Elecare Jr.

We are coming off of two appointments this week. So lots going on. Gavin will start on Elevate Jr. As soon as we get clearance from insurance, which should be soon. GI wants him to try to drink orally the needed calories a day before we jump to a tube. Then she only wants to do a NG tube. I’m not a fan of the NG, especially since he’ll be strictly elemental for 3-4 months.
Gavin seems more comfortable with the g-tube as well so IF we end up needing one, we’ll be pushing for that.
He had blood work yesterday, but they blew his vein, so we have to go back for that. Just a CBC and a Liver Panel.

This hurry up and wait is killing me, so ready for this to be done with so we can stop living in doctors offices weekly!

Biopsies and tubie friends

Scope results came Monday afternoon. 95 to well over 100. Our GI called in an eosinophilic specialist to meet us at our next appointment September 3rd. ThT appointment we will plan tube placement and start working with a DME company to make sure we are all set for when we bring him home. I thought about getting a Tubie friend, but then heard if you have a spare button(we’ll be getting a mic-key) then will sew it in at build a bear. I think the whole experience of making his Tunis buddy will be even more therapeutic for him.

We had open house today at school, and I let them know what has been going on with him and what is coming. We’ll be sitting down with the head of school sometime after our sept. 3rd appointment and followup allergist appointment to help get them further up to speed.

Here’s to hoping transition back into school life goes smoothly.

Scope at unc

Our appointment was Wednesday, August 14th at 8:30am. Because we severely underestimated traffic at that time in the city, we actually arrived at UNC at 9:30am. We phoned ahead to let them know we were coming, just delayed.
When we got there things moved quickly. Gavin didn’t have much time for any rest.
The big standouts between our last scope ( at a different hospital) and this one, made the 130mile drive worth it.
No versed this time! I walked him to the OR and held him while he fell asleep breathing gas. No intubation either! He was out and in PACU in under 20 minutes. I was with him as he woke up and he got to eat as soon as he felt ready.

Dr. Litchman came over and discussed what he saw, deeper furrows, esophagus completely white (opposed to patchy)

Today is now Monday, I expect a call soon with biopsy results. And a date to come back and get things rolling towards a tube.

I am glad that things seem to be moving quickly, Gavin starts school next week for three days, then all the kids resume on Sept. 9th. The 3-6 year olds do staggered start so as not to overwhelm them. Maybe by the 9th we’ll have all of this over with, so we can limit his days out so early in the school year.

Which brings me to my next order of business, IEP writing, planning, and meeting with his school to discuss what a gtube means.

We decided not to do feeds at school and do the gtube so as to not make it completely noticeable to the other kids.
Okay that’s my mini update. Here are some pictures of our trip and if you are on instagram and want more real time info. Please follow me @ allergysupermom

4 minutes left until NPO, he took advantage.

Getting ready to go back.

In the PACU just waking up.

                       Willow kisses

reward for doing an awesome job. Diet is opened up to only restrict foods that produce immediate reactions.

UNC

Game plan: schedule new scope, depending on those results then schedule a tube.

Yep. We’re going elemental.
We spoke with the new team for two hours. I really enjoyed how much they listened to not only me, but to Gavin.

My homework now is to get clearance from our insurance company to cover the cost of formula, to also sit down with our pharmacist to map out costs and to schedule a meeting with a dietician to work on calorie intake requirements.

Beyond the medical side of things, I have to set up an IEP planning meeting as soon as teachers/staff get in so we can prepare the school for what is coming.

I am wiped out. Our appointment today was at 3:00, and we didn’t get home until 9:00pm. Triangle traffic at 5:00(when we got out of there) was just insane. But I did beat my fear of the 440 today!!!! Once we got out of there, we stopped in Knightdale for something to eat.

I’m happy to have a plan in place, i walked into UNC knowing what we were facing… but the reality is hitting. 2:30am and I can’t turn my brain off. Hopefully sleep won’t allude me and I can start the day tomorrow fresh to start talks with insurance. 

Some days you just have to be thankful for the small things

Like Gatorade! There are only two or three flavors he does well with, but (and excuse my inner girlie girl)
Oh. Em. Gee!

How awesome it is for him to have variety in his drink choices.

On a dietary update: we have stepped back our restrictions just for a little while. Gavin is top 8 free, no meats, corn, citrus, rice, and a couple other little things as we navigate. If UNC is considering elemental, we’re going to enjoy some our lesser reactive foods right now. This way I don’t have to figure out supplementation AND a super dee duper strict diet. Just not yet. Let him have some reprieve. He turns six on Thursday and we’re so happy to celebrate it.

