Wednesday, October 2, 2013

Medical Update 2013

The last 5 weeks have been overly filled with doctor appointments!  All in all Milo is doing well.

Milo had his yearly echo the beginning of September.  Laying still is not one of the Milo excels at, but he did pretty good for the echo this time.  All his heart pressures look good, the blood flow across his pulmonary artery stent looks good, and he doesn't have any other issues, so we don't have to see her again until Fall 2014.

The g-tube is history and the hole has been closed!  Unfortunately Milo spent all summer with a leaky hole in his belly.  The very end of August he had surgery to close the hole.  His skin seemed to reject the sutures and he had a little infection so he ended up on antibiotics with an ugly & swollen looking scar.  Good news is that the scar is looking better and has just a tiny scab now and the swelling is much less.  For the first time in over 6 years there is nothing leaking out of his stomach onto his shirt :0)

Milo had his first dentist appointment.  He cooperated better than I though he would but it was clear he couldn't tolerate a proper cleaning.  While his g-tube hole was being closed he had his teeth cleaned and x-rayed while under anesthesia.  The dentist was surprised at how well his teeth were doing, no cavities!  His top and bottom front teeth are a little loose.  Less than a week later his bottom front permanent teeth pop through behind his baby teeth.  Guess we'll be seeing the dentist again since his baby teeth really aren't any where close to falling out by themselves.

We got to see Dr. Deterding the first part of September as well.  His lung sound good, his steroids were reduced and she wants him to get a flu shot.  There is a strain of flu in China (just a matter of time before it's here) that is resistant to all the anti-viral medications so that is a concern and a good reason to get the flu shot this year.  At the same time as his g-tube surgery, she did a bronchoscopy that looks deeper into the lungs.  He still has narrow and floppy areas all throughout his lungs.  This traps normal secretions so infection is a concern.  They did suck out all the goo they could and cultured some.  Luckily nothing of significance grew.  She did recommend he use his airway clearance vest at least once per day, every day and twice per day if he is sick.  We had just been using it if he was sick.  He also continues to get Pulmicort once per day.  They did a cortisol blood test to make sure his adrenal glands were working after being on Prednisilone for so long.  Good news is that his body is doing it's job and he is no longer on any oral steroids!

Dr. Kelley also jumped in on surgery day and did a direct laryngoscopy & bronchoscopy.  She was pleased with how well his trachea has grown.  His airway is the size that will sustain an adult male at sea level!   Of course at our altitude it needs to be bigger but there is no reason why it shouldn't continue to grow. If all else fails I guess he lives at sea level as an adult.  His scar tissue has remained stable.  She is pleased with his progress and said she doesn't need to see him again for about 5 years!

Milo's eczema has continued to be an issue.  The dermatologist just keep handing out more and stronger steroid ointment.  We are going to National Jewish Health the end of October to participate in a two week day program aimed at healing his eczema and helping to keep it that way.

Last week Milo saw two different allergists.  The first was his regular allergist where we got results from blood tests that were done while he was having surgery.  The numbers came back extremely elevated.  His IgE was over 19,000 while normal is under 50.  All the individual rast tests came back elevated as well.  The most likely reason for this is his eczema.  When eczema is bad IgE is elevated. He refered us to another allergist who is one of the top food allergy doctors in the nation.  Dr B. just happened to be having a clinic at Children's last week and were able to get into to see him.  He wasn't all that concerned about the high IgE but definitely want's Milo to be in the day program at National Jewish Health.  His allergies will be addressed along with the eczema.  Blood test will be re-done, skin test will be preformed and hopefully some food challenges as well.  I am looking forward to figuring out this piece of the puzzle.

Milo has his annual well-child check-up this last week as well.  Everything checks out well and much to his relief Milo didn't need any immunizations.  The flu shot is available quite yet.  The only disappointing thing is that his primary care provider, who is a nurse practitioner, is retiring the end of October.  We will miss seeing Glenda, she has been very good to Milo over the years.  Now we have to choose another doctor to be his primary care provider.

I'm definitely done with doctor's offices for a little while and am glad to have a three week break before the day program for Milo's eczema starts!

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