Sunday, May 31, 2009

How Many Doctors?

How many doctors can Keegan see in a week? Well, there were 4 last week and one tomorrow, not counting cardiology from the week before. It was a lot of doctors (no offense to our lovely doctors, but come on, 5 in 6 days?) and a lot of co-pays, but no bad news. Now, that's something to celebrate. First, we saw our adorable pediatrician. She was so happy to see Keegan at her office, since we haven't been there since his 12-month "well-child" (gotta love an oxymoron like that with Keegan). He got caught up one vaccine and received boosters of two more. If you remember, Keegan did not respond to his vaccines originally, so we're giving him some booster shots to see if he'll respond this time. When we see his immunologist at the end of June, she will rerun labs to see if he has sufficient antibodies to the diseases vaccinated against. If he has not responded well enough, he will receive immunoglobulin infusions to boost his protection. We discussed Keegan's developments and milestones at length, and while he is doing very well considering all he's been through, we decided it's time to get him into physical/occupational and speech therapy in addition to feeding therapy. Once all the appointments and evaluations are in place, Keegan will probably have 3 to 4 therapy appointments per week. His feeding therapy evaluation is scheduled for Friday, and we're still working on the rest.

Keegan also saw his hematologist, who said she cannot reduce the amount of shots he gets per week yet. He's holding steady at levels that are really impressive for Keegan, and she thinks he's not ready to be "tested" on lower amounts. We've only been home for a month, so we don't want to rock the boat, even if it means giving him an injection almost every day. We're hoping the shot that helps keep his anemia in check may be weaned by the end of the year, but our hematologist believes Keegan will be on the GCSF (for his white blood cells) for the long-term. His gasteroenterologist also made no changes this week. Keegan really needs to start his feeding therapy and be eating more by mouth to reduce his daytime tube feeds. His doctor also would like to see him have less dirty diapers (more like 2-3 than 4-5 or more) before altering his medications.

Lastly, we saw the dermatologist on Friday afternoon. She said his rash did look suspiciously like graft-vs-host disease, but in that case, she would have expected to see it in his diaper area too. However, like his GI doc and hematologist had said earlier in the week, Keegan doesn't exactly "read the book" on these things. We decided to treat it with a super high-dose of topical steriod ointment first before doing a skin biopsy. She said that if we didn't see results in 7-10 days, we'll reconsider. I am super happy to report, that Keegan responded within 24 hours to the cream! His skin is as soft as a baby's for the first time ever (yes, I realize the contradiction here in that Keegan is a baby, but he has never had skin this smooth!). Albeit, he's still got a little more hair than a normal baby thanks to the trial run of that other immunosuppressant last fall, but that's slowly getting back to normal also.

Tomorrow, Keegan sees the dentist for the first time. He'll receive antibiotics prior to going in, but we're anticipating a very brief, simple visit with some simple cleaning and tooth-counting. I hope it goes well! Then, we're doctor free until labs on the 10th. We don't even have to see his cardiologist this month. How crazy is that?!

Please pray that his feeding therapy evaluation goes well. We had to chart his food for three days, and while the chart was chock-full in the "foods offered" columns, the "amount eaten" columns all said "none", except for his water. I swear the kid must be part fish because he'd live in the water if we let him. We are very anxious to get started on the right track with his feeding therapy. If Keegan can start to eat more during the day, we can reduce and hopefully one day stop his daytime tube feeds. Perhaps y'all should pray for Gray, the therapist, and me instead...trying to get a kid to eat at this age is challenging enough, but Keegan's issues make it that much more difficult.

Other than a million doctors' visits this week, Keegan is doing wonderfully. He's happy most of the time, and he's LOVING being around Rusty. Rusty's not quite so enthusiastic about Keegan, but he tolerates it well. Keegan did throw up in the middle of the night last night, the first time in awhile. We're also getting a lot of residual fluid out of his g-tube, which he doesn't usually have. Please pray with us that this is just a fluke, and that things will continue to go well here at home.

Thank you again for continuing to follow, support, and pray for Keegan. It is very difficult to not feel like you're waiting for the bottom to fall out every day. Yet, each day we're home with manageable issues is a blessing and one more chance to believe that we'll be home for awhile longer. I know your prayers have helped immensely towards that goal, and we cannot possibly thank you enough.