Day 1 - Admitted for surgery prep

The morning began with a sluggish family that could have used about 5 more hours of sleep. We had to be in the hospital by 10:30a so we took our time around the hotel, ate breakfast, showered, packed and then finally we told Annabelle where we were going and why. It went over well.... not.

The hospital staff, as always, are so sweet and kind from the moment you walk into the hospital. Registration took a while but the kids played and watched the movies they had playing. We all got our pictures taken and ID, Annabelle got her fancy bracelet and before we knew it we were being escorted to Concourse A - 4th Floor, South wing in room 445. Our escort asked the girls to push the button for the 4th floor, when they did she whispered "Have you ever pressed the button with the bell?" Their faces lit up in shock, she told them to press it really quick. You would have thought she double-dog dared them to do something so extreme. They pressed it and the belly giggles didn't end until we got to our room.

Very quickly our nurses greeted us, they talked a bit to the girls, immediately notified child life for both girls and they brought crafts to do in the room. We discussed game plans and our history with these procedures. Before we knew it, it was time for Annabelle's dreaded moment, time to start an IV so we could begin fluids for an hour prior to starting the Golytely (Annabelle dehydrates and her levels become too off balanced for us to do these procedures at home, it's entirely too dangerous and although she's showing us she can go longer without food and simple IV fluids, we still find her unable to walk, maintain coordination or even speak clearly after a matter of hours without Elecare.

Mady could sense Annabelle becoming nervous and she moved towards her bedside. Annabelle choose where she wanted the IV placed, on her left  hand (which truly is the best place anyway). The nurse looked for quite a while and Annabelle moaned, she laid on her back and never considered pulling away. She stared at us and pleaded not to until I told her "I am sorry sweety, they have to put the IV in and we cannot leave" I think it was that moment where she surrendered herself for the rest of the day. Her demeanor changed, her head dropped and she recognized she has lost the battle and she has no control. Thats the moment I think I also surrendered, my heart has been broken since before we left VA and I don't think I'll get it back until we get home. Annabelle wanted to hold my hand but she wouldn't look at me. Mady wanted to hold her sissy's hand and Annabelle watched her sissy, between watching the nurses she would trace the room at everyone around her bedside that was making her do this but I think the only person she found trust in was her sissy.

The nurse attempted the first stick, and completely missed. She went for a vein mid way up her forearm that I couldn't understand. She missed, dug for a bit until the other nurse finally said "That's enough, try again". That's one of the most frustrating parts of IVs.. Annabelle's already screamed, she's been so brave, never pulled away, didn't have ANYONE holding her down or still, and then once the ouchy was over, she looks at me and said "Was I brave mama?" I told her "Yes baby, but we have to do it again...." Oh my god, her face is awful. The shudder breaths and sadness across her face is heartbreaking. She once again held still, she cried less the second time as they successfully placed it in her hand.

Soon after, the girls watched a movie while we talked with doctors and nurses some more. I supplied them with extensions and tube supplies because apparently they don't have the supply for the type of G-tube we use. We began a heavy feed of golytely thru her tube around noon and I immediately asked for Zofran via IV. Belle gets nauseaus with fast tube feeds and this type of feed won't end until Monday morning at 6am. While Annabelle rested, I stepped out to take Mady to get lunch. We ate in the cafeteria and on the way back she saw another little girl with a balloon, "Mommy, I think I know what will make Annabelle happy, a balloon!" How can you say no to that? We went to the gift shop and she thumbed thru the entire book until she found the perfect one.. it had butterflies and lost of Belle's favorite colors. Bingo! She was so proud of herself as was I. On the way up to our room (which is quite a walk, the hospital is huge), Mady wanted to talk about all the kids she saw in the halls, and how some of them looked really really sick, she wanted to know if kids ever die in this hospital, if any are sick just like her sister and if everyone had their families with them. Boy that was a hard conversation!!

From 2-4pm the girls were able to go to the playroom on our wing of the hospital. The playroom was great, they had fun music, floods of entertainment and toys, crafts and games. We spent the entire 2 hours in there. The anesthesiologist paid Annabelle a visit in the playroom, him and I stepped outside and talked over our game plan for about 10min. He apparently spent time in Richmond studying and working at VCU before settling in Cincinnati Children's, he said he was considering moving to VA for VCU and I winked and pleaded he stay here.. there was a reason we are here and not 15min from our home.

A few minutes before we packed to leave the playroom, we got a call that our doctor wanted to see us in our room. We packed up and went upstairs, Dr. Putnam, Annabelle's doctor was waiting by her door. He is truly the best doctor, we spent about 25min just talking, some about Annabelle, some about Cincinnati, he pointed out some great places to check out, another great hotel suggestion etc. Before he left he assured us "I am happy Annabelle looks well right now, but this is still normal for any child, the way she looks, behaves etc. we are grateful she isn't suffering as much as she once was, but she still is not ok. We will figure things out.. I'll see you tomorrow".

He walked out the room, and just like the other times we have met with him, a smile ripped across my face. Dr. Putnam may be the only doctor in this world that understands children with this disease. He understands us as parents, he understands it all and all its complexities.

Mady and daddy left shortly before dinner so they could get something to eat. I ordered Annabelle some chicken broth for her last meal until Monday night, she loved it surprisingly. By 7pm our nurse came in and informed me that Annabelle wasn't progressing well, and I agreed. It seems she cannot have a BM on her own much at all anymore. And even after 7hrs of meds, she still wasn't able to go much. Annabelle was getting sleepy and asked that I turn the TV off (I was SO grateful, we've already seen Frozen 4x by then!)  It didn't take her much time at all to fall asleep, I sat beside her with my head down and prayed. I prayed with everything I had that the night wouldn't be painful for her and that things would begin to progress on their own without intervention.

930pm the nurse came in with all the supplies to begin the process of Rectal Irrigations - thats when the night began. Annabelle got about an hour and half of sleep before she was woken in the most abrupt painful way ever. The irrigation itself takes about 15min as I hold her still while she screams and fights. We repeated that process about every hour / hour and a half until 730a this morning. Needless to say, no one has really slept, her hiney is raw to the point she is scared to pee, she can hardly roll over in bed or sit without crying. She is miserable.

Today she is NPO, she cannot have anything to eat or drink and she is begging every 30 seconds to GO. HOME. NOW! PLEASSEEEEEE!!!! I am praying some miracle happens and they move her O.R. time up from the scheduled 2:46 pm it is now. We just need to get thru this day, get Annabelle to 2:15pm and make it thru the surgery without issue.