The Good Doctor

Carter had an appointment with his Pulmonologist today to discuss the results of his sleep study.  After I left, I started to think about how much I really appreciate her and everything she does for Carter.  It's a long drive home, so I had a lot of time to process what had happened and how I felt about it. 

It seems like ages ago that we were sitting in the hospital room with a doctor who looked like he couldn't be more than twelve years old.  This doc was pretty much telling us that Carter needed a Tracheostomy, and he needed it now.  Many of the reasons he gave were valid, but we just couldn't bring ourselves to take that step quite yet.  I'm not even sure that this particular doctor ever even used Carter's name.  It seemed as though he was more intrigued by Carter's genetics than by Carter himself.  It was at that point that we made a turning point in our parenting style for Carter.  Up until then we had taken everything that the docs had told us almost as the word of God.  It didn't matter that we didn't really think that he needed a heart cath....we agreed to it because the doc told us it was the right thing to do. After nine days in the hospital (because of the heart cath) we knew that we absolutely had to stand up for what Carter needed.  We had enough of the hospital treating our son like a guinea pig because of his genetics.

That wasn't the only time that Carter was treated that way.  After his cleft lip/palate surgery, we had a resident who was going over Carter's history with us.  Granted, Carter's medical files can be quite overwhelming especially when it's the first time you get his case, but he was only supposed to spend one night in this unit before being discharged. As this resident checked him over, I did not get a warm fuzzy feeling AT.ALL.  She kept drilling me about all of his medical problems and asked me over and over what was being done for each and every.little.thing.  After her exam (when I started getting a bit nasty with her), she told us what her "plan" for Carter was.  She acted like she was taking on the role as his new Pediatrician and wanted to change his feedings and such. Instead of one more night in the hospital, she was acting like he was going to be there for a few more weeks while she put her "plan" into action. Then she proceeded to tell us "obviously I can't fix everything that is wrong with him on this visit, but I'll do what I can".  What?!  Carter had been doing wonderfully and just needed to finish recovery from his surgery.  We weren't there for anything else. This experience just made us even more protective of him.  The point I'm making is that I can't stand it when some of these doctors act like Carter is just a giant folder of medical history.  He is a person too.  Yes, his genetics are a little different, but he is a person and deserves to be treated as one.

I know that this is probably not making any sense, but it is something that I thought about as I took my long drive home today.  We had such a good visit with the Pulmonologist and I realized that part of the reason was that this doctor treats him like a person.  She continually played with him during the entire conversation.  She kept telling him how cute he was and how proud of him she was. She couldn't wait to see who he would grow into and couldn't believe how far he had come.  After reading his sleep study, the doc decided that Carter just needs a little more Oxygen while he sleeps.  We're upping him to 1 liter at night, and she told me that we could take him off of the O2 during the day as long as his saturation stays in the 90's.  For the most part he can do room air while awake, so we just need to get him used to it a little more.  The doc did tell me that she thought that some other docs might not care for her decision to not try him on CPAP, but she was looking out for Carter and truly thought this is what is best for him.  She told us to come back in ONE YEAR (wow!) for another sleep study UNLESS anything came up that we needed her for.  She told me that she is always there for Carter. Oh, and she also said that she expected that his next sleep study will have improved significantly over this one.  Only time will tell.

Sleep Study

Our busy week has finally ended...wahoo!!  The house is eerily quiet since the two older kids went to "Boo at the Zoo" with the grandparents, and Carter is napping.  The sleep study went well.  It felt a little weird sleeping in a room where the intercom was constantly on and the camera as well.  Carter slept through the night and seemed to sleep pretty comfortably.  We won't find out the results until November 5th.  His hearing aid has also been ordered, so now all we do is wait for November 3rd to come.  I'm so excited for it that it seems like that day is forever away.  We don't have much planned for this week.  Mostly just Halloween parties for the two older kids.  I'll post pics of their costumes soon. Also, Carter will start physical therapy on Monday.

Hearing Aid

We've had a couple of busy days .  Yesterday, Carter had a repeat of his hearing test.  We found out that he has no hearing in the right side (which is no surprise), and still a moderate hearing loss on the left.  We did find out that the BAHA hearing aid actually would work very well for him. We decided to not go with the actual BAHA, but a similar product that is literally about 5 times cheaper but works just as well. It's called a bone conduction hearing aid.  The problem with the traditional hearing aid is that it didn't seem to fit in his tiny ear very well.  This bone conduction hearing aid is a little device that will sit behind his left ear.  It is connected to a small microphone that will pick up the sound which will vibrate the little device and make Carter hear.  Obviously this is the very basic explanation of it because quite honestly I don't really get how it works.  The really cool thing about it is that it will give him normal hearing in the left ear and a mild hearing loss in the right even though he'll only wear it on one side.  Again, I really don't get how it works but it does so that's all that matters. The only negative (and honestly... it doesn't matter), is that he'll have to wear a headband to keep it on.  Here's a link that shows an example: Head Band .  Hopefully Carter will look a little happier with it on then that model.  So...to all of you sewing/crafting friends out there, you need to help me come up with some cute ideas for the little guy.  The band that he's getting is denim which could be cute except that it has white stripes on it too. That's just a little too much for me. We're already thinking that some hats would work.  Now, he won't have to wear the headband forever.  Just until he's five when he'll get a BAHA surgically implanted.  That's probably about the time that he'll get his prosthetic ear as well. Did I mention that he's getting his hearing aid on November 3rd?!  Yeah!!

We also had a visit with Opthalmology today.  It was just to check his right eye to be sure that it wasn't being compromised from being open all of the time.  The doc said that it looked wonderful.  He also said that he thinks it's a great idea to have the eyelid weight put in during his next surgery.  Hooray for that too!

I'm so happy to say that today was our last appointment at the children's hospital until January.  Keep your fingers crossed that we can keep Carter healthy through the Winter. We do have a sleep study tomorrow, but that's at the doc's office.  He has his follow-up for that on November 5th when we'll find out what the plan is for Carter's O2 needs. Then we are done until January...unless the doc wants another follow up after that. 

Carter's been such a stud lately.  He's smiling at EVERYTHING.  He's so aware of his surroundings and munching on his hands.  I love watching him grow.  It's exciting to think about what it will be like after he gets his hearing aid.  Here's a few pics that show off his little smile.  This kid cracks me up!