Wednesday, April 13, 2016

Upper and Lower Endoscopy, biopsies and 23rd round of anesthesia




Honestly, considering where we started and how far we've come, I cannot complain about an ounce on how Annabelle is doing on this trip. She's handled painful procedures like a pro, the hospital has been very keen on addressing any anxieties she has and allowing us to make a lot of decisions for her. All things considered, things have run pretty smooth.
(For the record, I LOVE this kinda blog update :) )

Since our OR time wasn't scheduled until 1:55p, we spent most the morning being lazy, painting, doing arts and crafts, watching movies (we watched Matilda, because I got to pick the movie this time hehe).









The doctors and GI team made their rounds at 9am and we joined them for Annabelle's briefing on her case. I love how they do this. All the doctors on the floor, research team, specialists, and our nurse stand in the hallway outside of our room with their computers and we join in a circle. Our nurse then briefs the team on why we are here and how Annabelle is doing. The main doctor explains to the team what our plans are for Annabelle while she's on the floor and during surgery. They ask if we have any follow up questions or concerns and then they wrap up our case.

(Here's a random internet picture of what this looks like)

It's all open, we are intimately part of every detail of Annabelle's care, just the way it should be. After were finished, we go back into our room and shut our door for them to move onto the next patient. 


The OR called for us shortly after 1p and transportation rolled us to pre-op. Annabelle began to get scared for the first time, she was breathing terribly heavy and had silent tears falling from her eyes. 

"What's wrong sweetly?"
"I'm scared mommy, I don't want surgery anymore. I just want to go to our hotel, please."

She has been so brave until this point. And she still was, but she was nervous. Our room was no longer decorated beautifully with a Disney movie on the TV, instead, we were now in a holding cell with lots of monitors, beeping machines and teams of doctors, anesthesia and research specialists talking to us and surrounding Annabelle's bed. She had every right to be intimidated. We both gave her our cell phones, she played games, took selfies and even snapped pictures of mommy and daddy lol (excuse us, we look like hell)


Finally, Dr. Putnam made his way to see us, this was a relief to Annabelle, she loves Dr. Putnam and was so happy to see him. We quickly discussed our game plan and he noted that we were next in line for the OR and he would see us soon. 



We moved into the OR where about 15 people were standing around and waiting to begin. I feel like such a fish out of water when we go in here.. they're all staring and watching us silently as they work to organize their last things. I eye each and every one of them, trying to smile, but in my mind screaming "keep my baby safe. keep her alive. Take care of my baby. You. And you. And you. And you.." I can't help it, each and every one of them are accountable for my daughter from the time I am escorted out of that room. I don't know what their roles are in the OR, nor do I care, but my expectation is that they all keep her safe. each and every one of them. 

The anesthesia team (initially) followed my request to repeat the same procedure as we did last time for keeping her comfortable and asleep. They administered Versed and within 20-30 seconds, she was drunk.. Just the way I like to see :) this relaxes her so she isn't as anxious when they put her under and she wakes easier without panic. Next they gave her Propofol which usually does the trick without needing the gas to knock her out. Anytime I see Propofol though, I have flashbacks to when we attempted to use it for an EEG and she fought it with every dosage until it was too dangerous to continue so the anesthesia team ended the test bc she wasn't responding appropriately. It was terrifying and I wish I never witnessed it, it's scarred me. She wasn't even 2 yet and was so, so sick ...


This time though, when they gave her propofol, I watched and her eyes bolted open in a panic just like they did three years ago and my heart stopped. I didn't want her to fight or be scared, I immediately crouched down next to her and told her we were going to take a nap together, and she laid her head back down. I told her I love her so much and sweet dreams, she gave a half smile and closed her eyes. That's when the anesthesiologist put the gas mask over her face and we were escorted out. 

This video shows right after she had versed and when they administered Propofol, I cut it off when I noticed they were giving the Propofol and she was trying to sit up.. 



We made our way to the waiting room and found our usual seats, right in front of the monitor that relays how Annabelle is progressing thru the OR. This was AKs first time being inside the OR when they put her under, we talked about it for a bit.. He didn't like what he saw, as a daddy, there are just a lot of parts of this medical process with Annabelle that he would prefer he never sees or knows about. The OR is intimidating, without a doubt, for parents as much as it is for the kids. I'm just grateful Annabelle has us both to balance the emotions of what she's going thru. I am much more medically aware and engaged, a fighting advocate for each and every decision and daddy is her hero that brings a bit of home to the hospital and makes her laugh and forget everything she's going thru. We wear two very different hats in how we provide her medical care and how we parent our kiddos, and I couldn't ask for a better co-pilot on this adventure.
....enough of that sappy stuff..

