Thursday, April 12, 2012

Last of Houston pics and med updates

These pictures of a bit of the downtime when we were in Houston are some of my favorites in a while...they seem to sum up the simple joys of childhood. No matter what is happening, no matter what news we are given, no matter what tomorrow holds, these kids seem to always find ways to enjoy each and every day...and so shall we. 

We had about a day of rest when we got home from Houston (and after Easter) before we hit the ground running again with more dr appts for the kids. The first on the docket was Emma, funny enough, seeing one of her best friends' dads (and ENT here in town). Emma has been the unfortunate victim of "sister of a medically complicated brother" in that I have known for a good while now that she has more than likely needed her tonsils out. Once we started finding Abby sleeping on the couch every once in a while because Em was snoring so badly, I finally decided to bring it to everyone's attention. 
The kiddo was put on better allergy meds and referred to ENT for rather large tonsils. The funny part was that A) she was so excited to have something medical pertain to her and B) she was really, really hoping that she could do a sleep study. Hence works the mind of a child who has only known medical oddities most of her life.
Turns out that she fits most all the qualifications to take out her tonsils and adenoids without a sleep study, so she was a bit bummed. Hopefully this surgery, scheduled for this summer so she doesn't have to miss so much school, will help the poor kiddo stop sounding like Darth Vader when she sleeps. And I do have to mention that it is funny to have doctor visits with people that you know on a more casual basis beforehand. And by casual, I mean that Emma has had numerous playdates with his kids at his house...and even jumped into their pool fully clothed a few months ago...purposefully. He totally knows what he is getting into with this kiddo.
We had an appt with Nate's home pulmonologist the next day to review everything we did in Houston and all the new info. He did his second ever PFT and did outstanding with good results as well. I never would have imagined that he could perform a PFT at 4 years of age, and his pulmonologists here were pleasantly surprised as well. We are going to perform more extensive PFTs in the future (with mep, mip, and laying down) to hopefully see how much respiratory weakness we are dealing with here. The appt was a long, but really good one. We met with the fellow we have worked with for some time and love immensely, and we also saw an attending who we haven't seen in a little over 4 years. In fact, she was the very first pulmonary attending we saw the very first time Nate was hospitalized when he was 2 weeks old, and she remembered him so well. Turns out that he was quite the enigma then and this attending was so excited to see how well he is doing with the oxygen therapy now. It truly was an incredible visit with these doctors...a visit that encompassed quite a bit of medical talk with a lot of personal emotion talk of what is happening with our son and was exactly what I have needed lately.
We thought we rounded out the marathon of appointments as of lately with a visit with Nate's surgeon today. This was, by far, the appt that he was looking forward to over the past few days. He genuinely loves his much that I can't adequately explain his admiration for this doctor in words. Nate spent a good amount of the appt just draped over his lap while we is something that is so heart-warming to see as a mother. I can not help the fact that my child has to sit hour upon hour in these white-walled rooms, listening to his mother talk about his life and medical oddities with countless to witness him actually enjoying and looking forward to these interactions every once in a while is so touching in many aspects. 
This surgeon was happy with Nate's continued response to the GI stimulator but also said that due to his response to having the stimulator turned off for about 24 hours last week for the heart cath, we need to try really hard to not have to turn it off again. It took the little guy a good week to return to his baseline of eating and tube feeds, which I thought was pretty incredible (it used to take forever before the stimulator was placed). I am so pleased with the response our little guy has had to this has truly been life-altering for him.

He also told me that he is publishing the data on Nate and 4 other kiddos with neuromuscular disorders who have had positive responses to gastric electrical stimulation. I am so very excited about this!! And a second mito patient has responded quite well to the temporary stimulator and is having the permanent stimulator placed tomorrow. I am very excited with the fact that this information is being published as a positive therapy for kids with mito and other neuromuscular diseases!
I thought we were done with dr appts for a couple of months after this morning's appt, but Abby told me on the way home from school that she didn't feel good...and upon returning home, we realized she had a fever. When she complained of lung pain later, I checked her sats and saw that she was sitting at 94-96 and then listened to her chest and heard the distinct crackles that signaled the need to get her into our pediatrician's office. A bit later, we left with another pneumonia diagnosis and a script for an antibiotic. Who knows why the kiddo has pneumonia again?!? It really is quite strange. She has had a cough since I have been back from Houston, but she has seemed fine until today. For goodness sakes, she had the best soccer game she has had all season 3 days ago and ran a half-mile at morning mile yesterday. The appts never seem to end with 3 kiddos.

But it has truly been amazing to be reminded of God's bountiful blessings amidst everything. The friendships and relationships we have formed over the past 4 years in this medical world are such incredible blessings from our Lord. We have numerous nurses who treat Nate like their own him gifts, loving on him, and taking care of him when I need to talk to doctors. Each and every one of these people we encounter hold such a special place in our heart, and I am so very thankful that we have had the privilege to know and love each one of them. Like I told our pulmonologist yesterday, I truly wish life was different for Nate, but I wouldn't trade what we have learned and who we have met through this journey for anything. It is such a strange emotion.


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