An interesting turn of events...
I just thought I would post an update on our crazy bi-lateral journey. Our surgeon from CHOP called a few days ago and told us that CHOP is again doing bi-laterals. He said that they straightened all the stuff out and Isaac could be one of the first ones he gets in for surgery. He originally told us he could get us in on August 4th. Today his office called and offered to have Isaac in on July 9th. This is sooner than our September 10th surgery date at GBMC. Ian and I thought about it and prayed and we feel like GBMC is the best choice. Besides, we already waited this long, what is a few more months. I never really had a "warm and fuzzy" feeling from anyone at CHOP. They all did their jobs, but never seemed really and genuinely interested in Isaac besides the details of the job. Another thing is that our surgeon from CHOP would not write me a letter of medical necessity for Isaac when we were fighting the insurance company. He and the rest of the "team" at CHOP feel like bi-laterals are beneficial, but not medically necessary. This is insanity to me. Of course, it isn't a matter of "life and death" if Isaac can't hear out of both ears. But then, it isn't a matter of "life and death" if he couldn't hear at all either. I told the surgeon this and he didn't really respond to me. He is a really nice guy, but he didn't help us when we had no hope of resolution even after repeated attempts from myself and the Let Them Hear Foundation. This was the biggest deciding factor for me. I do wonder if other parents of CHOP patients have had similar experiences in this. Fortunately for us, everything is working out well and we have another wonderful facility to transfer to. NOTHING in this bi-lateral journey has been easy, ordinary or without tears. I can only hope and pray that we are making the right choices for Isaac. After all, we are doing this for him because we love him and want the best for him. Is 2 1/2 months that much longer to wait for a group of caring professionals who helped us when no one else would? I don't think so. We will be taking our business there.
posted by Shiloh @ 4:36 PM
7 Comments:
Shiloh,
I think you are making the right decision. I wonder how many CHOP patients/parents feel the same way you do. Maybe that is why they have an opening so soon!
2 1/2 months is not that long to wait when Isaac has a lifetime of hearing ahead of him!
You've been on a rough journey. But you are paving the way for others. Hang in there! I admire your perseverance! Someday Isaac will thank you like I did to my parents.
Very, very interesting...
You are doing the right thing! It is so important to have a great relationship with your team. When you began posting about the new hospital there was a calmness in your voice.
Isaac is so lucky to have you working so hard to give him the best!
Drew's Mom took the words right out of my mouth...
As soon as you started talking about GBMC, I sensed that you felt very much at home there. Your relief and peace in the decision came through in your posts. Nothing is more critical than having a team you have faith in. It sounds like you have found Isaac's Medical Family.
I have heard amazing things about CHOP. I have a friend with a 18 month old who has had two open heart surgeries there and the level of care she has received is beyond anything I have heard of from any other hospital.
But, it is obvious from what you have said that they seem to be set up to handle the very extreme medical cases - not the more routine surgeries our kids have gone through.
They seem to be missing the point that while a CI surgery may be routine to them, it is *not* routine to the parents.
I am so happy you fought so hard and found the place Isaac belongs!
wow, now that certainly is an interesting turn of events. I agree with the others that when you wrote about the new team, it was clear that you were far more impressed with them on a personal level, and when we're dealing with our children's well-being, that is totally priceless. Good for you guys. What's another couple of months? Nothing.
xoxo
I'm so glad things are working out in Baltimore and you're finding a good fit for your family. That means a lot!
For what it's worth since it was brought, we're in the CI program at CHOP, and, granted we're not pursuing bilaterals, but we've had a totally awesome experience there; great relationships--even people who have no professional connection to Ellis know who he is and take in interest in how he's doing. I really Heart CHOP. I'm sorry that you had a bad experience. :(
But I'm REALLY glad you're in a place you love and are receiving the care you need for your family. I look forward to seeing Isaac and his cool new ear come September. (and it'll be much less stress for you to drive to Balto than to Philly)
Hugs and prayers as you move to this next step!
YOU AND IAN HAVE MADE THE RIGHT DECISION. IF THE PARENTS ARE UNSURE OR UNCOMFORTABLE WITH SOMEONE THE CHILD PICKS UP ON THIS. CHOP WAS NOT AS INTERESTED IN ISAAC AS GBMC. GBMC WILL BE THERE FOR YOU AND ISAAC THROUGH THE WHOLE PROCESS. WE KNOW THAT YOU FOUND GBMC THROUGH MUCH PRAYER, AND "PRAYER CHANGES THINGS". DEE
I'm so happy for you that everything is working out for Isaac! It seems that you are comfortable and happy with GBMC, so I think you are making the right choice.
I will say that we are a CHOP family and we are beyond happy with the care and attention they have provided to us. I did learn last week that they will be starting up their bilateral program, and after discussing with our surgeon, I understand the hospital's philosophy on providing equal care for all, which was the driver for the halt of the program in the first place. I'm thrilled they have worked through the issue. I do have a different perspective, though, b/c our daughter isn't considered eligible for a 2nd implant right now anyway b/c she does have some residual hearing in her unimplanted ear.
Regardless, I think a very important consideration in the CI journey is to feel that you are getting the right level of interest/attention from the medical and audiology team. I am happy that you have found a "home" for your family. I wish Isaac and your whole family the best of luck on this next stage in your journey!
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