That was yesterday...vent clinic again and it went great! We first went over to Medical City to visit the ENT--you may remember that Dakin has been having some problems with random desatting (for the happily uninitiated, that means the oxygen levels in his blood are going down) just as he falling asleep, but none during the day, so Dr. G (pulmonologist) wanted us to visit him to see what he thought.
Then we headed over to Genghis Grill for Dada's birthday lunch. We were first in the restaurant, so we had plenty of room for Dakin and his chair. He even had a few bites of noodle!
On to vent clinic and all the usual--x-ray, leech lady coming to take blood, visit with the amazing outpatient case manager and nutritionist. This time was special, though, because we had a visit from Dr. R, who is a physical therapy doctor. We have been wanting to discuss a bowel regimen so we could get on the path to potty training this boy...she is going to work on it for us to see how we should get started.
Dakin didn't gain as much as he should have the last three months, which was kind of a shock to me as he seems to be eating so much more now. In talking it over with the nutritionist, we don't think it's so much that he's not eating enough, but more that he's moving more now, so we need to really work on upping his intake, which is hard with a kid who just. won't. eat. sometimes, but we'll get there.
Ok, now for the exciting stuff: pulmonologist and entourage enter. Dr. G thinks the desatting is due to the HUMONGOUS leak Dakin has around his trach (the reason he can talk), and has ordered an upsize trach for him-Dr. G thinks we have enough room in Dakin's stoma to get it in on our own at home (YAY!!!!!!! I was so worried he would have to do surgery to enlarge his stoma!!!).
So the upsize should solve the desatting problem. We also get to drop Dakin's atrovent (one of his breathing meds) and go to twice daily treatments instead of three daily! And instead of just popping him on the oxygen when he gets to 91% O2 saturation, we can wait until 88 and see if he can pull himself up.
He also said Dakin looks great and that we do a phenomenal job with him (that's the sunshine and rainbows--my job is justified every day by the smile on my boy's face, but to hear a doc tell you you're doing a good job is icing on the cake).
Soooo...sorry about the long post with the technical jargon. It was just a good day!
4 comments:
Yay!! I love reading about these kids doing well. I hope that you'll be able to breathe a few sighs of relief.
Keep making your mommy proud Dakin.
Oh love hearing all the good news. Always wonderful to have appts like those.
I had an appointment once where my doctor told me I was doing a great job with my kids and it brought me to tears. I understand. But from here, it really is obvious that you are. Hope all the technical stuff works out and that you can avoid the surgery.
You guys ARE doing a great job with Dakin!! And you handle his medical condition and everything that goes with it with such grace. You are an amazing woman and parent :)
Love you all!!
xoxox~
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