Children’s Hospital of Philadelphia
Tuesday Scott and I flew to Philly to check out CHOP (Children’s Hospital of Philadelphia) and to meet with the surgeon there Dr. Spray. I don’t even know how to explain what this experience did for us. I guess in the most simplest form it gave us tremendous hope. The hospital itself is amazing.
The cardiac center is incredible. On their website they describe as a ‘hospital within a hospital’ well, that is no exaggeration. The cardiac center has its own intensive care unit, step down unit, radiology department, pharmacy, labs, I could go on and on.
It was a 15 minute (ugly drive) Philly definitely could use a makeover – from the airport to the hospital. In the lobby a women named Liz met us.
I had been talking with her on the phone for the past couple weeks setting this visit up and I was looking forward to meeting her because she had been unbelievably helpful to me on the phone as well as incredibly nice. Meeting her in person was no disappointment. She stayed with all day long, gave us a tour, introduced us to Dr.’s, answered a million questions, and was AWSOME. She used to be a nurse in the heart center so she was very familiar with everything we were going thru and was very encouraging and understanding as to the emotions we had. THANK YOU LIZ!
We started the day with a tour. Liz showed us where Logan would pre/post op and then the CICU (cardiac intensive care). That is where Logan will be until his tubes/lines are out and he is eating independently, then he is moved to a step down unit where he would stay until he is ready to go home. Liz showed us the play room, teen room, classroom, family rooms, nutrition rooms, and sleeping rooms that are available just for the cardiac kids and parents. The hospital is very accommodating to families.
Next we met with Dr. Spray. He was totally different from my previous experience with pediatric heart surgeons. He was very nice, calm, soft-spoken, patient, and spent over 30 min. with us. He was amazingly confident though too. You would have thought he was describing a tonsillectomy or something when describing this heart surgery. He said that the Bi-Directional Glenn was very straight forward and that they do more than one of these a week. He said that what makes this surgery slightly trickier and slightly more risky is the TAPVR (Total anomalous Pulmonary Vein Return) repair. Dr. Spray was very positive and optimistic and when we left we felt so much better about Logan’s surgery.
It was a long day we had gotten up at 5AM and got home at 11:45pm.
On Wed. we met with a general pediatric surgeon at the Cleveland Clinic regarding his malrotated intestines. He said basically said that Logan should not have any surgery done before his heart is fixed and even then it can still be questionable. The problem with doing this procedure is that it is to correct a hypothetical problem. A problem that may never happen, a volulus. He said that a volvulus is like a volcano, it may never ever erupt, the problem is when it does it is really bad. Basically a volvulus is when the intestines twist on themselves and cut off the blood supply (like a hose.) We aren’t going to worry about this right now and we will discuss this later on in the year after we know how his heart surgery goes.
Akron Children’s Hospital
Thursday Logan had a cardiologist appointment with Dr. Patel. He had an echo done, he is no longer too happy about these. Next time he may have to be sedated. His AV valve is leaking more than last time (not great) and that was the only news there. Dr. Patel said he may have a plan so that the surgeon doesn’t have to touch some of the pulmonary veins which would reduce the risk of the veins becoming obstructed after surgery. Dr. Spray gave this (pulmonary vein obstruction after surgery) about a 5-8% chance of happening.
So here is the real news, his first OHS will most likely be in the next 3-4 weeks. Dr. Spray said that it makes no difference in long-term outcomes whether the first OHS is done at 4 months or 6 months. So, everything being equal Dr. Patel would like Logan to have surgery before cold/flu season begins – before November 1st. (BIG SIGH) Dr. Patel is going to discuss things with the cardiologist at CHOP and then get back to me next week on when they want to get started. Before Logan has his surgery they will want to do a cardiac catheterization procedure to gather more information about the function of the heart. Here is an illustration, basically they just thread a tiny tube up through his artery and some how this gives them accurate readings on different pressures in the heart and lungs.
Logan had a good week. He is still sleeping a lot (like most of the day) but when he is awake he is smiling and cooing. He loves to play with his hands and he has started to grasp toys. He started to giggle out loud and I found a ticklish spot on his chest and on his side. He is just the sweetest little thing.
But how do they go from this to this so quickly???