OPD Syndrome
Family Resource Network
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, we brought Andrew home, but 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 had to offer.

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 received and we feel that Andrew continued to progress so well because of the care he received.

In ninth grade, despite beginning speech delays, Andrew was 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 had 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.  We
thought he would eventually require spinal fusion at the end of his growth but seems to be stable.  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,

We moved to North Carolina in 2011 and the weather seems to agree with Andrew....and us!  Presently, Andrew
seems to be a fairly happy twenty one year old who has finished his Associates Degree.
[pmm 05/21/2016]

Click here to learn about Andrew's ongoing
Titanium Rib Surgery.
UPDATED: 5/21/2016
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