About 45m later, we were called for a consultation, where they take you into this tiny room between the OR and waiting room and our nurse (Eosinophilic Esophaghitis specialist/ Putnams right hand man, err, lady) briefs you on what went on, updates her notes from us and we wait in silence until Putnam joins with pictures and an update on what he saw visually. She looks good from a visual standpoint, we need to wait for biopsies and he stressed that we need to have some conversations during our clinic visit on Thursday. We agreed, took our paperwork and went back to the waiting room where we wait until she's stable in the PACU and they call us to go see her. 

.. .. .. Almost an hour later, I was covered in hives and wanted to vomit from nerves. She has never ever taken this long to wake up and them call us. Every worst case scenario was running thru my head and I just knew she was screaming hysterically in disoriented fear and I wasn't there (that's how she comes out of anesthesia 80% of the time). I demanded the rep at the front desk let me see her and/or speak to the nurse that's back there with her. I couldn't take it any longer. The nurse on the phone said to send us back, I bolted to the PACU, leaving AK in my dust. When I found her, she was still snoozing away, still had a breathing tube and on oxygen, she just didn't want to wake up yet. After about 5min she wiggled a bit so the nurse removed her tubes and set the oxygen to the side as we watched her for another 30min. She seemed to be slowly, very slowly, coming out of it.. But she was scaring the hell out of me. I couldn't touch her, hold her and I can hardly speak to her bc it's essential she wakes on her own and doesn't panic when her body can't wake as quickly as she wants to. We swallowed over our lack of patience and anxiety and watched our baby snooze... For what felt like a year! Finally, they called transportation and allowed her to finish coming out of anesthesia in our own room on the floor. I was relieved, at least if we're leaving PACU, that's a good sign.. 

When we got back to our room, daddy picked Annabelle from her stretcher and carried her back to her bed where we made her comfortable again. This little bit of movement did wake her a little more and soon she was opening her eyes for us. We both exhaled, loudly and smiled at one another. Whew, she's back! 


I've mentioned it before, but anesthesia is one of my biggest fears, for myself, for my husband, for my babies. It isn't often people are put under, but in Annabelle's case, it is often. This was #23, and although I wish it wasn't in the back of my mind, I always think and say "how many times will we be lucky for everything to run smoothly? This may be the last time I see my baby awake and smiling at me, this may be the last time I hear her sweet little voice." Anesthesia is dangerous, there's no doubt about it and all our doctors remind us. We have to get to a point where she isn't going under all the time bc eventually there WILL be consequences to the repeated bouts of anesthesia.. I just wish we were already there. :( 

We were discharged around 530-6pm, just in time to play in downtown Cincinnati traffic during a rainstorm. Annabelle was too tired to notice how long we were in the car.. She was still so groggy, which was probably a good thing. We arrived at Great Wolf Lodge around 7p and revealed her big surprise :) she was pleased, but couldn't grasp the amount of fun these few days would bring. The last time we bright Annabelle to Great Wolf, she was so sick and weak, we thought we were losing her.. Hospice was called a month later. She doesn't remember that trip at all, she never really got in the water, she just cried occasionally and slept 90% of the time. Here are some pics from that trip:





Mady remembers the trip though and remembers how much fun it was.. When she finds out where we took Annabelle, she's going to be FURIOUS! Lol

We didn't do anything fun open arrival, we had dinner where Annabelle couldn't eat much and then sat for story time, but she asked to leave within 5 min of the story beginning because she wanted to go to bed. 

Tuesday she did play for a bit, but she is still incredibly weak. I can't gauge whether it's all because she couldn't eat for two days and then underwent another surgery or if she's tired because of all the running and swimming thru the water park. Nonetheless, she could only play for about an hour and a half and then couldn't walk or run much any longer and needed rest and some sleep. Her cough is getting pretty out of hand too so we're keeping a close eye on that.

No appointments Tuesday. Wednesday we report at a satellite location for a sleep study.. and based on how much we are wearing Annabelle out playing, I don't foresee any issues sleeping on the only night she DOESN'T need to sleep like a log. lol 


















Sunday, April 10, 2016

Divide and conquer VA to Ohio

Yesterday was nothing less than exhausting for the Bishop home. We had opening day at the baseball field, tball pictures, tball game, soccer pictures and a soccer game. All the while it decided to snow in VA making the day miserable for all of us outside all day. Between our games and pictures, we managed to finish packing the bags and our car so we could hit the road as soon as Annabelle's first tball game was over! 



I rode in the backseat with belle for the first couple hours, we watched The Sandlot and ate snacks while daddy drove. She asked often why we HAD to go to Cincinnati and we answered her honestly. She wasn't confused on this trip, shes remembering our hospital visits much better each and every visit, but she still has anxiety about them. Her biggest fear are getting pokes. She pleaded for us to not have to make her get any pokes, or perhaps for us to ask the doctor for some sleepy medicine so she could go to sleep while they do the pokes (how clever! That sure would be nice, heck I would sign up for that myself!)



