I know everything happens for a reason, but sometimes I really wish I knew what that reason was.
This week has been so very hard for my family, in more than only Annabelle's surgery. In a sad way, it was a blessing to have the strongest members of our family together yesterday. We were all together for Annabelle, but we sat next to one another in front of St. Mary's Chapel, and there couldn't have been a better place for us all to be that morning during this tough time. Please, say a prayer for all of us, an open prayer for my families strength as we climb a huge mountain of pain.
The morning began in Pre-Op where Annabelle was unusually happy and full of herself. She was in a great mood, energetic and laughing as she played tag with herself around the waiting room at 6am. Nurses were in and out, AK navigated Annabelle and I conquered all the same repetitive questions. First admitting, then the Pre-op nurse.. Anesthesiologist.. nurse anesthesist.. OR nurse.. another OR nurse.. Surgeon.. his team-mate.. etc etc etc. Then there were the lovely nurses who came by to chat just because they thought Annabelle was the cutest thing to see bright and early in the morning (I have to agree), they asked questions and I continued answering them all the same. "When was her last seizure? What are her allergies? Is she on any medications? Which doctors does she see? What is her diagnosis? Why is she on this diet? ..... ughhhh shoot me."
A nurse joined our room because Annabelle's case caught her curiosity. Her grand-daughter is also a mystery diagnosis and her heart immediately melted when I told her "We can't find a definite diagnosis yet.." She said to me "Oh hunny, that's the hardest thing for a mother.. the medical world is cruel and cold when you cannot find answers for your baby" My jaw fell to the floor and I thought this woman was myself speaking those words! Her and I spoke for a few minutes and she stopped me mid sentence, "Let's pray", I smiled and agreed. She kneeled on the floor and took Annabelle into her arms and held her, she prayed and AK and I knelt down to the floor beside and we all bowed our heads. At the very end, I peeked my eyes at Annabelle and to my surprise, she was deep into prayer with this wonderful nurse, Annabelle had her little brow scrunched and her eyes tightly closed. She wasn't moving or squirming, she was a 2yo listening to the prayer for healing, direction, the right doctors, strength and courage. It was amazing to be part of. Afterwards, we all said Amen and I gave her a huge hug. A few minutes later I handed my daughter over to anesthesia and she was gone. The small waiting room was instantly quiet and still as I could hear Annabelle crying around the corner while they carried her away from me. My stomach sank, and there wasn't anything we could do about it but put one foot in front of the other and follow thru with the day we knew would come.
The morning just wouldn't end. Finally I got a call that the surgery was over and within minutes I was allowed to join Annabelle in the PACU. AK and my family couldn't follow but I didn't blink, I hurried the gentlemen down the hall to usher me to my baby girl.
She was hysterical. I have seen my Annabelle upset before, scared, anxious, fighting mad, and in pain.. but nothing compares to the intense pain she was suffering after this surgery. There were two nurses struggling to hold her down as she was screaming and fighting with all her might to pull the tube out of her tummy. She was like a furious octopus! I pulled the hospital blanket off her and wrapped her immediately into her own 'gigi' (blanket) and picked her out of the nurses arms. They continued giving her pain meds but nothing seemed to be calming her down. At some point her surgeon was paged and he joined our area in the PACU and assessed Belle, he immediately ordered something stronger and once it was administered, she was out. She would occassionally wake back up for a moment to scream and tug at the tube, but she would quickly wimper her way back to sleep.
Dr. Lanning (surgeon), explained how the procedures went in the OR. He discovered once he was inside and scoping her abdominal cavity, that Annabelle actually had a Hiatal Hernia that was the cause for the persistent reflux that has gotten worse over the last 6mon vs better like we would expect. The hernia blocked the diaphram, esophageal sphincter and flap to close her tummy from being able to function properly. Dr. Lanning made the repairs addressing the hernia and then proceeded to do the Nissen, he said the hernia had caused such damage in that area to her esophagus and stomach that it couldn't possibly heal on it's own or ever function properly. For this, I am so grateful to have Dr. Lanning doing this procedure and proactively addressing Annabelle's 'reflux' concerns. He was two steps ahead of us and I didn't even know it. The rest of the surgery went well and the G-Tube was placed after her stomach was secured in it's new position.
It was quite an intense roller coaster while in the PACU, between the discussion with Dr. Lanning and managing Annabelle in my arms, I am so, so, so very grateful AK or my family didn't have to see any of it. As a mother, I never want to see my child in that condition again either, but I have seen her struggle more times than I wish to recollect - I have a very good gauge on Annabelle's pain levels and yesterday takes the cake for the wost I have ever seen her.
After an hour in the PACU, we moved to the Pediatric ICU Unit. Moving Annabelle from one bed to another was excruciating but with another dose of pain meds, she was able to relax fairly quickly. She was asleep, whimpering between every breath and moaning when she had the energy, but she was asleep.
The day was spent alternating between Torodol and Morphine every hour and a half.. within minutes of her needing another medication, she was moaning and crying for help. Until 4pm we had a tube to gravity drain liquid contents off her tummy.. of course in the midst of her fighting to pull the tube our from pain during one episode, she knocked the tube over and spilled all the delicious tummy juices in the bed. I don't need to offer details to tell you how nasty that was ;) After 4pm they racked her G-tube to hang above her in the bed to continue allowing fluids and air to release from her belly and stomach. At 8pm we began her feeds, extremely slowly at 12ml x hour.
The afternoon was managed well until late in the evening when air began moving around her tummy. Between the morphine making Annabelle jumpy, which resulted in her crying out in pain - or the air in her stomach, unable to escape making her arch around screaming.. it was quite a difficult several hours for Belle. Soon she was able to sleep and once she was comfortable again, she managed well thru the night with going 6hrs between doses of morphine vs every 3hr.
4am began the next series of pain episodes and these lasted much longer but didn't appear nearly as intense. At one point, while I sat wide-eyed at 4am watching the traffic on the roads, my heart stopped as Annabelle sat straight up in the bed. I moved like a silent ninja as fast as I could out of my blanket and chair just in time for her to realize what she had done and the pain to hit her.. that was all she wrote. I hit the panic button at lightening speed and together a nurse and I calmed Belle down and held her down until she stopped trying to pull the tube out of her tummy. 7am she was finally comfortable once again and she remained awake for quite a while.. albeit silent and monotone while watching the ceiling, but she was awake. Shortly before noon she actually spoke! It was so refreshing to see my little girl coming back to me.
We had a wonderful friend visit who has navigated this G-tube journey already - her little boy was so amazing and cautious when "playing" with Annabelle. They showed each other their matching tubies in their tummy and he called her is "Tubie Buddy", I melted.
The day is complete chaos and I haven't slept more than a broken hour total.
I have made more phone calls, arrangements, pulled so much hair from my head and forced a fake smile across my face for my daughter, it isn't funny. I am a southern sweetheart thru gritted teeth at many things I disagree with in his hospital, but overall, things are well. Annabelle is tolerating her feeds, they're still being administered extremely slowly but it appears she's taking them in.. while being vented of course. She cannot roll over, pick her legs up or sit up yet of course, she can hardly lay in a reclined position. But she is managing her pain more comfortably without morphine, so that's a good sign. She is still very crampy, there is a LOT of air leaving her tummy thru the tube but it's making her nauseated. I just asked for another round of Torodol and that immediately made the nausea worse. We started Zofran thru her IV in hopes she will be able to get some rest very very soon.