Friday is when the fun was scheduled to begin. I was so grateful we were able to sleep in and not hit the road early. The girls woke at normal time, around 6:15am and we lounged around before breakfast and then started to get ready.
While braiding Annabelle's hair, the questions began, "mommy, will there be any pokes today?" I couldn't promise her there wouldn't be but I told her that I really didn't think there would. She seemed content, nervous but satisfied with my answer.
Our first appointment was at a different hospital location than the main campus and was only about 20m from where we were staying. We met Dr. Burrows for our Sleep Study follow up. The findings were impressive. In my opinion, Annabelle was so exhausted the night we performed the study that I thought she slept sound! However, the results revealed quite the opposite. The positive is that it did not indicate any signs of sleep apnea, thank heavens. But it did reveal 78 episodes of movements in her sleep, averaging at over 9 episodes x hour. With these episodes, her body would come out of whatever state of sleep she was in at that time and then begin again... keeping her body from being able to fully succumb to solid REM sleep and capture rest. It's similar to restless leg syndrome in a way.. where your limbs muscles spasm and keep you from being able to remain still and fall asleep.. or in belles case, stay asleep. It's called Periodic Limb Movement Disorder.
In an effort to fully diagnose this disorder and treat it, they would order labs. Fortunately, a different doctor already ordered those same labs for another reason so we were able to avoid more lab work and just pull the results from the existing that we had already done (we did those in July). The levels can range anywhere from 0-100 but it's important to have the number towards the top end. If the number is less than 50, it's a cause for a concern, but for this particular diagnosis, it's a confirmation for the disorder. Annabelles level came back as a 14. Yes, a 14. She compared this number to another on the law work and it supported the same. So there we have it, another diagnosis in the books and likely an excellent, solid explanation for why she's never slept thru the night, stays tired throughout the day and struggles to focus.
So here's the fun part. The easiest, least invasive treatment is to supplement her diet with iron. Seems easy right? Not for this kiddo.. she's undergoing surgery tomorrow for chronic constipation, encopresis and has a disease eating her GI system. We flood her body with miralax and senna daily, and they want to add IRON?! There's just no way.
So we're exploring what to do. There are a multiple of other drugs we can consider, but we're reluctant to give meds at this point in Annabelles care. I do want to help her gain quality sleep and rest, but I can't jeopardize the work we're doing to her GI system.. we'll see how things go. We'll make a final decision on our treatment plan after this weeks surgery.
After the appointment was over, we headed to the main campus for our next two appointments. The first was to see Dr. Kaul. His staff took us back promptly and the girls played games while we waited.
Unfortunately, there was an emergency with a NICU patient of Dr. Kauls and he had to go to the OR. His nurses were very apologetic but we assured them it was ok and we would keep the other family heavy in our prayers as we waited. They asked we go grab lunch and return at 2pm, while making Annabelle a salad in the cafeteria, I got a call from the hospital, it was the nurse asking if we would like to perform the Anorectal Manometry now vs at 4:30pm since we had an opening in our schedule. I quickly accepted and we made our way to admitting. Daddy and Mady finished their lunch and agreed to meet us upstairs once we were admitted and finished that long process... to our surprise though, things progressed extremely quickly once we were in admitting.
They immediately checked Annabelle in and escorted us upstairs to 4N where a team was waiting for us thru the double doors. We were taken to a very sterile "procedure room" where it was anything but welcoming. Heck, even I was intimidated at all the equipment and machines surrounding us. Annabelles eyes swelled and panic took over her little body. The nurse assured her that all the things in the room were not for her and she would show Annabelle the only things we planned to
use. Child Life was scheduled to be with us later that afternoon so they didn't make it for the procedure.. my heart sank as Annabelle pleaded with her facial expressions to leave. She was alone in a room of just mommy and nurses and she knew all too well that this wouldn't end nicely for her. She didn't stand a chance trying to voice her opinion, she knew she didn't get a vote towards what was about to happen.. all she knew was that she was alone and not a single person in that terrifying room would rescue her.
Our nurses were wonderful. They worked very quickly and efficiently and didn't waste any time to allow Annabelle to think about what's happening, I believe this was a perfect strategy. It didn't give her any time to panic and fight, they were very matter of fact and moved so fast that even I didn't get a moment to hesitate or talk to Belle.
The procedure was....... awful. And that's truly all I want to share. Annabelle endured more than any child should ever have but she did it without a fight (I have no idea how). We began the procedure with her begging that I hold her hand and sing her a song, within minutes she said she didn't want me to talk to her and she wouldn't let me touch her. I stepped backwards from her line of vision and respected her wishes. I told her I love her very much and was sorry, but very proud of her for being brave... tears poured from her little face in complete silence as she laid there alone on the table enduring the unimaginable. My heart was numb, my body was motionless and the gut wrenching knowledge about what was happening to my baby literally made me want to puke.
