Thursday, October 31, 2013

Happy Halloween!!

Milo is perfecting his robot moves!
Hope you have a fun and safe day :0)

Tuesday, October 15, 2013

Eczema Top 15

15 Reasons Why I Despise Eczema:
In no particular order
1.  My kid is miserable
2.  The constant itch
3.  Sleepless nights; some night he wakes up itching and is sleep deprived
4.  Constant supervision so he doesn't scratch until he bleeds
5.  The rude looks and comments
6.  Less than helpful advice from others, some well intentioned, some not so much
7.  Wet pajamas at bed time (also know at wet wrapping)
8.  Prescription ointments
9.  Ruined clothes (his and mine) and bedding from oily ointment stains
10.  Bloody sheets from night time scratching
11.  Chasing "miracle" ointments, lotions, vitamins and supplements, diets, etc.
12.  Costco size bottles of Benedryl & Tylenol
13.  Countless trips to the school nurse for more lotion
14.  Long sleeves and long pants year round
15.  Bath water stings his eczema skin

Thursday, October 3, 2013

Awareness Month

October is eczema awareness month.  It is also breast cancer month, Downs Syndrome month, microcephaly month, sensory processing month, dwarfism awareness month and probably many more.

While all of those are noble causes, our battle lies with eczema.  There are thousands of kids who suffer with it.  Some worse than others.  Some can be controlled with over the counter medications, some get infected and require hospitalization and/or antibiotics, some look like sunburns, some look like patches of raised and excoriated skin. 

Six and a half years ago if you would have told me that in 2013 Milo would be trach, vent, g-tube free and thriving in his main stream 1st grade classroom, but would have eczema, I would have been ecstatic!  Now don't get me wrong, I am very grateful of how far he has come but there are days and weeks I would trade the eczema for having his trach.  I know there are people gasping at the thought but let me explain.  Eczema affect him every minute of every day.  He is itchy and rashy.  It makes him irritable and difficult to sleep.  People are starting to look at him and shy away because they don't want to catch whatever it is that he has.  The palms of his hurt and the bottom of his feet can have open sores which make it painful to walk.  Honestly Milo's trach was less noticeable than his eczema, he rarely required suctioning, he could wear a cap or a Passe-Muir Valve that would allow him to talk.  The trach did limit his ability to play in water and sand but that is about it.

In a few weeks we will be embarking on a new journey with National Jewish Health to help control Milo's eczema.  The hope is that we can get his skin clear, learn how to keep it that way, and quickly control flair-ups that will inevitably happen.  This day program is every day Monday-Friday for two weeks.  The first night will be spent in the hospital and from then on we will be able to come home for the evenings and return first thing in the morning.  Missing 10 days of school was a big consideration but I was able to schedule the time over his Fall Break so should only miss about 3 days of school.  I have had mixed feelings about participating in the program and how effective it will be.  At this point, we have nothing to loose and everything to gain.

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!