Patch Testing, Day 2.

I underestimated how yesterday would go for Annabelle. I promised her ‘No Pain, No Boo-boo’s’, and I lied.

Mady has been struggling a lot more lately. She is going thru an equally hard time adjusting to the chaos of our life.. and I don’t blame her at all. Sometimes she acts out for attention, sometimes she will do things that she knows will make me mad, most times she will color or paint me pictures while we are gone “So I don’t forget about her when we are at the hospital” (heartbreaking!), and finally, this week she sat down and started crying her little eyes out. I begged her to tell me what was wrong and she finally spilled her little 4yo heart out “You don’t love me like you love Annabelle. You don’t play with me anymore and you only talk to Annabelle. Annabelle is daddy’s best friend forever, and you are MY best friend forever..” My heart literally crumbled. Mady has actually gotten more one-on-one attention than she ever has before, but both our girls are being divided like that – Mady gets to stay up later and cuddle and play with us, I take dates out with her often and do secret stuff that only girl BFF’s do, but Mady also recognizes that every single day mommy comes home from work and has to gather Annabelle and all her things and fly out the door.. while Mady is left at the house and waves goodbye from the front window. I know it’s hard on her, I’ve known since all this began that it would be a really tough balance, but none of that prepares you for seeing the tears fall because your Four Year Old’s HEART is hurting so badly.

I worked yesterday morning and wrapped so many things up, I thought my head would spin off my shoulders. I kept playing over in my mind everything I needed to get done yesterday: I needed to make several phone calls, I needed call a couple hospitals about bills and invoices, I needed to jump on another prescription battle between physicians / insurance company, road trip to Chesapeake, pack diaper bag and gather notes for the doctor, etc. On the drive home my stomach sank when I pictured Mady with the tears falling off her face as she waves bye-bye thru our glass door and I am driving away with Belle. A light went off, “She’s going with me today!” I got home and began gathering things and pulling up driving directions online, Mady knew the drill.. she knew I was running around and getting ready to leave and she started getting sad. I turned around and said, “You know what, do you want to go to the hospital with mommy and sissy today?” Our sitter dropped her jaw – I looked at her and said “yup, you too lady! Were all going today! We all get to take a road trip together and see what a day is like for Baby Belle, who is ready to go?!” Everyone ran around like crazy and within less than 5 minutes the car was loaded and we were East Bound towards Chesapeake.

 

We hit the road a little later than I planned.. I take that back, we got on the road exactly what time I did plan, but I was completely backwards as to where Chesapeake actually is. A big ‘DOH’ on my part. For some reason I was thinking Chesapeake was between Williamsburg and Norfolk.. it’s actually further than the CHKD Hospital instead of much closer. Dr. Maples wanted us to meet at one of their satellite locations, which I certainly appreciated to not have to navigate downtown Norfolk – but I just didn’t think it was 2hrs away!

Anyway, I decided to take 460 and made up some time. We ended up arriving with only 3min to spare, so it wasn’t too bad. We checked in and were immediately taken back to our room. It was a very quick process once we were in the door. 

The nurse hardly asked any questions and I undressed Annabelle so we could take the patches off. Here’s the thing: I never, ever even considered how bad these patches would be to take off. And I am kicking myself for not thinking about that! How could I overlook something like that? When you cringe over the thought of ripping off a bandaid – quadruple that pain, and Im not exaggerating. If you’re a woman and had an epidural – Do you remember when they ripped that tape off your entire back? The clear, tape stuff that they use to cover an IV site is very similar to what covered Annabelle’s entire back. And not only was the tape bad.. but she wore it for two days and was hot hot hot, sweaty to make sure it melted good into her skin so when we ripped all this off – it took her skin with it. My goodness, it was beyond painful to hold her down, I just know it hurt so bad! The nurse removed most the extra taping around the edges, but when it was time to remove the actual patches, she didn’t have enough nails to really pickup a corner. It was taking so long, and poor Annabelle was sweaty and fighting with every single thing she has, begging to be put down. She was crying so hard and I just knew she was miserable.. the process was not short lived, It. Was. Taking. For. Ever!

Finally our sitter stepped in and instead of helping me hold down Annabelle, she asked the nurse if she could help remove the patches, our sitter had tiny nails, just enough to grab the tape and pull them. She was able to remove all the rest. As soon as she started to pull the first row of patches, she paused, I thought she had stopped – the sitter later told me that she had to recollect just how hard and strong the tape was and she had to rip with all her might to pull them off!  

Madelynne was standing right in front of all of us, watching Annabelle in terror. I kept telling her “It’s ok Mady, do you want to rub her leg?" (because that’s all she could reach), and she did.. Mady didn’t seem terribly upset, she just seemed very curious and concerned for her sister. On one hand, my heart broke because I don’t want Mady to have to witness her sissy like this – and on the other hand, there wasn’t any blood this time, there wasn’t a million doctors and a procedure being performed, just lots of crying and plenty pain – While I always want to shield my babies from seeing something like this, I also wanted Mady to understand what her sister is going thru. I wanted Mady to understand “when mommy has to take Belle to the doctors, we are not going to a play place without you – there are not lollipops and giggles that you're missing, and when mommy and daddy have to jump because Annabelle is in danger, it’s because your sissy is really sick and she does need our help.” I am actually grateful that Mady (unfortunately) had to see what happened. She was very sympathetic to her sister after it was all over, she gained a tremendous amount of patience for her immediately and seemed to appreciate how much we were helping Annabelle after the process was finished – she also needed to see that mommy is here to help Annabelle, just like mommy is always there to help her. It was a good learning experience for her, and probably the best timing to expose Mady to what Annabelle is going thru on a daily basis. I am grateful for yesterday in that respect.

Once the patches were removed, we had to spend a lot of time marking her back in every area the tests locations once were – using a pen. It didn’t matter if you were just looking at Annabelle’s back or trying to mark a dot, she didn’t want anyone near her. It was quite uphill from there, but again, I don’t blame her. Fortunately we all knew the painful part was over and soon the doctor was joining our room to do the first reading. So far, only 4 things were already showing positive for a reaction, those four things were ones we already knew of: Milk, Soy, Wheat and Oat (I believe)..

Finally it was time to go, wahoo!!! Annabelle was less than thrilled, she was so very ready to leave. Her poor body was beyond exhausted. We did not have to reapply any patches, we just have to keep everything exposed and absolutely no water or washing anything off. The next reading is Friday at 1:45p at the same location in Chesapeake. Fingers crossed for positive results. And hopefully we can have conversations about when we can start food. I cannot, CANNOT wait until the moment I can feed my baby food, oh gosh I am so excited!!!

Dr. Maples did inform me that CHKD CAN do testing for Mitochondrial Disease. A surgeon will perform the biopsy’s in the OR and Pathology has the ability to read the results and do the testing. Now, the only thing I need to do is find out what doctor can order those tests and see if I can get Annabelle seen by them – I am filling my pediatrician in on all this currently and hoping she isn’t still too mad at me to listen. I’ll do whatever I can, and if this is the soonest I can get answers for my baby girl – so be it. It’s done.