Yesterday was quite an adventure. AK was out of town and Annabelle's appointment was scheduled for 10a in Norfolk. My alarm went off at 5:45a but wasn't necessary, I had been up almost the entire night anyway, nervous about what the day would bring. I pulled myself together and everything for the girls, packed the car and then headed upstairs to get them dressed. Mady was so excited that I would be taking her to school that morning and even more excited that she would be able to go to Daycare before class (she loves going, and I feel guilty for sending her.. it's an odd combination.) By 6:50a I was on the road and heading east to kidnap Grammy for the adventure and find the beach!... err... hospital.
I've fought hard, VERY hard to secure this appointment. I have nothing against our current G.I. Specialist, I think he is wonderful and has the best Bedside Manner you could ask for small children. But Annabelle is not getting better. She is still very sick and I am not seeing the improvement I would expect from such a dramatic treatment plan. Maybe not dramatic in the grand scheme of things and in comparison to many EoE kids, but it's definitely the biggest change my family has ever had to make! As a recap; Last Monday I met with our GI and begged him to reconsider our treatment plan. I explained my concerns and he seemed to agree and would consult our Allergist that has prescribed the 12 meds she is on. The nurse called me the next day to inform me that our GI agrees and is sticking to the treatment plan; no changes will be made. At the same time I hung up the phone, I tuned around and Annabelle was coughing her little head off and choking. I said to her, "I will find you a second opinion. I'll find the best doctor in the state!"
That's exactly what I did. I called every hospital until I found Dr. Konikoff at The Children's Hospital of The King's Daughter's in Norfolk, VA. The moment I read that he came from Cincinnati Children's Hospital (one of the top two hospitals specializing in this disease) and that he only focuses on Eosinophilic Esophagitis, GERD and IBD - I was sold. I keep calling him my Golden Ticket Doctor! When I called to schedule, the soonest he could see us was July 1st. I accepted and then called Annabelle's PCP and asked if they could pull any strings to get her in sooner. Our wonderful PCP called and spoke directly to Dr. Konikoff and he got me in 3 days later :) I felt quite victorious.
So here we are. I have faxed all her medical records over. I have three pages of notes and questions written down. Videos to explain her EoE flares, the car filled with gas and my SuperWoman underwear on! We were ready for the day!
Children's Hospital of The King's Daugther's
I cannot go on without stopping now to say, this organization has a really, really great thing going. Top to bottom, without a doubt, this is a wonderful facility that really knows it's patients and the families that are traveling to visit. From the moment you valet (for free!), to walking thru the door greeted by happy smiles and helpful faces, you just know it will "all be ok. You're in good hands here." I felt my shoulders relax and drop and the world of ease when stepping over that threshold.
The first nice lady asked where we are visiting today, I told her Gastroenterology, and she gave both myself and grammy a sticker to wear on our shirt that read "..CHKD...... 4th Floor" How helpful, that tells everyone that works there and see's me on the third floor, that Im lost and "HELP!" :) But that wasn't the case.. with so much help here, you couldn't get lost if you tried. After getting our sticker and letting a squirmy Annabelle out of my arms to RUN and play in all the fun stuff, she directed us towards both the restrooms and Starbucks. Smart, smart lady AND hospital - we needed both after being on the road for three hours! After we secured our Caramel Macchiatto's another lady directed us towards the elevated, hit " 4 " for us and wished us a happy visit. I felt like I was in Disney World! For a mom of a sick child that is constantly full of worry and fear, this WAS like the Happiest Place on Earth!! ..wait, that's the circus. You get my point!
On the 4th Floor we were immediately checked in and directed to the first door towards Gastroenterolgy. I exhaled, more toys! AND Mickey da-Mouse (as Mady would say) playing on TV. Not 2 minutes after sitting, we were taken to the back. Height, weight, vitals and back into our room to wait for the doctor. The moment I sat down, our doctor walked in. He didn't know it but I already knew more about him than he could imagine, I knew what he looked like and in my eyes he was glowing with sunrays beaming off him as if he were walking in as Jesus about to heal my daughter with a single glimpse.
Annabelle was playing, enjoying washing her hands a little too much, so Dr. Konikoff just pulled up a seat and asked me to start talking. Well that's easy! That's one thing that I know how to do REALLY well! And talking about my kid... you might as well grab an extra cup of coffee!
Grammy was amazing, incredible beyond belief and took care of Annabelle the entire time, leaving to go back to the playroom after a few minutes and gave me and the doctor time to have serious discussions about what is going on. I started from the beginning, when she was in the NICU, leading to where we are now. What I appreciated most from this doctor, is that he did not disagree at all with our current treatment plan, he supported the doctors we are working with and what they are doing. Then he offered a different / his perspective with how he would handle Annabelle's case.
