allergies – Patrick Hoopes

Outgrowing allergies and other updates

I reread what I wrote last night and realized that I got tired and stopped short of finishing telling you about our day. I didn’t tell you anything about speech therapy.

After being away for 9 months, we finally decided it was time to go back to speech therapy. We only just barely arrived on time, because we were coming from the meeting with the school. Thank goodness my sister had tagged along to help with Patrick or he would never have done so well.

But he DID do well. His therapist hasn’t seen him in a really long time and it was fun to see her reaction to his progress. Because speech is one place where Patrick’s progress is simply amazing. Being able to find car keys like a french pig finds truffles, Patrick found his therapist’s key on his therapist’s desk, brought it to her and asked “Do you drive a Volvo?” She laughed and said that he’d graduated speech therapy.

No, seriously though. He’s come a long way but is still struggling with things like pronunciation and verb tenses and sentence and word structure. She started doing some testing yesterday. It was amazing to see how far his receptive (listening) language has come. He flew through that test with all kinds of new words. Amazing how 9 months of netflix can expand your vocabulary.

The expressive language, though.. the one where he had to say what he saw in pictures. That wasn’t flying colors. And it kind of demonstrated what I have been seeing. Patrick knows words. But recalling them to say that, that is hard. It’s part of why he is always asking everyone their name.

We had a good talk about attention and ADHD and attention and steroids. His therapist said she has seen steroids really affect attention before. And that lack of attention causes trouble with memory. It all kind of fit. Not that I know what to do about it. But it fit.

So that was that. Now we just have to get insurance to agree to pay for speech therapy again.

In other big news, I got a call from Patrick’s allergist this morning. (After missing the appointment, they had him call me.) He went through the blood test and scratch test results pretty thoroughly.. figuring out what is safe to try and what wasn’t. He told me to be very careful with some newly diagnosed allergies: soy and tomato especially. And he also gave permission to try some cow’s milk with Patrick because all the tests indicate Patrick may have outgrown that allergy.

When I offered Patrick a piece of cow’s milk cheese, he was quite fearful. It took half an hour to convince him it was ok to take a small bite. He nibbled a couple more and then, after a few minutes when he saw he was still safe, he grabbed that piece of cheese and gobbled it down. No reaction. So, later in the day, I gave Patrick a piece of string cheese. He really loved that. He asked for another later on. And then he tried to get to eat only string cheese for dinner.

I nixed that plan but did try some pasta with cream of chicken soup in the recipe. Fail. He got spots on his face. No worse reaction. But too many ingredients. I can’t tell you if it was the dairy or the soy or something else. But we’ll need to be more careful before we try that again.

What a tricky balance. Introducing Patrick cautiously to foods to find out how he’ll react. And then, on the other hand, trying to make sure that he’s eating as many calories as possible.

We cut Patrick’s tube feeds in half last night. Now, he’s only getting about 200 calories over 4 hours. I think it will work. I think he can eat the target 1800-2000 calories easily. But not if I cook him dinner and discover I made him something unsafe. Tonight I ended up making a whole extra dinner for him. And yet, I still don’t think he ate his full calories.

if Patrick can maintain or gain weight, the goal is to switch to all oral food next month. Knock on wood. This wasn’t the greatest way to start today.

Today was kind of hard all around, though. And not just because my hot pad slipped and I burned my thumb cooking fish sticks. That just set me back.

But knowing that school had started. Seeing the school next door bustling with life. And everyone’s first day of school pictures on Facebook, and Patrick asking to play with friends who are no longer home. And then us.. just trying to find the right balance of work and entertainment to get us through yet another day at home. I’ve been doing this for almost 9 months now. I am exhausted. And it’s driving through the middle of nowhere and finally spotting a town and needing the restroom and then discovering that the restroom where you are is out of order and you’ll have to go across the street. Holding on those last moments when you thought you’d made it to the finish line, but the finish line moved. It’s hard.

I look around me and I see so many things that have been just waiting. Waiting for me to have time and free hands. But that’s not the time right now for me. And with needing to be a part of training, it might not even really happen for a while.

At least the day ended well. Patrick raised his start to the ceiling of the Make-a-Wish building tonight. Family and friends came. We took a tour and we ate some cake and we visited. Patrick was exhausted and crazed.

But it was a moving moment to see his star go up with the others after all. Even if he did do the fastest ever.

I’d add pictures but they are on Brian’s phone and my battery is dying so I’m going to post now.

If you’re wondering why I’ve been acting a little crazy…

What an overwhelming two weeks I have had. If you’ve happened across me you may have found me forgetful, worried, tearful, distracted, jumpy, uncertain, self-consumed or any other manifestation of anxious. I live with anxiety. It’s been part of who I am for a long time. When we were undergoing fertility treatments, it kind of consumed me. Therapy helped teach me to live with it. And now? Well, it’s been a very stressful two weeks and anxiety has been thread running throughout all of it.

It is no surprise that this has been a hard stretch. I’ve been saying for a long time that my goal for August was just to survive.

Brian went to Europe (Ukraine and Poland) for work for 10 days. Wives were invited and I couldn’t go and that hit a lot harder as he got on a plane and left than it usually does when he has to travel. Also, this was one of those real long-haul trips. A long one. And a busy one so that most of our chances to talk to one another were stole little moments when one or the other of us should have been doing something else, like sleeping. And there is no real cure for a linguist and lover of travel and culture to stay at home while her best friend sees the world without her.

It was also one of those really busy times here at home. As I mentioned in my last post, we have been working with Patrick’s allergist, GI, and dietitian to try to switch him to oral eating instead of enteral (through a g-tube) feeding. I kept a 3 day chart of Patrick’s diet and learned that he’s eating just under 1600 calories a day. The goal is 1800-2000 and therefore, a few more bites at each meal and he may just be there. The log showed that he needs to get more protein into his diet, which sounds challenging since he’s still struggling with typical meats. But I introduced him to fish while Brian was away. (Brian doesn’t like fish). And to fish sticks. And he loved them. And, out of the blue, Patrick started actually eating roast which gives me hope that if I can just get the meat tender enough, he might be able to eat it. Meanwhile, I we are supposed to be encouraging him to eat the proteins he likes like soy cheese and hummus and lunch meat. (I have taken to buying a few of those little buddig lunch meat packets and sometimes just handing one of those to him to snack on.) Knowing he’s a touch allergic to soy, I switched to sunbutter, which was received with lots of pleased “mmm” sounds.

But the mission that really turned me into a basket case this past little while has been trying to make plans for Patrick to go to school. I had the chance to talk to his classroom teacher and also to the school nurse. And the vibe I got from both was worrisome. They both seemed totally great at their jobs. And they both seemed to feel completely in over their heads with Patrick. In fact, both asked me why exactly Patrick wasn’t in the medical hub when it was obvious that he has such big medical needs.

I had long conversations and I wrote long e-mails and I did everything I could to make people talk and work behind the scenes. But I couldn’t do what was really the most needed until today.. I couldn’t meet with the school. I miscalculated. Brian offered to send me to visit one of my dearest friends, Lindy, who lives in Seattle. Her family housed us through I don’t know how many checkups at Seattle Children’s while Patrick was waiting for transplant there. And when we moved our listing to Nebraska, Seattle became too far to travel. I haven’t visited in 2 years. And so, since he was going to be away for a long time and since we didn’t swing a family vacation this year, he offered to send me out to visit.

I wasn’t sure as I was getting ready to go that this was a wise choice, this travelling alone with Patrick when my husband was gone and I had to pack and get us there on our own. It didn’t go well. The day before we left I was anxiety personified. And I went to bed wondering if I’d completely lost my mind.

Thank goodness it was a visit to a friend who helps me piece my sanity back together. It was good to catch up. And it deserves its own post. But as usual, Lindy helped me to talk and work through some of my struggles. And Patrick basked in the love of this amazing family.

And then we came back home and dived into madness again. I didn’t even get to unpack for like 36 hours, things were so busy.

Yesterday I tried to juggle back to school shopping and phone calls and e-mails with Patrick’s medical team and cleaning the house and unpacking and making quality time with my son who is about to leave me during the day. And there weren’t enough hours in the day. And Brian was going to be home in a couple of hours.

And then… Brian’s plane got delayed. And I kept working. And the flight kept getting pushed back. And I started to feel guilty because I started to wonder if my prayers for there to be enough hours in the day were resulting in airport delays. But I just kept at it and soon enough had been done. Patrick was in bed. And my amazing respite worker had come over on no notice to sit with him so that I could go bring Brian home.

And I’ve decided this post is getting too long and so I’m gonna wrap it up with just this thought because today deserves its own whole post too. But here’s the thing…

I’m recognizing that I’ve been just getting by for a very long time. Almost a year. And now that school is on the horizon, I’m trying to piece my life and sanity back together. I’ve started to go back to therapy. And I’ve started to recognize that to let go of this crushing anxiety I’ve been carrying, I have to stop just shoving it down deeper inside.

When you’re just surviving, that’s what you do. You put it down deep as far as you can so you don’t have to look at it and you just carry it with you while you move on. Like when you are at the store and they hand you a receipt and you don’t have really anywhere to put it so you tuck it into your purse. And before you know it your purse is all filled up with wadded up papers and wrappers and odds and ends of spilled things. And you just keep carrying them around because it takes effort to get things back out and look at them and figure out what to keep and what to throw out. That’s where I am. I’ve got all these things tucked down because I didn’t have anywhere to put them. And I’m hoping that I can get them back out and let some of them go.

So you might see me a little bit weaker for a while. It’s ok. That means I’m trying to work through some things. Anxiety is part of who I am. I’m pretty good at squaring my shoulders and pushing forward. But when I get a second to be myself, I’m going to need to work some things out. And it might look messy while I get through it.

Watch out for waterlemons

A week ago Saturday, we decided to go out for breakfast at Paradise Bakery. Because of nut and egg allergies, we brought his breakfast along, but when he asked to play with my fruit cup (practicing his fork skills) I agreed.

He picked up a piece of pineapple, dropped it, and gave a very big scowl. I looked to see what was wrong and discovered a long, thin cut in his finger. I thought maybe one of the finger pricks from the previous weeks’ hospital stay hadn’t healed and was infected.

So, when we got home, I put some neosporin on it, and a bandaid. That night, when I changed the bandaid, Brian pointed out that the rest of that fingertip and the one next to it looked like they were burned. We asked Patrick how he got hurt. He said the “waterlemon” poked him.

We kept doing bandaids and neosporin. And then a couple of days later, I bumped Patrick’s other hand and got the same reaction. He jumped, pulled back, scowled, then started to cry. I looked and, lo and behold, the other hand was dry and cracking too. All of his fingers looked calloused, dry, flaking and cracking.

I panicked a little bit. TPN dependence means risks of nutritional deficiencies. Zinc deficiency causes horrible flaking skin ulcers. Fatty acid deficiency can cause dry skin, but only once it’s severe enough that you also start wondering about brain development.

I called his dietitian and made her check his labs. They were ok, except a note about low Omega-6 fatty acids. The doctor had just said he thought it was ok. She suggested I rub Patrick in safflower oil.

This created quite a quandary for me. Last time I tried safflower oil in Patrick’s diet he had an allergic reaction because all culinary oils are processed on the same equipment so safflower oil can have peanut oil and almond oil in it.

So I decided to start using his regular eczema cream and keep asking.

I got a good picture of the problem and sent it to, well, everyone. His nurse suggested an allergy to the bandaids or neosporin. His GI and I had a long talk where we discussed ways to get him more fatty acids from increasing the lipids in his TPN to feeding him microlipids through the g-tube, to rubbing him in it. (Which I put more effort into. We stopped at Sprouts market that night and read every label until I found a lotion that had safflower oil, but nothing else he might be allergic to.) Finally, the University of Nebraska called back and said that Patrick’s labs had looked good in February and could not have possibly tanked that quickly and to stop worrying about deficiency.

So then I turned to Dr. Google. I try not to research symptoms on the internet. However, Google Images is a wonderful took for looking up skin conditions. I looked up pictures of zinc and fatty acid deficiency and they didn’t match. Then I looked up pictures of cracking fingertips and I found it…

Fingertip eczema. Caused by… a systemic allergic reaction due to prolonged exposure to an allergen.

I ditched the bandaids. Switched to hydrocortisone cream and aquaphor… kept rubbing Patrick in the safflower lotion for good measure because of the other deficiency anyway. And I stopped cheating Patrick on his benadryl pretreatment.

Because Patrick is allergic to vancomycin, the antibiotic they started him on 3 weeks ago, he is supposed to get a very high dose of benadryl before every dose of antibiotic. But that high dose does a number on his gut, not to mention his concentration and his mood. So when we came home from the hospital, I started backing off the dose.

So we upped the dose.. and then we got hospitalized and they took him back up to the full prescription strength. And they made him stay on vanco a few extra days in case that was the cause of the fevers, and then finally let it be discontinued.

Patrick’s fingers almost immediately started to get better. They are still dry and we are still doing a good lotion regimen a few times a day. Patrick voted down a few brands, but is really in love with Aquaphor (“Apa-poh”) and several times a day will ask permission to just dip his fingers in it. This is helping a lot.

Poor little kid.. as if there weren’t already enough other things to worry about this month. And I still can’t convince him to lay hands on another “waterlemon.”