Friday, July 29, 2016

The Longest Day

I decided I'd like to write up the events of Connor's stay in the hospital so we have a written record. Here we go....

On Saturday July 23rd, Lauren and I spent the morning with Terry, Becky and Paige at the shooting range, and left the kids home with a babysitter. We were told on the way home that Connor had been grouchy, so he was put down for a nap, and he woke up shortly after we all got home.

Connor played with dad and seemed happy as could be, when out of nowhere he threw up on our couch. We immediately started to bathe him and get him ready for a few days of sickness (Claire had the same symptoms earlier that week). He ended up throwing up twice on Saturday, so we stayed home from church. As Sunday progressed, Connor got more and more discontent to the point that he was either crying or sleeping. We were able to get him to eat and drink a little, but he threw up most of what he ate. 

Monday came around and Connor was acting the same, but perhaps a bit more agitated. He was sleeping a lot, and was generally hysterical when he was awake. The biggest change on Monday was that Connor had ceased to respond to us when we'd try to talk to him, and he refused to eat, drink or speak to us. I was home (thank goodness) on Monday for a home refinance (which never ended up happening) and I took Claire to grab lunch for all of us while Lauren stayed home to hold Connor and rock him to sleep.

When Claire and I got home, we got food set out to eat, and Lauren brought out Connor. He was struggling to nap, and Lauren felt like she should get him out of bed. We were about to put our first bites of food in our mouths (about 12:30) when Lauren suddenly asked Connor if he was ok. I looked over and Connor's eyes were rolled to the side of his head, his arms were in front of him tensed up, and he appeared to be repeatedly twitching. Lauren quickly suggested that he was having a seizure, and I agreed. I quickly called 911, and while Lauren tried to help Connor through the approximately 2 minute seizure, I was on the phone with dispatch to help as much as I could.

The paramedics arrived about 5 minutes after we called. They brought 2 fire trucks, a fire marshal truck, an ambulance and a police escort. Lauren and I went outside to meet the paramedics, and they quickly ushered Lauren into the ambulance. I stayed outside with Claire. I don't know exactly what happened inside the ambulance, but after a few minutes they told me that they were heading to Primary Children's Hospital in SLC and that they needed Lauren's purse, phone and Connor's car seat. I ran the items out and gave Lauren and Connor hugs and kisses to send them on their way. My neighbor Steve McAllister came over to see what was going on and ask if I needed anything, and suggested we give Connor a blessing. We got some oil from the police officer on hand and went into the ambulance to give Connor a quick blessing while the paramedics were strapping Connor's car seat into the gurney. I can't thank Steve enough for being in the right place at the right time to help. He really was one of our many angels that day.

I went inside to get Claire ready to head to the hospital and broke down into tears from being so scared at what was happening. Poor Claire became quite frightened and was asking me what was wrong. It was difficult to explain to her what was happening while trying to not scare her. I then called family to alert them to what happened. Terry, Becky and Paige were in Seattle, but everybody else was close by. As Claire and I packed up to head to the hospital, I thankfully saw Connor's favorite Mr. Owl on my way out. Seeing the owl was a definite tender mercy in the chaos as is was Connor's main source of comfort (besides Lauren) during his hospital stay.

On the way to the hospital Connor continued to have multiple more seizures. These ones were different where Connor would zone out and stare into space for about 15 seconds, and then suddenly snap back to reality and start crying. Connor arrived at the hospital around 1:30, and once at the hospital, Connor had about 3 more seizures that were similar to the very first seizure. The ER doctors gave Connor some fast acting emergency medicine which had a major sedating effect on Connor.

