I woke up this morning in such a daze that I blinked at my ceiling wandering if I actually slept last night. When I sat up I felt nauseous and looked down at my shaking hand. It then occurred to me, yes I did sleep last night and my last dream was receiving today’s test results and hearing over the phone something/anything I didn’t want to hear. This is only round two of scope’s and already I hate the waiting process. Fortunately we had the distraction of the weekend and Memorial Day to keep our minds off the wait. But nothing about today would be easy, because I will stare at my phone every second waiting for that 757 area code to appear with the much anticipated news.
I joined a group of co-workers for lunch and then headed back to the office. I don’t think I’ve ever been so productive at my job. I was knocking things out left and right, making changes and finding updates everywhere. Finally at 12:50p I couldn’t take it any longer, I called CHKD Gastroenterology. The kind nurse informed me they were out to lunch. I called back at 1:15p and the next nurse took my information to give to Dr. Konikoff. I stared at my phone for literally 40m expecting it to ring and it didn’t.. at 4:40 I called back. The LAST thing that I wanted to happen was for the office to close and I have to wait until tomorrow to hear anything. I mostly just wanted to know whether or not the results were even in. If a nurse could tell me that they were not back, than I would be able to relax a bit.
4:50pm my phone finally rang and should have practically been singing angels echoing from my phone’s speaker, as excited as I was! Dr. Konikoff genuinely said “Hi Ashley, how are you today?” I wanted to respond, “ON FREAKING PINS AND NEEDLES BUDDY! WHAT DO YOU THINK?!” However, I was cordial and chatted for a few about how Annabelle was current doing before we went on to the test results.
The results came with some good and some bad. Some discouragement and some encouragement.
The Good: The Eosinophil count in her esophagus is doing tremendously better. The counts in the top of her esophagus were practically cleared; counts in the bottom are still present and still too high to be considered in remission but they were definitely lower. The Encouragement: The treatment we have been doing for the last two months is working. The no-food, 14meds x day, coughing/fussing/crying has all been worth it to help her esophagus heal. The Discouragement: This tells us that since it is not the EoE continuing to flare, the reason she is so sick and not feeling well is very likely a result from all the medications making her feel this way. But because the meds and treatment ARE indeed working, we cannot take the chance to make any changes to the meds because the alternative is too dangerous.
The Bad: Eosinophils were also found in her intestines and colon. The number wasn’t extremely high but they were elevated enough to cause concern. Dr. Konikoff explained that the low numbers are very likely a reflection from the treatment we have been doing the past two months and therefore probably look really good. Considering we didn’t do the lower Endo last time, we don’t know what that count originally started at so it’s hard to gauge how much progress has been made. It is very likely that this area was also highly flared in March and the treatment has brought it into the promising resonable level that it is now. The Encouragement: We now have an explanation as to what has been going on at the lower end of the Gastrointestinal Tract. The condition everything looks on the inside and the current Eos counts, we’ve decided we’re not going to pursue any additional treatment. The Discouragement: This nasty disease isn’t only in her esophagus. She could now be battling it in other areas. Tests, procedures, scopes will likely always been twice as invasive, twice as long and 5x harder to prep for. Maintaining her weight, nutrients and thriving will be harder but at least we understand what is going on, and we will have a bit more patience for her weight moving forward.
SO! One of my biggest concerns and questions still stand. Can we try to introduce a food?
Answer: No. Not yet.. but we can get started on the process.