- The current treatment plan is great to treat EoE. We are doing everything right but in some very rare cases, that doesn't work. It may be the formula, although she vomits Neocate and refuses Splash. Or something else, not yet determined. OR maybe we are treating the EoE and the treatment is working perfectly fine and the EoE is actually getting better.. just on the surface, what we are seeing looks like EoE and perhaps it's something different. The only way to know if things are getting better is to take another look and get a newer Eosinophil Count to see if her numbers have come down. If they have come down from the upper 40s they were before: The treatment is actually on target and we need to investigate what is keeping her sick since it is not the EoE. If the numbers have not dropped dramatically: We have a problem and need to make major changes to her treatment plan.
- Her bowels have been very inconsistent lately. As they have since she was born. I have chaulked that up to the variability of her diet for so long that I haven't kept much of an eye on it until very recently. At this point there is nothing variable in her diet, it's only formula and consistent meds. But some days she will go 5 days w/o a BM and then have loose stools 4x in one day and other weeks she is regular. She has traces of blood in her stool often and at this point, for no clear reason. Eosinophilic Disorders can be in several different places, we only know right now of the disease active in her Esophagus but have not checked further. Dr. Konikoff believes it's time to dig a little deeper (no pun intended) and make sure that we have all the diagnosis covered before we begin treatment, expecting stellar results. He wants to perform a Lower Endoscopy at the time of the Upper Endoscopy.
- Feeding Tube. This has become a personal battle and war of mine. I do NOT, repeat do not want my daughter on a tube. I fear that the moment it goes in, it will never come back out. Dramatic of me, yes. But I also have this terrible mindset that if she is placed on a tube, that means I have failed in some way and didn't work hard enough with her to avoid that. I know it will be uncomfortable, painful, messy, life-altering, and just not pretty or an accessory I want my infant wearing. During this meeting however, I kept my mind open and didn't immediately cut the doctor off when he mumbled the words. We discussed the purpose, pro's and con's and in the end, I bought two more weeks :) Victory! He gave us a new med that can replace one we are already taking, but this one boosts her appetite and maybe she will eat thru those tough times when she isn't feeling well and get some more pounds on. She currently is not underweight.. but she is struggling to keep the number on the scale where it needs to be for an Elemental Diet (Formula fed ONLY).
..Dr. Konikoff sat down in that room for well over and hour talking to me.. He didn't rush anything that I had to say, he asked several questions and was extremely sensitive to the battle we are facing with this disease. He was supportive in every way and truly allowed me to lead where we wanted to go, by offering his medical direction and advice. Without a doubt, I feel like Annabelle is in the BEST hands at CHKD with Dr. Konikoff. There is no way I could have asked for a better day or experience than what we walked away with.
The hospital will be calling very soon to schedule Annabelle's Upper and Lower Endoscopy. I have two new prescriptions (that makes a total of 14 medications daily). And plenty labs that need to be completed for the procedure, including a trip to CVS for Miralax to prep for the Lower-Scope. Oh what fun this will be!! :)
Now. All that to say, at the very end of our conversation, he looked over and said "you look disappointed." It took me a second, and quite a bit of hesitation to admit, I kinda was. Deep down I thought we would be leaving Norfolk with a new game plan. Some miracle drug that I could put her on to solve all this. I even feared/prayed that I lost my Feeding Tube battle and it would have been put in and solve everything. The fact is, we were actually leaving with no changes to our current plan, except a couple added drugs that will not cure her.. just help a little here and there. I pray every night that THIS will be the last night she has to feel so yucky, be in pain, take all the drugs or be sick. I hate looking at my little girl and cannot help her, and to think "Next week she will be just as sick, if not worse". We didn't leave Norfolk yesterday with the promise of making her feel better right away, and I was really really praying we would. For Annabelle's sake.
I fully support the road we are on though. I agree 110% that the next step does need to be figuring out everything that is going on and finding something measurable to base our treatment plan off of. I look forward to the next Biopsy results to see what improvement (if any) we have made in the EoE in the last two months and I pray we find more explanation to why she isn't getting well. At this point, even bad news IS news and with that we know how to help her. Without knowing what is keeping her sick, we cannot help. I am grateful that Dr. Konikoff is willing to take the next responsible step to re-scope and I look forward to this experience with him leading her care at CHKD.
We finished our day at a great hole in the wall diner in Norfolk where Grammy and I split a huge seafood platter that held the best crab cakes Ive had in years. Annabelle feasted on Neocate Nutra but was full of smiles and giggles. Afterwards, somehow, no clue how it happened.. but we also sumbled upon the Williamsburg Outlets ;) And the girls racked up on plenty new summer clothes.
For the procedure, I am not going to even think about it beyond "which hotel do I want to stay at in Norfolk?" because if I wrap my head around my baby + anesthesia again, I will fall apart.
Yesterday was a good day. It was a wonderful day and was finished with shopping at the outlets with grammy and Annabelle. We got home around 5:30p, Annabelle was unconscious at 6:15p and I was out at 8p!
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