AK called during the procedure, and because neither of us expected things to progress so quickly, he missed his opportunity to be in the room with us... Annabelle was silent, crying and broken but she wasn't moving or fighting so I told him not to come upstairs and to just wait until we were finished. I didn't want her seeing daddy or sissy to upset her more and I knew the more cooperative she was for the nurses, the faster it would be over.
After the procedure, Belle dressed herself and climbed back in her wheelchair. We made our way back to Dr. Kauls office where he joined us with the manometry results.
Unfortunately, the manometry revealed everything we feared, that she indeed has extensive damage to her lower GI and has caused quite a bit of work to correct. The good news is that we expected this all along and planned for it in the OR, the bad part is that I had been praying the doctors were wrong :(
Dr. Kaul was so loving, funny, witty and honest. He explained what he would be doing while in the OR and answered all our questions. He was very gentle with Annabelle as he knew what she had just experienced.. she still wasn't speaking to any of us yet she was accepting of the Doctor. This little girls bravery and courage is so admirable, how she doesn't fight everyone in a lab coat is beyond me... then again, it's probably because she's been so defeated by the medical world that she's learned she doesn't stand a chance in the fight.. nonetheless, her courage is heroic.
For dinner, Belle wanted a bowl of olives. Yup, that's all she wanted. So to an Italian restaurant we went where we all ordered enough pasta dishes to take back to the hotel to warm for another dinner the next night. During dinner, she began to open up. Sissy laughed so hard she snorted at a joke and Belle burst into laughter at her.. our table began a laughing snorting fest just to see the smile on their faces. AK and I exhaled... thank you god for giving this little girl her laugh back.
We slept well and Saturday morning the girls woke early for Great Wolf Lodge! You could tell Annabelle was still apprehensive to trusting us and forgiving me but Mady was a great distraction and liason between the parents and Belle. The girls had a wonderful time playing in the water park, hand in hand they ran all day laughing with one another.
Thank you god, so very much for the ability to provide my children with the best experience they can have in such a hard circumstance. Thank you for giving me each of these girls, although I don't understand why all the time, I know they are shaping our family to be the best we can thru each step of this journey. Most of all, thank you god for giving my girls one another. They argue, they bicker but they balance, hug, support, understand and trust one another in the most honest and pure way. They need each other and I am so grateful they are in this together. Our journey is shaping both of my daughters into such beautiful little ladies inside and out, in a way I could have never done on my own. For that, thank you.
Tomorrow is surgery day. Aside from Annabelle's surgery at 2 1/2yrs old when we removed so much of her esophagus and stomach, performed her Nissan and placed her Gtube - this will be the next biggest surgery she has ever had.
This is her 27th round under anesthesia and my heart is in pieces. The doctors will be performing:
- Lower GI reconstruction of her colon, rectum and large intestine, removing anything that's damaged and repairing anything that's salvageable by dilating and stretching the muscles and injecting all 4 quadrants with Botox to regenerate the cells and help relax the nerves.
- Upper endoscopy to including taking biopsies in her esophagus, stomach and small intestines while they do a visual inspection of the integrity of her Nissen and damage from when the disease was active in the spring (prayers we have made it to remission but we won't know until Thursday.)
- Muscle biopsy where they'll remove a 3 in sample of muscle from the top of her leg.
- DNA extraction (method still isn't determined, it may be as simple as blood work, platelets, or removing spinal fluid, we will determine tomorrow morning how the extraction will work.)
- Last but not least, Annabelle also asked if the doctor would change her tubey while in the OR. We brought an extra gtube with us, but as sweet as they are, they will let us keep our own G-tube and they'll use one of the hospitals instead :)
Tonight we will leave Great Wolf Lodge and check into our next hotel where we will stay until Thursday. Annabelle will be cut off from all formula at 315am and switch to clear fluids (pedialyte) via gtube at that time. She'll be NPO by 615am. 8am we meet with our Geneticist and discuss our plan for how and what information we're prepared to learn from the tests. 945am she will be admitted back into the hospital and surgery is scheduled to begin at 11:18am. At this time we have no idea how long everything should take, so please please please take a moment tomorrow morning and say a prayer for Annabelle and our family. Pray for the comfort of angels to surround our baby girl as she goes back under the knife and endures her 27th surgery in 3 1/2 years. Pray for the guidance and skill of all the surgeons working on my daughter and peace for our mommy and daddy heart as we wait in the waiting room. Dear god, please keep my baby girl safe.. she's so strong and we are so close to gaining our diagnosis.
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