Sunday, April 17, 2011

Someone told Ethan we have plans.....


Ethan riding the big rig to the Mercy!

It's been a long time since we've had to keep our upcoming plans a secret from Ethan, but we seem to have fallen back into our old familiar ways of needing to do just that.   It started quite a few years ago....

we have plans to get family pictures taken?  Ethan gets sick and gets admitted.

we have plans to go to the Weston Irish Fest?  Ethan gets sick and gets admitted.

we have family in town for the holidays?  Ethan gets sick and gets admitted.

we set the date for Ethan's birthday party?  Ethan gets sick and gets admitted.

Seeing the pattern here??? We used to joke around that we couldn't share our plans with Ethan, or discuss them out loud around him-or we would inevitably be jinxed.
Well, leave it to the boy who loves his routine and adapts terribly to change-I have plans to run, and I mean RUN the Trolley Run for the first time ever tomorrow morning (I've walked it pushing baldy in the stroller for years)AND guess who's sick and in the hospital? 
My FAB 40th B-day party is next Friday, and we have some of my favorite relatives coming in town to celebrate with us, and guess who's sick and in the hospital?

Yep, you guessed it-Ethan. 

I know what jinxed us-we were in clinic on Tuesday doing the boy's intake interview for the Medical Coordination Clinic-and he was a PEACH!  I mean charming as heck!  Smiling, laughing, showing off for the new staff, following commands when we would ask to see his 'piggies' or tell him if he wanted out of his wheelchair he needed to raise his arms.  And he was ON!  We bragged about everything Ethan-height, weight, feeds, pooping, peeing -you know, all the important stuff.  I *gasp* even mentioned that I would like to see about getting back into the amazing Jodi Gamis -OT Feeding Specialist Extraordinaire-to work on some oral stuff that would maybe eventually lead us into some oral intake again someday.
 That was Tuesday morning. 

Wednesday was good. 

Thursday bad. 

Friday TERRIBLE.  He came home from school on Thursday with a note that said he took a nap that morning and another one in the afternoon which he had to be woken from to participate in music.   That should have been our first sign...which we ignored.  First mistake. 
The second one was when Brian put him to bed at 7:30pm that night and he was still asleep when I got home Friday morning at 7:30am and we didn't take him in then.
Needless to say, I was not surprised when Brian woke me at 12:30 and said we've got to go NOW.

Rolling into Children's Urgent Care North with a kid like Ethan usually gets you taken right back.  Rolling in there with a kid like Ethan whose sats are in the 70's gets you downtown in an ambulance pretty darn quick! 

So, here we've been since Friday afternoon.  On 3-5 liters of oxygen at any given time, lethargic and crabby. 
Negative for Flu, RSV and Pneumonia-just some 'peri-hilar thickening and haziness' on his Chest x-ray.  Pretty normal for the bald kid.  Sats in the 70's-not so normal-even with 'hazy' looking lungs. 
He was initially admitted under Dr. Kaine-Ethan's Cardiologist for fear he was in congestive heart failure.  BUT-upon admission Dr Kaine came in and took a good look at E, and felt that CHF is not the case right now(Thank goodness) and transferred him to the General Peds team with the agreement that if anything changed over the weekend, Cardio would happily take him back.  We are ok with the transfer-though we love Cardio-I like the Gen Peds team too, and his issues right now are not cardiac related.  What are they related to?  My best guess?  The fact that he has been taken off his Immunoglobulin infusions since January due to an adverse reaction to the concentration of the brand we had to switch him to per our insurance. 
For those of you remember fall of 2007 and most of 2008-Ethan had 10 admissions in 9 months, was a DNR at one point and we thought we would never be bringing him home, let alone celebrating another birthday with him!  We visited Dr Portnoy in Allergy/Immunology and he found the cause....Ethan has CVID or Common Variable Immune Deficiency.  So almost two years later of us doing home subcutaneous infusions weekly of immunoglobulin-we went from all those admissions in 9 months to 2 in two years!  So, do I think that was the fix?  YES-especially since we had to stop the infusions in January and we've had more sick days than normal since then.
Why did we have to stop it you ask?  He started out on Vivaglobin-a concentration of 16%, which he did fabulously with for a year and a half.  They stopped making the Vivaglobin-so insurance switched him to Hizentra-a concentration of 20%.  Less volume, less time involved, but lots more reactions.  Site reactions lasting two days, flushing face antihistamine reaction lasting 24-36 hours, and overall just plain crabbiness lasting from start of infusion until about one day before we were due to give his next one.  All those combined made for a cranky kid and unhappy parents.  Per Allergy-STOP immediately before the reactions get any worse, and wait til you hear from us about starting him on a new one-once the insurance company agrees to that -and to pay the $5000 a month it costs.  And when did we get the phone call that all of this had been approved and he is due to get his first infusion of Gamunex C in the next two weeks???  Monday-yep, 4 days before admission!  Oh well, that's how our boy rolls.
Over the two years on the infusions, he built up a nice immune system, but having been off for a few months now-our luck ran out, and so did his immunity to itty bitty viruses like rhinovirus (the common cold)  and his body's ability to fight them off without needing to be hospitalized. 
The Gen Peds team has contacted Immunology and they recommended checking his IgG, IgA, and IgE levels while he is here, and if low do an emergent IV infusion of IG if needed to boost him up.  Easier said than done if we could actually get a good IV on the bald kid.  Only 4 sticks this time to finally get one in his foot made Ethan a very unhappy boy!   I don't think it will last to do an infusion through tomorrow if needed, but we will hope and pray. 
The Gen Peds team also contacted Endocrine about E's adrenal insufficiency, and the possible need to do some stress dosing of hydrocortisone.  YES was the answer-right away, right now and a higher dose than what we normally do at home during illnesses.  ALSO-they recommend a re-test of his adrenal function to make sure it's not any worse than before and that we don't need to be medicating him all the time instead of just in times of stress-illness, prior to surgery, etc.  Those results will be back in the morning, and the plan may change then.  All of the symptoms Ethan had which brought us in this time coorelate with Addison's Syndrome, and adrenal crisis.  I never put them together, because he has been so well in the last two years.  But when he was initially diagnosed with adrenal insufficiency, we were warned about a possible lethargic state, accompanied by low blood pressure and GI issues which could put him in a coma-like state and possibly death to which we would have to give him a shot of dexamethasone and call 911 immediately.  Fortunately this time wasn't like that -but well could have been had we let him linger on with this illness any longer before taking him in.  Honestly-we are pretty on top of the little guy and he crashed hard and fast this time-I had no idea I would see sats of 70 when they hooked him up at UC.  So I've learned my lesson this time, and I will be the crazy, over-bearing Mom now for a while again, until I feel like I can breathe a little easier.

Sorry so long, lots going on with the little guy-will update as soon as we know more.

Good Luck Hailey!
Hailey's last volleyball tournament of the year is tomorrow-so GOOD LUCK CLUB NORTH 14-5's!  Play hard and play  to win-but most of all, enjoy the fabulous club season you all had!  I am so proud of Hailey's success and drive to get over her injury and back on the court!  Love you Hay Jay!!

love, hugs, and prayers,
K


1 comment:

  1. Scary stuff!! Hope the docs get it figured out and hes on the mend soon!! Too many Ch18 kids in the hospital lately. I can hardly keep up with my prayers!

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