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Andrew
Andrew's problems from the very beginning were much more severe
than Michael, our older son's, and some of the doctors
that cared for Andrew that first year just didn't seem
to want to involve us very much in the details of what was
going on, which was very frustrating for us.
Very soon after Andrew was born, he received a g-tube so that we could feed him since he could not
take a bottle at all in the beginning. Despite the g-tube, after we brought him home, he began to
have lots of feeding problems, throwing up almost everything that we gave him through his g-tube.
Eventually, he was admitted to the hospital to find out the cause. In the hospital for his feeding
problems, he suddenly stopped breathing and had to be intubated. Within a week he was trached and
we had to adjust to a whole new set of problems. We didn't take him home again for more than two
months.
Finally when we brought Andrew home, we also brought with us a roomful of equipment, cupboards
full of drugs and medical paraphernalia and home health nurses that, although were very nice,
pretty much eliminated any sense of privacy that we had. It was a very trying year.
Even though it was a tough year, at the end of it, Andrew was doing very well. He was able to be
decanulated, had his cleft palate repaired and had his g-tube removed. When Andrew sucked down
his first bottle by himself, we were thrilled! At that point, we decided to move back to Minnesota
so that we could be closer to our families and because of the excellent medical care Minnesota has.
Andrew has been hospitalized quite a few times since then, mostly with pneumonia. The last time he
was in the hospital, he left with a bipap machine and continues to use that at night during sleep.
Lately, he has been doing great. As I mentioned, a benefit of our decision to move back to
Minnesota was the exceptional medical care Andrew receives and we feel that Andrew has
continued to progress so well because of the care he is now receiving.
Andrew is in ninth grade this year and despite beginning speech delays, is mostly up to par with his
classmates. He continued to receive speech therapy at school and privately up until seventh grade.
He wears hearing aids bilaterally for his conductive hearing loss and used a sound system in class.
He has nebulizer treatments as needed and is currently on the drug Singulair, which seems to have
also helped keep him out of the hospital. He has severe scoliosis and was being watched for that
and eventually was admitted into the Titanium Rib program. The rods used are a type of growing
rod and allow him to continue growing while keeping his spine from worsening. He will probably
eventually require spinal fusion at the end of his growth. Andrew also sees a neurosurgeon as he
was diagnosed with Arnold Chiari malformation. He has a syrinx that has developed but after
insertion of a shunt, the syrinx has shrunk and is not causing any current concern. At this point,
without any immediate medical problems, Andrew seems to be a fairly happy fourteen year old!
[pmm 09/03/09]
Click here to learn about Andrew's ongoing Titanium Rib Surgery.
than Michael, our older son's, and some of the doctors
that cared for Andrew that first year just didn't seem
to want to involve us very much in the details of what was
going on, which was very frustrating for us.
Very soon after Andrew was born, he received a g-tube so that we could feed him since he could not
take a bottle at all in the beginning. Despite the g-tube, after we brought him home, he began to
have lots of feeding problems, throwing up almost everything that we gave him through his g-tube.
Eventually, he was admitted to the hospital to find out the cause. In the hospital for his feeding
problems, he suddenly stopped breathing and had to be intubated. Within a week he was trached and
we had to adjust to a whole new set of problems. We didn't take him home again for more than two
months.
Finally when we brought Andrew home, we also brought with us a roomful of equipment, cupboards
full of drugs and medical paraphernalia and home health nurses that, although were very nice,
pretty much eliminated any sense of privacy that we had. It was a very trying year.
Even though it was a tough year, at the end of it, Andrew was doing very well. He was able to be
decanulated, had his cleft palate repaired and had his g-tube removed. When Andrew sucked down
his first bottle by himself, we were thrilled! At that point, we decided to move back to Minnesota
so that we could be closer to our families and because of the excellent medical care Minnesota has.
Andrew has been hospitalized quite a few times since then, mostly with pneumonia. The last time he
was in the hospital, he left with a bipap machine and continues to use that at night during sleep.
Lately, he has been doing great. As I mentioned, a benefit of our decision to move back to
Minnesota was the exceptional medical care Andrew receives and we feel that Andrew has
continued to progress so well because of the care he is now receiving.
Andrew is in ninth grade this year and despite beginning speech delays, is mostly up to par with his
classmates. He continued to receive speech therapy at school and privately up until seventh grade.
He wears hearing aids bilaterally for his conductive hearing loss and used a sound system in class.
He has nebulizer treatments as needed and is currently on the drug Singulair, which seems to have
also helped keep him out of the hospital. He has severe scoliosis and was being watched for that
and eventually was admitted into the Titanium Rib program. The rods used are a type of growing
rod and allow him to continue growing while keeping his spine from worsening. He will probably
eventually require spinal fusion at the end of his growth. Andrew also sees a neurosurgeon as he
was diagnosed with Arnold Chiari malformation. He has a syrinx that has developed but after
insertion of a shunt, the syrinx has shrunk and is not causing any current concern. At this point,
without any immediate medical problems, Andrew seems to be a fairly happy fourteen year old!
[pmm 09/03/09]
Click here to learn about Andrew's ongoing Titanium Rib Surgery.
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