Annabelle fell asleep in the car around 9p and by 1030p we decided it wasn't safe to drive much longer. The temperatures were below freezing and we were driving in and out of snow storms as we wrapped around the mountains of West Virginia and Kentucky. We were both exhausted so we stopped shortly past Charleston, WV to get some sleep. 


We got back on the road by 7a and were Cincinnati bound. Annabelle continued to ask and negotiate about going to the hospital, and we continued to answer her questions honestly but provide excitement about the trip, "we also get to pick out your wheely chair while we're here this time! AND mommy and daddy have a big surprise for you after your surgery tomorrow!" She was pleased, but still so anxious and disappointed. Watching a broken 4 year old process the fact she's being forced to a hospital for painful procedures is something a parent should never watch across their child's face. It kills me...... I always have to look away..... There's nothing I can do about it either...


We arrived at the hospital on time and were admitted quickly. Our room was personalized for Annabelle and we met so many familiar faces on the GI Surgical Floor. It's like we're 'home' again. 



Before we knew it, it was time for the dreaded poke. Everything leading up to it ignites her anxiety.. Getting undressed, taking off her own clothes, putting on a gown, sitting in the hospital bed, child life and all their distractions - every level of detail is another element that brings her closer to that needle and she knew it. 



I asked for an IV team to help with the stick. Not because we didn't trust our nurse, but because Annabelle's arms are building so much scar tissue that were having to stick her 2-3x each time we attempt labs or an IV. If I can subside just an ounce of her anxiety and fears from the pokes, I will take it. They brought in the queen of IVs and she is accompanied by her ultrasound machine that helps her place the IV. It was super cool. They scrubbed Annabelle's arm, and while child life distracted her with pictures and stickers, the nurses watched her veins on ultrasound and incognito made the stick. The moment Annabelle moaned ouch, we pointed her attention to the ultrasound machine and she smiled Bc she could see what was happening. 



She didn't have one tear. Not a drop. She didn't cry or once complain. In fact, when the nurses left, she told us it was the best day EVER Bc it was the first time the poke didn't hurt! I could kiss the IV nurse for what she did for Annabelle. Relieving her from this stress and anxiety was every bit of my prayer for today and she made it happen. 

Once the IV was placed, it was time to begin running the meds to flush her GI system. Unfortunately though, the nurses couldn't get their feeding pumps to work. We tried using our own extension sets (tubing) and finally after two hours and them trying all her equipment and supplies, I offered for us to just use our own equipment and supply. They agreed. (I really feel like I should be getting a credit on our bill for this) 


The evening has been smooth. Annabelle made a trip to the playroom to paint a few pictures, we did a puzzle, the second was a different puzzle than the box it came in and frustrated the ever-living out of her so we gave up ;) we watched Inside Out a few times and before we knew it bedtime was here. 

At present, we've had two blowouts equivalent to that of an atomic explosion. I look forward to the rest of the night following suit.. If she continues to move stool at this rate, fingers crossed that we won't spend the entire night doing painful rectal irrigations. 


Sweet dreams world

























Monday, April 4, 2016

Richmond preparations for Cincinnati

We're finally in the process of crossing T's and dotting I's for our upcoming trip. Annabelle is aware that were traveling soon and Madelynne knows that she will be staying behind because she has school. The anticipation is growing, but so are our frustrations with Annabelle's health, so we are all very much looking forward to this visit.


I mentioned before that scheduling this time, was extremely difficult. There was a lot of strategic planning that took place to get the appointments down that we needed. I am still waiting on a date confirmation for the Wheelchair Clinic (they're accommodating us individually after-hours because we couldn't get in while they're available). The only other appointment I couldn't manage to figure out was the Gastric Emptying Study.


This procedure needed to be performed enough in advance to have the results before we scope and do surgery. We know something is terribly wrong with Annabelle's GI system, but we don't know where the problem lies, the Gastric Emptying Study will allow us to see how the food she eats, moves thru her GI system, how quickly, efficiently and if there are any pauses/issues/obstructions/blockages etc along the way. If we can pinpoint where an issue is in her GI system, we can take a closer look around the area when the doctor performs the surgery and scope in Cincinnati. With the help of our team in Cincinnati, we were able to schedule the scope in Richmond last Friday at 9am.

Gastric Emptying Study
We arrived at the hospital around 845a, cranky but excited. She needed her formula but wasn't allowed to have anything before the test, she was hungry and nervous but hid it well. On the way to the hospital, we sang songs and I asked if she was alright or wanted to talk about anything, her only question was "Will there be any pokes today?" I couldn't guarantee there wouldn't, but told her that I was almost sure we would not have any pokes.. she seemed satisfied with that answer.



