First “I can do all things through Christ who strengthens me” Phil 4:13
This has been my go-to verse since Hanna’s journey started last July. The entire 4th chapter speaks to me in so many ways. It talks of hardship, love, service, hope beyond suffering, and reminding us of God’s glory, mercy and grace. Paul reminds us that our life will not always be perfect or as we want it to be. But as a follower of Christ, we should be consistent with the truth of God in Jesus who gave all of himself up in love for others - sacrifice brings glory.
For many who do not know, Hanna had a VP shunt placed on July 29th, 2021 for fluid build up in the ventricles of her brain. Our wonderful neurosurgeon, Dr James Markert at UAB, has been watching her for several years. We had our routine MRI (she has to be sedated for it) at UAB July 20th. He called us later that evening with concerns that her MRI had changed. He was very concerned that a syrinx, which is a fluid-filled neuroglial cavity or cyst, had formed within her spinal cord close to her brain stem. He felt there needed to be a shunt placed asap to relieve the fluid build up which was allowing the syrinx to form.
She went through surgery like the champ she is and we came home. 5 weeks later on Labor Day she began having major headaches that were only relieved with lying down. So we headed back to UAB ER only to be admitted for several days while they tried to figure out what was going on. Dr Markert was able to begin a seizure medication used for headaches. He didn’t want to change anything in the shunt. She still needed the fluid to come down. The medication has been working great for the headaches.
We noticed a few weeks ago she was having some trouble walking at times. We honestly thought it was her medication. But some lethargic episodes started and Thursday (March 3rd) evening I found her asleep at 7:30 in her room (highly unusual) and it took a while to get her up and alert. The scariest part is that her left eye would not track past center and would wonder some. I immediately contacted Markert’s office and was told to head to the UAB ER for evaluation and ultimately admitted.
He suspected her shunt was blocked and felt he needed to revise it and replace it. While In surgery he found a spinal fluid-filled pocket or cyst attached to her drain tube which flows into her stomach cavity. This was blocking her shunt drain line and allowing fluid to build back up into her brain. He was able to replace the shunt but left the drain line coming to the outside of her body until the cyst could be aspirated or at least investigated.
After surgery she was settled in her room and doing well. She had her favorite Chic-Fil-A meal (grilled sandwich on a Gluten free bun with diet lemonade). We were taking a few bites. Then she looked at me and started crying. She then started having trouble breathing and her faced swelled and turn red. The nurses were on it immediately. It was almost like a seizure and anaphylactic episode at the same time. Within a few minutes she was back and started feeling better. Within a few minutes she did it again. This time it didn’t last long. But she knew as soon as it was coming on. This one lasted less time then went away.
Dr came in and felt she was having spasms in her throat where the tube had been. So steroids were started and an anti-seizure med.
Then it came on again. This time it didn’t stop. She quit breathing and a code was called. Doug and I decided to leave the room because the best of the best was in her room immediately and the scene was just to overwhelming. She was intubated and moved to Neuro ICU. To say you start bargaining with God is an understatement. So many things run through your mind. But one thing I know is that I started calling on the Lord to help her. And He did. I never want to experience anything like that again.
She has been stable since Saturday. Her vitals and neuro checks are all good and she has been mostly sedated since Saturday night. The vent has been breathing for her. She recognizes us when she wakes up. And is able to communicate by blinking her eyes and shaking her head. She is a trooper. She has been through so much throughout her 28 years. She keeps handling everything thrown at her. So much better than Doug or I could.
Dr Markert is investigating this whole ordeal. Of course she has stumped him a bit. It’s not consistent with what is typical of this procedure.
Your prayers, texts, calls and surprise visits in the lobby have overwhelmed us and sustained us. All we ask is that you keep praying for Hanna-bug. As you all know she is spoiled rotten and the center of our world.