be grouped together with kids coming in with different types of infections that may be contagious and dangerous for her to be exposed to. Depending on how she is doing, she may or may not come back from the OR on a vent. Because she has Pulmonary Hypertension, chances are she may need to be a vent for a few days.
We are looking at at least 7-10 days, possibly two weeks in the hospital. We took a tour of the CICU a few weeks ago; the facilities there are pretty new and really nice. The parents can room in with their child , and each room has a private bathroom for their use as well as a pull out couch. We plan on having one of us there the entire time she is in the hospital. As far as visitors go, we have to fill out a list of who we approve of during the pre-op. We are sticking mostly to grandparents; Katherine and Will are allowed to visit because it is not cold and flu season, however we are going to play it by ear and see how Charlotte is doing. Maybe after the first few days when she is off the vent and most the lines are out, we don't want to scare them, but I do think it is going to be hard for them not to see her for that long.
There is a 90% chance that this is the only surgery she will require. If, for some reason, the valves are still leaking, she may have to have another open heart surgery as a teen/young adult. We pray that this isn't the case. Our cardiologist was very insistent on having Dr. Tweddell do the surgery because "he is the best." She believes that, even though the other pediatric cardiac surgeon is very good, Dr. Tweddell is Charlotte's best shot at not having to have another repair in the future. Fingers crossed. It gives me a little bit of peace of mind knowing how highly ranked Children's heart center is, and what fantastic doctors they staff. I have said this before, but we are truly blessed to be 15 minutes away from that hospital.
I will be updating this blog often while she is having her surgery and then during recovery. We are not allowed to have cell phones in the CICU, so any messages left on here or emails are much appreciated!
For those wanting to know more than the "just the basics" of her defect, here is a great resource: