Busy Day at CHKD - Patch Testing, Day 1

Inhale. And now, Exhale.

I’ve been doing that a lot lately.. a LOT – conscious deep breaths and forcing oxygen thru my body in hopes it will protect the tears from falling and allow me to communicate without a tremble in my voice. Some days it works, some hours / minutes it doesn’t, but hey.. we only have to take this one moment at a time, no more.

Yesterday was very long but I would chalk it up as a Good Day. I cannot begin to tell you how excited I get to be able to write those words. The day came with a few hiccups, but Belle and I triumphed thru.

I decided to work all morning and leave just in time to pick-up Annabelle and head towards Norfolk. We got on the road about 11:30a and arrived at the hospital shortly after 1pm.

The drive towards Norfolk was tough on Annabelle this time.. she was feeling alright when we left and trying to drift off to sleep, but then she began screaming. My mom called during the time which made the conversation difficult to hear over Annabelle’s screaming and thrashing around in the carseat.. finally, like a switch, she stared off with a blank stare and she went out. I could reach back to her carseat and made sure she was breathing but she wouldn’t wake up. I don’t know what was happening, I don’t believe there was ever a seizure during that time but whatever it was terrified poor Annabelle and was causing her tremendous pain. This isn’t unusual anymore at all, this is becoming routine and nothing about it is getting easier to watch or experience.. and that’s me talking, I’m not even in Annabelle’s shoes! Sweet little girl, she is so strong and tough.

Checking in was a breeze as always and we caught the elevator to the 4^th Floor. There, we checked in for all our appointments at one desk and they informed me that the nurses in each department would be communicating with the nurses where I was and when I was moving between doctors. So efficient!

We began in Allergy with Dr. Maples.

Before I could put Annabelle down to play with toys in the waiting room, the nurse was already calling her name. We proceeded to the back and as soon as Annabelle saw the scale she sat on her bottom and took her shoes off.. stood up and then stood on the scale watching the nurse. She cracks me up. After that, Annabelle walked towards the measuring stick on the wall and backed up with her feet to get her height. When the nurse picked up the blood pressure cuff, Belle lifted her left leg and when she pulled out the thermometer, she raised her arm. The nurse was absolutely cracking up and thanking ME for how easy she was making this process… I on the other hand was dying inside that my 22 month old knows this drill like the back of her hand. No child should know this routine. Ugh, we have got to get out of the hospitals soon!

Dr. Maples joined us in our exam room and wanted to know what had been happening lately. I gave her the condensed 3 minute run-down and her and I discussed plausible explanations for what was going on. She immediately said, “Have you considered looking into Mitochondrial Disease.” My stomach literally sank so fast I paused for a second and had to hope I wouldn’t get sick. I’ve never felt my stomach drop like that before. I told her “Yes, however we are struggling to get an appointment sooner. The soonest MCV is willing to take Belle isn’t until August 22^nd” Dr. Maples looked at Annabelle and sighed with a concerned look across her face. She asked me to hold on and she left the room. When she came back, she told me that the only physician at King’s Daughter’s that may be able to help is a Geneticist.. unfortunately, that doctors partner passed away last night so the entire department is struggling right now and she couldn’t promise that even if this Geneticist was willing to see Belle, that she would be able to do so before August 22^nd because she is picking up double patients right now. She would be meeting with that team in the afternoon and we would discuss any headway when I see her again on Thursday. While Dr. Maples was examining Annabelle, she looked at me and said, “You know what?! I have two patients, they’re both siblings, they both have very bad EoE like Annabelle and they both have Mitochondrial Disease. Hmm..”

Dr. Maples decided to do a full panel of Patch Tests vs. only what passed during the Skin Prick Test last month. Our goal is to find as many foods as earthly possible for Annabelle to have. If things begin to take a turn for the very best for her, we will continue to slowly do Food Trials, one food at a time. . . we will have options for both scenario’s when it comes to food. . .

Placing the Patches isn’t painful at all, but Annabelle wasn’t a fan. She just doesn’t like being held down.. I don’t blame her. It was a fairly quick process, no more than 10 minutes total to get everything in place, marked and taped. 

Next we spoke with the Pulmonologist – there wasn’t a pressing reason why we needed to see him beside the fact that we would be entering the fall / cold / flu season in the next couple months and we needed to discuss the risk factors and seriousness of Annabelle getting sick during this time. We talked about what to watch out for, ways to protect Annabelle and our home and when to contact the doctors vs. going to the hospital. It was a quick chat but I am glad it was proactive to take place now vs. in the midst of the flu season.

After patches were in place and all our chats were finished, the nurse told us that Gastroenterology had been contacted. We packed our bags and headed down the hall to meet with Dr. Konikoff. Repeated the usual: weight, height, blood pressure, temperature, pulse, etc. Then we made our way into a room. Dr. Konikoff joined us shortly afterwards. For some reason, the moment he came into our room and shut the door, Annabelle decided that was the time she was finished being patient for the day and wanted to turn her attitude up a couple notches to prove just how much of an almost-two-year-old she is :) I welcome the attitude though, no, im not proud of it but right now I embrace every single emotion and opinion the kid has – she deserves every bit of it! She is still very well mannered and in no means a terribly behaved child at all, but if she wants to have a tantrum, so be it. I am happy to stand over her with my arms crossed and talk to the doctor like nothing is happening around my ankles! 

Dr. Konikoff and I discussed several topics:

• Food - I meant to ask Dr. Maples if/when we would actually be able to introduce the foods we were testing for.. and if so, how many would we begin with. The usual route is to try two foods at the most, allow Belle to have those in her diet for the next 6 weeks and then rescope and rebiopsy her GI system and look for any signs of flaring. If there are no signs and all Eosinophils are still low on pathology reports, then we continue to the next food or two and repeat the process. I asked Dr. Konikoff for more options... 
• Annabelle has been sedated and anesthetized so many times in only the last 2-3 months, I cannot imagine putting her back under just for potatoes. He asked what I wanted to do and I feel two completely different ways about this. 1) Eosinophilic Esophagitis is extremely serious and absolutely should be handled with an incredible amount of caution to not cause further damage to her tiny body, more than it already is from EoE. Allowing Annabelle to have many foods at one time has the potential to set her immune system into over drive, destroying her GI System and truly making Annabelle terribly ill. With that in mind, I want to take major baby steps to introducing foods again. 2) On the other hand. I want Annabelle to be able to laugh, play, eat food and enjoy anything and every single thing her little heart desires. From an extremely irrational stand-point, I want to be able to give her every food she is not allergic to, despite EoE. However that definitely is not keeping her safety and health in mind. Dr. Konikoff and I compromised. We will take the Food Trial process extremely slow and reintroduce foods every SEVERAL weeks as long as I am not seeing any signs at all of a flare or replapse. We will continue on this path until we decide we want to take a pause and scope. If/when Annabelle has any procedures at King’s Daughter’s where she is requiring anesthesia, Dr. Konikoff will coordinate that with the leading team for whatever procedure it may be, and he will go in also and scope at that time – to avoid an additional need for sedation. I love this plan. I love that nothing is set in stone, that I get to lead when we will scope next.. but most of all – I love the giddiness I feel that we just may be able to give Annabelle food again soon! No matter what, I really believe she will be able to eat soon. I cannot wait. My heart pours and beats so hard just thinking about that moment. It’s going to be so big :)
• We also discussed the fall and winter seasons from his perspective as well vs. the Pulmonologist concerns. I absolutely love the proactive approach these doctors take.. they are always thinking two steps ahead. These conversations prevent me from scrambling when the time comes to figure out x,y,z.. they have already answered my questions before they are even needed and given me the direction on what I need to do if/when I am faced with these scenarios. Dr. Konikoff is wonderful, I am so grateful to have him part of Annabelle’s team of Specialists.    

Finally it was time to head home! I would be lying if I said I wasn’t completely exhausted. Annabelle gave Valet our ticket for our car and we waiting patiently in the incredible July heat of Norfolk. Belle made a sweet little friend that was sporting the cutest backpack. She has a g-tube and the backpack fit on her tiny body so perfectly, it was nice to see in person and so heartwarming to see the smile across the little girls face. Both girls were wearing the same hot pink tutu and they loved shaking it for one another! Oh to be a toddler and have no fears or worries in the world, their only priority is finding each opportunity in life to laugh and smile.

The drive home was equally exhausting. Norfolk traffic stinks. Tunnel traffic stinks. Driving 460 in the pouring down rain is exhausting enough that I needed a drink when I got home. Belle did good on the way home. Just like she did when we got in the car to head towards CHKD, she started crying and screaming 30min or so on the road and then had a seizure. This time I watched what happened.. it kicked her butt but she didn’t fall asleep immediately, she wore a blank stare on her face for several minutes until she finally went to sleep. 

Annabelle woke up 20 minutes before we got home.. she was so sad and frustrated to still be in the car. I tried singing, talking, tickling, dancing, I offered Lambie and Gigi (blanket) but nothing worked.. finally I asked, ‘Do you want to see sissy?’, her little eyes opened to the size of quarters! She started jumping in her carseat repeating “Sisshy! Sisshy!” We pulled into the driveway and I don’t know who was more excited to see Madelynne; myself or Annabelle. We played outside for a quick bit and then went in to soak up the AC. I was so hot and irritated / exhausted from the day that I jumped in the shower and found my best comfy sweatpants and tshirt I could find before joining the girls in the playroom.

Annabelle’s night was up and down.. she didn’t have any more spells, and her walking seems to be improving a lot. The patches on her back haven’t seemed to bother her or grab her attention at all. She cannot have a bath until Friday night.. say it with me, ‘gross!’ but sponge baths seem to be doing the trick just fine. I found jammies that wouldn’t move around too much on her back or allow her to pull at anything and soon both girls were in bed. They both wanted a story each. . . and then wanted to read both stories twice, but how do you say no to beautiful little girls dark eyes and adorably grinning faces sitting in your lap looking up to you ‘Pweeeeeasee?!’ – ah, of COURSE I’ll read it again! . . and again and again. This entire ordeal is really turning me into a complete softy – some call it perspective and priorities, I am calling it ‘mom has put down her guns and turned into a complete softy’. Those sweet girls deserve every bit of it though. Life as they know it has been turned completely upside down for everything they have ever understood. This is not only Annabelle’s fight, it’s everyone in our home that is trying to take this journey one day at a time.. including the darn dog.

Today wasn’t a bad day. It wasn’t fantastic in the grand scheme of things, but it was productive and positive for Annabelle. No pain today. No needles. No bad news. She smiled a lot today, she walked today, she giggled and talked to us a bit. Best of all, she woke me up with a smile across her face and I put her to bed by tickling her tummy and seeing a smile that could melt even the coldest of hearts. Soon, doctors will help her, very soon – I can feel it.