Once we were checked in and bracelets on, they escorted us to our room in Nuclear Medicine where they explained the procedure. Annabelle would have 10min to eat the scrambled eggs that are impregnated with radioactive dye, after that they will do a scan of her stomach. From there, we would do another 2 1/2 min scan every hour on the hour, for 4 hours. Once everything was explained, our nurse asked the routine questions, "Why are you having the study? What concerns do you have? How do you spell that? Can you spell it slower? E-O-S-I-N-O-P-H-I.......... Who ordered this test? And finally, do you have any questions? I did. #1: I need the final report, in hand, when I leave today to take with me to Cincinnati. #2: Annabelle has been allergic to eggs all her life and just recently tested negative to them. She's never had eggs before, so do you have a bottle of benadryl near by? This is the moment his eyes turned into quarters and he darted out of the room.

Over the next 30min, every physician and nurse was consulted and every conversation to talk us out of having the test was discussed. I repeated, "Her doctors know her allergy history, he knows she's never had eggs and he's ordered the test!" They would ask over and over, "Alright mom, what do you want to do today?" Me: "GIVE HER THE DARN EGGS! Don't you have an action plan for an emergency?!" They explained, "We only have Benadryl in our crash cart, we don't have it on hand. If something were to happen we would have to use the crash cart and call a code.." "Well Ok! That's fine. That's your plan. If she begins having a reaction, we'll just call a code. Now bring us the dang eggs so we can get started." They handed me the panic call button and everyone watched her cautiously as she ate. She did a great job and devoured them within our 10min.



Once the eggs were finished, she washed her hands and we were off for our first scan. Everything was painless, no pokes, the machine wasn't loud and nothing was truly intimidating.

 





Annabelle did such a wonderful job. The hardest part of the day was finding distractions between each hours exam. We toured the new VCU Children's Hospital (not impressed), spent some time outside, walked the halls, visited nenaw (my mom), and watched movies on my phone. The last couple hours of the 6 we were there were the hardest, but we survived. Her pain started around hour 3 after eating the eggs, they documented everything and continued the test. By the time we were finished, I could tell Annabelle was getting increasingly more weak and started scaring me. She hadn't been fed in almost 15 hours, and that is entirely too long for her body. During the chaos of the morning, I forgot to bring her feeding supplies and formula with me so I could hook her up after the last scan, so as soon as we were finished I had to leave. I signed a waiver for my mom to pickup the final report that afternoon, and Annabelle jetted home for food and a nap!

She did well that evening, but late that night she began retching (trying to vomit), Saturday did the same and by Saturday night the diarrhea began. If you ask Annabelle, she isn't pleased with the egg experience. She's quite miserable really.

Auto-Immune Skin Rash
Another curve ball Annabelle has thrown our way, are these tiny bumps that she has all over her body. It started out as one bump, on her knee, that honestly just looked like a wart.. and then it spread.. across her knee, up her legs, and is now on her chest, neck, face and eye lids. Ive shown this to our doctors in Cincinnati before (at the time it wasn't nearly as bad as it is now, bc it's spreading so quickly). The more it spread, the less I wanted to wait until we get back to Ohio, especially after seeing it was moving towards her eyes etc. I took her to the doctor and was told its an auto-immune virus, and typically never spreads this rapidly, but because she has an auto-immune disease and pretty crappy immune system in general - were left with a case of bumps spreading like wild-fire. I picked up the prescription last night, it comes in a few tiny packets, smaller than a sugar packet, and it cost $78. Yay for great healthcare (insert sarcasm). So let's hope this magic cream works, and quickly!





SO! Besides getting everything scheduled and on the books for Cincinnati, we are focusing on just keeping a close eye on how Belle is doing and praying time moves quickly so we can get her comfort soon. Besides the eggs, she's complaining of pain on a daily basis, she isn't resting well at all any more and is becoming so clingy because she doesn't want anyone to leave her. She does still run and play when she's feeling well.. so by all means, we are not at our worst, we just know that she's heading downhill and we want to move quickly.


Annabelle's a tough cookie and is looking forward to this next trip. I think she's secretly looking forward to the time alone with mommy and daddy ;) She will miss her sister dearly, but the time alone is always exciting! We plan to leave Saturday afternoon. AK is head coach for Annabelle's T-Ball team and they have their first game at 3pm Saturday. As soon as the game is over, we are hitting the road. The goal is to make it to Kentucky late Saturday night, stop for a late dinner and hotel and then hit the road Sunday morning in time for admitting to the hospital at 10am.

Let's get the prayers started now!