National Jewish health / Denver - Day 3

Day 3 is Friday and we landed in Denver on Tuesday. Apparently, this is just enough time for us to be getting homesick and overwhelmed with the long hospital stay, because we both woke up feeling edgy and blue.

 I did 'Lou's wraps by myself last night and he slept in them all night. He still woke up with a slightly rashy face and cracked eyelids. It turns out that the residence inn we are staying at (on Zuni street) is a pet friendly- only hotel. They have no rooms that have been pet free, a fact I discovered just before flying out of Detroit and which they tried to remedy by cleaning the carpets 6 hours before we arrived.

Needless to say, the damp carpet flared 'Lou's feet and ankles up and the pet residue made his nose stuffy. We went in to NJH early again today to do a load of laundry so he'd have enough socks and footie jammies for the day's soak and seals (they said to bring 6 pairs of tube socks- trust me, you need like 12) and to eat breakfast there before starting our daily schedule.

 The 1st business of the day was that NJH set up an appointment for 'Lou with a urologist from Denver children's hospital for Monday. They also provided me with a large packet of info on the genetic disorder they are testing him for: filaggrin deficiency. Next came a blood draw for 'Lou to test for the genetic disorder and some other things. Seeing as how we'd already started the day off on the wrong foot, he obligingly kept it consistent and screamed and yelled his fool head off for the entire blood draw.

 We also got the results back on his yeast test-scrapings - negative. After breakfast, we did his first soak and seal of the day and he was thrilled to hear that he no longer needs his head or face wrapped.

 Then down to the real business of the day: the highly accurate form of skin testing that NJH is known for - the "puddle test". This is where they take the potential allergen and soak it in an ampule of water over 24 hours before the test, then mix it well and use that to scratch onto the patient's skin. No preservatives, no additives, no alcohol.

 We did the puddle test for corn and 'Lou had no reaction.

 The next step is the gold standard in ruling out an allergy: the food challenge. During my stay here so far, I have seen that many children are fearful or reluctant to even taste the food they've been told for so long can make them very sick. They have to be bribed, coaxed, encouraged or threatened to do it- and some still won't and more creative efforts must be employed. Not so my son. He saw those sun-colored niblets of joy and the nurse nearly lost a limb.

 He passed three corn food challenges today with nothing more than transient redness and bumps across his face and arms. I had to keep telling myself, "this is not a true allergic reaction- this is his very thin and damaged skin being sensitive to something. This is not going to be the beginning of a big flare like I've consistently seen from corn in the past, because we've got his skin in the best shape its been in, in his life. His skin can prevent him from having a true IgE response when it is healthy and if this does turn into a persistent issue that messes up his skin, I know how to clear it up now!"

 It was very liberating and empowering. Let's hope it keeps working this well when we get home! By the time we got done with the food challenges and waiting for 2 hours after to be safe, it was well past 3 and the puddle tests for our dogs, shea butter and soap nuts were ready.

All four were completely negative for any significant reaction from 'Lou! This is a huge relief because even though I have never seen 'Lou have a reaction from our two Great Danes or the shea butter or soap nuts,we rehomed one of the dogs and often wonder if we need to remove the second one.

Some of 'Lou's Dr.s are also skeptical about the unknown entity that raw shea butter and soap nuts represent and now we can all rest assured that these items aren't adversely affecting him.

 In addition to the above, we did puddle tests to beans, peanuts, almonds, lentils, chickpeas, soy milk, milk and egg. Milk and egg caused a considerable reaction; soy milk, chickpeas and some legumes and beans caused milder ones. Even his weals are atypical and flattened, another indicator of filaggrin deficiency, according to staff here.

 I'm waiting for the food challenges as the real indicator of what we can feed him. Egg and milk probably won't be challenged as they give every indication of being "true" allergies as they cause hives upon contact and have test scores high enough to indicate potential anaphylaxis.

 The last task for our day was learning how to irrigate 'Lou's sinuses, something which I already did my own version of, but this is much more thorough and causes the flow of water to go in one nostril and out the other.

 When I first registered for NJH, I was told we'd be at the hospital from 8am to 3pm on weekdays and that evenings and weekends would be ours. The truth is, we are really devoting about 6am to 6pm every day to getting and being there. We go in early a lot to do laundry we will need for the wraps, eat breakfast before all the tests and meetings and just to lug all our stuff from hotel to our hospital room.

 Even though it's only been 3 days, It is really starting to feel like home base. The staff fold and return our laundry if I am with a Dr. when it's ready. They've made special arrangements as a breastfeeding mother to provide all my meals while in the hospital, along with 'Lou's. They've told me to come in over the weekend as often as I like - for meals if we need safe food to eat, to do 'Lou's soak and seal there if I don't like doing it in the hotel.

 Tonight he had worsening symptoms of the complications from eczema to his foreskin and I rushed him in there at 10pm to have it looked at and the Dr. invited us to just spend the night, saying it might make me feel better to have him in the hospital just in case.

 Today I learned that a building next to the hospital is actually a school with about 80 students that the hospital funds and provides medical care to, who have substandard insurance or finances to get the allergy care they need otherwise. Now they can go to school safely, with their health and medication needs met. I was also very surprised to learn that NJH has a peanut desensitization program! I had not realized that any major hospitals were doing that, let alone a giant in the allergy world like NJH!

 Tomorrow we might go to the zoo. It's free for NJH patients. It's going to be strange having time that isn't scheduled with every minute accounted for. If we sit still, we are going to get avalanched by homesickness.

Some of my best tips that are saving our lives on this trip are:
 Bring adjustable water sandals - they are the only thing that will fit over the foot wraps. Bring an iPad or other entertaining electronic gadget- perfect for skin scratch tests. Buy extra underwear for your child - theirs will quickly have the elastic ruined by all the ointments and creams. Bring a rolling overnight case for both you and your child to take between hotel and hospital. Yours for medical records and whatnot, theirs for all the tube socks, footie jammies, sweats, creams, lotions and toys the hospital will give them. Don't bring clothes for yourself that you care about- they will get greasy, oily imprints all over them. Do bring something to put your hair up with if it is long. You will get greasy, oily ointments and creams in it. If you come in spring/summer, use the rooftop play area for when your child is getting cold in the wet wraps. The heat it retains there is marvelous.


Anonymous said...

Hi there! We are leaving next week to do the day program. I am terrified, stressed and equally exhausted. My son is only 20 months . Was the program a big success as you had hoped?? Also were the tube socks adult sizes??? I have yet to find any that would fit my little boy. Thanks

jack said...

hello! yes, the program was better than i dared to hope for. i was so scared they were just going to push more medications and procedures on my little guy that would have side effects and rebound effects.

instead they taught us how to proactively keep his skin optimally hyper-hydrated and sealed as well as how to prevent any further infections. all of which led to more accurate food allergy testing. which in turn led to expanding his diet enormously.

it has been 1 1/2 yrs since we were there and i still follow the things they taught me to a 't'. i also still call them regularly for guidance and advice. it was worth everything my family had to go through to take that trip for sure. he has been like a completely new child since we learned and implemented what they taught us. he has never gone back to the condition he was in when we arrived there - and we know how to make sure he never does, thanks to NJH.

as to the socks, we never found tube socks, either. we ended up getting crew socks for adults or teens, they worked fine. i think we found them at target near NJH, as well while we were there. tell sandy 'hi' from us if you meet her - she's the best!

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