Tuesday, September 10, 2013

It Is Closed....

...sorta.  Milo had surgery to close the stoma (hole) from his g-tube.  Good news is that he is no longer leaky.  Bad news is that sutures and Milo do not get along well.  After the steri-strips came off he ended up with a suture abscess.  His belly looks icky and he's on antibiotic to clear up the infection.  When it heals I'm sure it won't be the nice incision line it should have been but oh well, at least he isn't leaky!  He has been eating more now that he has healed and everything stays in his stomach where it belongs.

Before surgery, the med are working                           Not wanting to wake up and very grumpy when he did

Along with his g-tube closure Milo had his teeth cleaned and x-rayed.  He did way better than I though he would at the dentist's office but no way they were going to be able to get his teeth really clean or his molars x-rayed.  The dentist was quite pleased with the health of his teeth, no cavities, and less plaque and tarter than expected from a g-tube fed kiddo with an oral aversion for years.  His front teeth (top and bottom) are a little wiggly and 2 weeks after his cleaning his bottom teeth popped though the gums...behind his baby teeth.  Ugh, I guess there is more dentist time in the near future.

At the same time he had both a direct bronchoscopy with his ENT doctor and a flexible bronchoscopy with his pulmonologist. The direct bronchoscopy looks at his trachea from the mouth to the lungs.  His ENT was very pleased with the size of his trachea, it is the size an adult male would require at sea level.  His scar tissue is not causing any more of a problem than normal.  She was so pleased we do not have to go back to see her for about 5 years, or when he has his adolescent growth spurt.  This is totally amazing for the kiddo that was being scoped every day as an infant.  His pulmonologist did the flexible bronchoscopy which is where they look deeper into the lungs with a smaller camera.  No big surprises but really no great improvement either.  He continues to have many areas of narrow passages and floppy passages.  Because of this he has an accumulation of mucus in his lungs.  She sucked out as much as they could and cultured it to make sure it wasn't growing anything funky.  Because of all the mucus his doctor recommended we use his airway clearance vest every day rather than just when he is sick.

He also had blood drawn while he was under anesthesia for several lab tests.  The first was a cortisol level to make sure his body was picking up the slack while we weaned him off the steroids he has been on for the last several years.  Good news...his lab value came back normal and he no longer is on oral steroids for his airways!  He also had allergy levels done.  I have the results but his appointment isn't for another 2 weeks.  Lets just say they weren't the results I was hoping for.

Yesterday was Milo's annual cardiology appointment.  He has an echocardiogram done and was amazing cooperative for that.  Laying still is not one of his strong points but he did pretty well.  The pressures in his heart are all normal (for the 2nd year in a row) so the stent in his pulmonary artery is working well.  The area in which his aortic coarctation was repaired looks great too.  He doesn't need to see her for another year!

That takes us to his eczema.  It's horrible most of the time.  He sees a dermatologist but all they seem to do is give him more and more and stronger steroids.  Toward the end of summer break I remembered the Atopic Dermatitis Day Program that is at National Jewish Health geared toward helping kids and their parents get the kids eczema under control.  I was told about the program about 4 years ago but kind of blew it off at the time.  Milo had been to National Jewish a couple of times and I can't say that I was very impressed either time so I wasn't sure this program would really work, and it's long... up to 2 weeks of all day, every day treatment.  That's a lot of school to miss for something I wasn't sure would be very beneficial.

A not so good eczema day, lots of redness and dryness                                             A rare good eczema day!                                                               

 I found a Facebook group of Eczema Parents that had nothing but good things to say about this program.  People were traveling from all over the country to participate.  I was intrigued.  I asked some questions and followed one family's journey while they were in Denver.  I decided that I needed to give it a try.  Within 10 days of my initial phone call we were able to schedule a date.  I chose to have Milo go during his fall break from school to minimize the number of days he would miss.  I'm guessing our scheduling went so quickly because Milo was already a National Jewish patient (even though he hadn't been for years), his allergist at Children's primarily works at National Jewish and they have electronic access to all his medical records from Children's Hospital. My understanding is that there will be lots of baths, wet wraps, lotions, allergy tests and challenges. We should come away with a better idea of what he is truly allergic to as well as clearer, less itchy skin for my little guy.  I'm sure it will be a lot of work but we should have a good plan in place by the time he is finished with the program.  I hope to be able to update this blog several days during the process.  I appreciate the knowledge I gained from other families and hope to be able to pass some information on to others as well.

Well, that's about it on the medical side of things.  Next up...a First Grade update!

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