We hoped we would never have to write on one of these web pages but given the rollercoaster we have all been on, we felt this would be the best way to communicate with everyone that knows and loves our mother.
So where do we start? That is tough because we are not sure when the problem started but we will do our best.
Mom had not been feeling well and was fighting what was thought to be a stomach issue. On April 1st she reached out to Brian to let him know she hadn't been feeling well for a few days. She wasn't sure she was going to make the menu tasting for the wedding the following Thursday. This was something she was looking forward to, so she was adamant that we did not postpone for her and she would make sure our dad went. No big deal right? We didn’t think so either, everyone gets sick from time to time but what happened next is the ride we have all been on. After talking to Brian, she proceeded to go to the basement to watch the NCAA women’s championship game. As you all know, she had grown to be a big Iowa State fan after both Kristina and I attended. While watching the game, and into the night, she started to vomit and it wouldn’t stop. Dad called the primary care doctor and they advised to bring her in for an IV to make sure she didn’t get dehydrated. The vomiting wouldn’t stop, so the primary care physician suggested she be transported in by rescue unit. Once at Mercy, some testing was done and the diagnosis was an aneurysm causing a small stroke.
Day 1 in the Neuro ICU and Surgery Number 1 This was a scary day for everyone. Lots of speculation about the future and severity of what was going on. This was going to be a hard day, but many family members and friends were there supporting our mother. After meeting with the neurosurgeon, the plan was to attempt to put in a coil. We knew this was risky and had only a slight chance of success. Unfortunately, the coil surgery was not successful, so a new solution was needed. It was decided to put in a stent, but due to the difficult size and location of the aneurysm, special equipment was being shipped in. Now the dreaded “hurry up and wait”.
Day 2 Surgery Number 2 The second day was tense, but promising. We were all hoping the stent surgery would be a success and mom would be on the road to recovery. She was conscious before surgery and was enjoying her time visiting with her friends and family. Everyone gathered in the waiting area, hoping and praying everything would go well. On her way to surgery, mom made sure to wave to everyone. Surgery was a success. Great news and some relief for everyone. She was being placed on an antiplatelet med to help keep the stent open. She also had a temporary drain put in to help with the removal of the blood from the aneurysm. Mom woke up and was a little groggy, but things were looking good.
The next couple of days looked promising. She was remembering why she was in the hospital and what happened to her. She was joking with the nursing staff, conversing with friends/family and looking forward to getting out of the hospital. As the next days passed, her breathing started to speed up, becoming faster, each day. Conversations with her friends and family became more difficult for her.
April 9th The Dreaded Intubation Breathing had turned into work for mom. The only option was to give her sedation and intubate her. This was a needed step to figure out why her breathing rate was so fast. Again, another scary day. There wasn't any clear reason as to why this was happening.
Another day had passed. After discussion and testing, is was discovered she was suffering from acidosis causing a metabolic imbalance. At this time, this was thought to be causing the breathing issue. Doctors advised it could take a few days to clear up. This was a relief for us and helped us understand why her breathing had changed so drastically after surgery.
A few days passed, and the stomach and intestine starting working again. Unfortunately, her body began retaining an excess amount of fluid. This was problematic given the only way to help was to remove the fluid. The challenge with this was, if too much fluid was removed it could cause issues with the stent. She was also started on a round of antibiotics to treat fluid building on the lungs. There were some rough days in here and the vent settings were elevated. CT scans and x-rays were being taken on a regular basis to monitor changes. Images of the abdomen were improving and the decision was made to remove sedation and start to wake her up.
The Unknown Sedation was removed Monday, April 15th, but the response was not positive and her blood pressure dropped too much, so she was put back on sedation to stabilize her. The plan was now to wean her off sedation and it was cut in half. Tuesday morning, sedation was removed again. There wasn’t a blood pressure drop, so this was good news and we were being advised she should start to wake up. We were told that this process could take a little bit as the sedation she was on was strong and she was on it for an extended period of time. Ventilator settings remained high at this point. Nothing was happening, and we were are all starting to get worried. She was non-responsive to physical and light stimulus. We have all been in limbo the past couple of days with really no explanation or inclination as to why this was happening. With the information we were getting, we were prepared for the worst, but still praying for the best. The doctors have informed us that she is unable to sustain breathing on her own and even though the vent settings have decreased some, she still needs a vent to survive right now. However, staying intubated for an extended period of time is not an option either, so a tracheotomy has been suggested. The drain in her head also needs to be removed, so the longer term option for this is a shunt. For a 3rd variable, there will also need to be a longer term option for the feeding tube, so a peg would need to be put in. These procedures present other dangers for patients in mom’s condition due to the medication she is on for the stent. The family and the doctors did not want to put her through any excessive procedures if irreversible damage had been done. An MRI was done to see if there was any unknown damage, but again nothing showed that they weren't already aware of. So the mystery continues. We had an extensive meeting with her surgeon and after discussing options, we are moving forward with the tracheotomy, shunt, and peg provided nothing changes.
We are doing this in the hopes she will wake up. We want to give her every chance to fight, but always be mindful of her wishes and quality of life. This is a hard time for everybody and we will try to keep the updates coming.