We are still in the process of moving Annabelle’s records over to CHKD and getting setup to meet with the allergist that Dr. Konikoff recommends. He did warn me that it may take a while to be seen with her, but the good part about that is hopefully we can see him at the same time while we are down there.. and truly there is no rush because we can’t begin a food until she’s in remission. Our best guess will be in about two months. (which is MUCH better than the September/October date we have been expecting)
Finding a food will be as simplistic as finding a needle in a haystack. Annabelle has to pass three separate tests to deem a food “safe enough” to trial: Skin Test, Blood Test & Patch Test, all performed at CHKD. If she can pass all three, we will introduce that food into her diet and watch her extremely close – documenting every single thing. If she begins to show signs of a flare or reaction we will stop and treat the flare with the boost of steroids and begin everything we’ve been thru the last two months to bring it under control. If she seems to be doing well, 8 weeks later we will re-scope. If her Eosinophil count has spiked or is elevated, we consider this a failed trail and the food she was eating a “Trigger Food”. It gets removed from her diet, again begin the steroid treatment and then move on to try to find another food. Meanwhile she will be back on formula only – and I can say for certain already, she will NOT be very happy. On the brighter side: If everything works out well and her Eos are not elevated, we consider this a “Safe Food”, she keeps it in her diet and then we move on to try another food.. repeating the process.
Our fingers are crossed that we find a safe food right off the bat, for sweet Annabelle’s sake. I don’t want to ever have to take another food away from her again. I trust the allergist we will be working with. She only works with other EoE children and I believe she will help guide us to make the best informed decision when it comes time to begin trials.
In the meantime, we’re waiting to hear from the hospital for scheduling that appointment. We are also keeping a very close eye on Annabelle and her current coughing issue. The last time we did this procedure, on Day 4 she ended up in the hospital with Tracheitis. She was fine for the first couple days and then on Day 3, while we were at an appt. she began this choking/coughing round of fits in front of the doctor.. she seemed puzzled and prescribed us an additional steroid to be used with her line-up of nebulizer treatments. That night Annabelle coughed and choked the entire night, I called first thing the next morning and the doctor could hear her over the phone choking, she became nervous and advised me to continue repeating the treatments and if we don’t see relief in the very near future, take her to the ER. That day I took the girls out for some fresh air and while driving down the road, Annabelle again began coughing and choking so bad that she could hardly breathe.. she was gasping and wheezing so heavily she couldn’t even cry any longer.. she just stared at me with wide open eyes. I ended up in the hospital with two girls for the entire day. They pumped her with plenty steroids.. her oxygen levels were so low they kept an eye on her for a while and we finally went home. What we learned that evening is that sometimes children have these type of reactions after being intubated for a procedure.. things become irritated or inflamed.
So here we are now, Day 5 since the procedure and she is coughing her little head off. She woke up this morning coughing pretty heavily. We began nebulizer treatments and hopefully will see some positive change very soon and she gets better. So far, the cough is only getting deeper and progressing faster into a bark/choke. It’s almost like a textbook watching her progress as she did the last time. Im holding out though before taking her somewhere. When Dr. Konikoff and I discussed this, he understood what I was explaining and welcomed her to come back for him to see her but he also knows that this does NOT warrant a 2hr drive for just a cough. He wished he could offer more help but he cannot prescribe meds over the phone without actually seeing her. The best advice he could give would be to have her seen as soon as it turns any worse from moderate coughing. . . . Im still trying to hold out. Is it sad I look at my schedule and pray, “Annabelle hunny, I have off work Friday. Do you think you can wait until then?” lol. Story of my life lately.
The girls had a great Memorial Day otherwise. We kept everyone pretty busy and entertained this weekend.. that may very likely be my fault, begging for distractions to waste the time. We tried to spend a lot of time outside and doing things that both girls enjoy. Mady has been such an amazing big sister and proving how resonsible and helpful she is lately so I promised her a trip to Build-A-Bear if she continues the good work for the next couple weeks. I was so touched by her sincerity when we came home from the hospital last week with Annabelle, and watching Mady's concern for her baby sister that I knew it was time to make that Build-A-Bear trip soon. Annabelle also loves stuffed animals (although NOTHING compares to Lambie) so she also made one for being such a brave little girl. It was a nice day enjoying the beautiful weather outside and became the perfect distraction that we all needed.
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