So, I will take you all back about six months to share another one of our crazy stories. Yes, weird things just seem to happen to us. So, every 6 months Amelia has routine check-ups at Spina Bifida clinic. I just can't express how frustrating clinic days are!!! They typically consist of getting a kidney ultrasound, getting x-rays of her spine, seeing the urologist, orthopedic surgeon, neurosurgeon (once a year), clinic coordinator, and sometimes we toss in a physical therapist, occupational therapist, nutritionist, and a therapy dog. Plus, getting vital signs, height, weight, etc... Then you add in all of the WAITING... It is a LONG, tiring, frustrating day. Most of the time I leave with more questions than I had to begin with.
Anyway, six months ago we went in for our routine check. Everything was going well-got the x-rays, got the ultrasound, got to see the urologist early, and then we headed up 2 floors to clinic...and we got there a few minutes later than I had hoped (because we were seeing the urologist early). I knew this had the potential for a long wait, and I was right. We waited in the waiting room for at least 2 hours (minus the 20 minutes we took to go grab lunch during our wait). During our wait, I saw the orthopedic surgeon leaving clinic- that is never a good sign!!!
Finally we get called back to a room for more waiting. At this point we are only waiting to see the orthopedic surgeon. Eventually an orthopedic resident comes in the room and tells me that her regular doctor had to leave, so she would talk to me about Amelia. In my mind I am thinking "seriously, you have never seen my child and think that you are going to be able to offer me some insight on the progression of the curve of her kyphosis, potential surgery on the curve, and what to do about the skin breakdown on her back." So, I play nice and let her do her thing, and then as she is about to leave she says, "by the way, the radiologist called and said that there appears to be a problem with her VA shunt. I think the neurosurgeons have left for the day, so they will get in touch with you tomorrow." At that point my heart sank!!! We have been down this shunt "problem" road before (8 times to be exact) and know that it usually means surgery or hospitalization.
So, for about the next 20 hours I am a basket case worrying about what is going on. Her neurosurgeon finally calls me, and tells me something that I had never expected to hear. The tip of the tubing of her VA shunt has broken off just below her clavicle and appears to be in her heart (excuse me, did he just say there is tubing floating around in my child's heart). He was not exactly sure of how we would proceed, but was going to make some phone calls and get back in touch with me. In the mean time we went to parent/teacher conferences (and could not pay one bit of attention). About 4 hours later I got a call from one of the pediatric cardiologists. He told me that we would need to go ahead and get that tubing out, which he could do with a cardiac cathterization. He was available to do it in 2 days. WHAT!!!!
So, 2 days later Amelia breezed through the cardiac cath. What was so weird to us, was that the "tip" of tubing was at least 3 inches long. Also, to sign a consent to have a foreign body removed from your child's heart just sounds so wrong.
The day after the cardiac cath, Amelia's neurosurgeon called to check on her. At that point in time we decided that it would be in Amelia's best interest to just wait and see if her shunt was going to fail or not. Despite the tubing being broken, it could still drain the extra fluid from her brain. Well, we were not so lucky- about 4 weeks later she started to show some subtle symptoms for shunt failure. We went in for several tests, which confirmed my concerns. So, in November she had her 9th shunt surgery. She had the tip of the shunt placed back into her abdomen (it is a VP shunt again). She did have to have a laproscopy with the shunt revision to find a good spot for the shunt to go, just because she has had so many abdominal surgeries and so much scar tissue. That was a tougher surgery for her. She had a lot of discomfort and was just wiped out for a few weeks.
Six weeks later we went for our follow up with her neurosurgeon. He was pleased with her progress and said to just see him again in a year as long as everything is going well. But, I could not leave without knowing how many time he had seen a VA shunt break like that. Keep in mind, that he is very experienced, been practicing for 25-30 years. His response was, "It can happen, but I have never seen it before." I tell him, "of course it's going to happen to us then." His response was, "some people get all of the luck."
So, needless to say Fall was a bit stressful for us. But, I am happy to say that Amelia is doing great right now. We do have spina bifida clinic in a few weeks, and I am hoping that it is boring and uneventful.
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