Good bye, July!

In a week I will have a six year old. In two weeks we will have had our first visit with our new care team at UNC and be on a much better road. And in one month I will be lulling a six year old to sleep in preparation for his first day back at school.
How amazing how fast time goes on. Six years ago I was waiting for this little bundle to choose when he wanted to be born. I was blissfully unaware of things like: eosinophil, food allergies, cross contamination… I was unprepared for motherhood in every way a first time mom could be. In a week I will have been a mother now, three times over. I still feel helpless at times, but I am not. I found my voice and I use it all the time.
What would our lives be like without all these allergies…. without EOE? Where would we be in life?
I know one thing for sure, without those things in our lives, I would not have the same children as I do now. Yea they’d be the same people, but their personalities would not be the same, their approach to life wouldn’t be the same. And I would miss that. So I’ll take the food allergies, I’ll take the EOE. Because without them our lives would not be what they are.

Oh I’m on Instagram!!!!  Find me! Allergysupermom

The phonecalls are in!

RAST Survey Says!!
codfish
Tuna
Chicken
Corn
Peanut
Orange
Walnut
Wheat
Turkey
Mustard
Brazil Nut
Pistachio
Lemon
Almond
Beef
Cashew
White potatoes
Pork
Coconut
Garlic
Egg white
Egg yolk
Green bean
Strawberry
Soy

Environmental:
Cat
Dog
Timothy grass
Johnson grass
Maple trees
Box elder trees
English plantain weed

Phew! That was exhausting!

And the UNC trip is August 5th…. here we go! Things are really moving along. Getting excited!

We wait…

July fourth. This time last year we were waiting on scope dates, remarking how wonderful this day is.

I was naive to believe that we would be in a more healing place by now. The world keeps spinning no matter how much you try to avoid reality.

I sit here in bed, the other four (five if you count the cat) house guests snuggled up in their beds, blissfully unaware of the worry that seeps its way into my mind so late at night.

The sounds of coughing ring through the air as I hear our sweet middle child struggle tonight. He is taking a hard nose dive recently, and my husband wants to stay in denial for now.

The cold burn of the tile floor is still fresh on my skin. I fear we’ve only just begun our fight.

In this familiar situation I feel helpless. I’m stretched thin caring for Gavin, and now I have Patrick.

Surely the offices will be closed tomorrow. Friday we will get him on a PPI in severe hopes that what waits for him is just reflux. For now I listen to his raspy voice and the wheeze in his lungs.

I don’t have much of a faith anymore, I can’t tell you when exactly I lost it, only that I’ve been searching for it ever since. Nights like these make it hard to believe in anything.

A child should not fear food. The very basics that our body requires to sustain life should not jeopardise it.

I am so afraid, and no one gets it. I don’t even think they really WANT to know though. Not even my sweet husband. The reality of putting Gavin on a formula and possibly a G-tube is already too much for him. He said tonight, as I brought Patrick to bed with us, that it must be a cold or a virus. I can hope that I guess….but I’ve seen the underbelly of this disease.

I have sat up all night with a little boy so tired yet unable to stop heaving. I have been to every doctor appointment, held hands and cried tears with them. I see this dark cloud coming, as if it were a hurricane, straight for my littlest boy and I’m petrified.

And all I see as I close my eyes tonight is the helpless look of a three year old in pain, and the sound of him wheezing in his sleep.

We wait for those who have the privilege to leave these kids “at the office” to respond to our cries of help. We wait for appointments and lab results, for approvals and interviews. We wait…

Keep calm and Carry On

Two little boys…..one little bathroom.

We are pushing the boys to eat new things, of of them re things that showed positive on prick tests…. but they need to eat something so we try.

Two little boys feel independent, and typically don’t bring the mommy up to speed. I only get to see where they have been.

Two little boys spent a lot of time in the bathroom yesterday. I cleaned up lots of throw up. The bathtub became a the target. I don’t know where one boys retching started and the others ended. Neither wanted to inform me who did what.

Should I hope for it to be s bug? I’m not sure. But I do know I have two little boys who have been coughing all week. Raccoon eyes, eczema, and very very upset tummies. We’re in for it either way. I hate adding Patrick to the bathroom’s frequent flyer list though.

As I assess our luck, I decided that we will most likely get called to UNC for the week of August 26th. Gavin starts school that week, and Mark will be in Las Vegas as well. Just seems like our luck it will be then. We’ll see though.

Two little boys are already up and coughing up a storm. We shall play Thomas trains and watch Thomas movies until we feel better.