Claire and I arrived about 30 minutes after Connor and Lauren, and we went to the room where Connor was located. I was there to see 2 of the seizures that Connor had. Nothing is worse than seeing your child go through that. Poor Connor was exhausted from the seizures, and from the emergency medications. Throughout the entire process, the doctors in the ER were testing Connor for every possible cause of the seizures. The list included:

Checking blood sugar levels for diabetes
Checking blood samples for metabolic disorders, specifically ones that would cause electrolyte imbalances
A nasal swab for respiratory illnesses such as RSV
Looking for signs of concussions
A spinal tap to look for signs of Meningitis

As the poking and prodding became more and more invasive, we quickly started to realize that our initial assumption of dehydration from his sickness was not the answer we were hoping for. The ER Nurse Practitioner informed us that the was going to admit Connor to the hospital and that an EEG would be ordered to watch his brain activity. Scott also came and got Claire and took her to his house and then to Tyler and Amy's house for the night.

At about 5:30 we finally were settled into our new room, and had to go through the process of hooking up the 25 electrodes to Connor's head for the EEG while he thrashed about. Finally, after the EEG was running, Connor fell into a deep sleep. So deep that doctors shining lights into his eyes didn't even wake him. Our neurology tech told us that the EEG would only be running for 40 minutes, and after 2 and 3 hours passed, we asked why it was still on, and were informed that the EEG would be on for closer to 12 hours.

Soon Scott, Heather, Landon and Susie arrived to bring us food, clothes and toiletries and to visit Connor. Shortly after that, Matt and Jess arrived after driving the 90 minutes from Logan. I could tell that everybody struggled a bit to see Connor looking like he did, and it was no easier on Lauren and I. The boys present helped me give Lauren a blessing of comfort, and afterwards, I asked Scott to give me one as well. The blessing made me cry, as did many other things that day, but I really felt like the Lord was watching over us and those assisting us that night.

After the Gwilliam folks left, Matt and Jess were preparing to leave when Connor woke for the first time in this wing of the hospital. He was delirious from all of the medications he had received that day, and was trying to sit up, but wasn't able to do so. He began to roll around which cause problems with the many monitors attached to him (EEG, heart rate, respiration rate, O2 monitor). This went on for about 90 minutes with him occasionally resting and appearing to fall asleep, only to awake again and hysterically scream. This same thing happened another 1 or 2 times during the night, leading to Lauren and I sleeping for only a couple hours at most.

At 3:30 AM however, things started to change. Connor sat up on his own and said "Mama". He spoke to us for the first time in over a day. While he was still largely inconsolable and was fairly delirious, it was the first real sign of progress from him that we saw. A true tender mercy. Lauren was able to pick him up (he wouldn't let us during the night) and he fell asleep on her lap and she was able to get a little bit of sleep.

We all really woke up for the day around 6 AM. Connor was furious that he wasn't able to move more than a few feet from the EEG and IV machines, and to make matters worse, the had twisted the lines together which gave us even less movement. He was basically restricted to his bed and to our arms in a rocking chair. To make matters worse, he would only allow Lauren to hold him which caused a lot of exhaustion to Lauren. 

At some point in the morning we finally got Connor to eat and drink water by giving him fruit snacks. It was the first he has really eaten in over a day. A while later, a resident neurology doctor came to speak to us and informed us that a CT scan might take place, and that since he had eaten, it may have to wait until the next day. My heart sank to think of him cooped up like he was for another day. We were instructed to cease feeding him in case they could do the exam today. He also informed us that during the night, no new seizures were detected, which meant that Connor had seemed to react well to a newer medicine, Keppra. The unfortunate side effect is anger, which an already agitated Connor didn't need.

The resident left around 9AM and informed us that sometime between 9AM and 12PM the entire neurology team would do rounds and speak to us about the plans for Connor. We waited until around 11:30 for the neuro team to finally show up. They informed us that things were looking up. Connor hadn't suffered any more seizures during the night, although his brain was functioning at a slower than expected rate, which they attributed to a side effect of the seizures and drugs. They said that we could soon have the EEG removed, and that we could go home that day, instead of having to stay longer. They also said that rather than a CT scan, and MRI would be ordered for a couple weeks in the future, with a neurology appointment for a month from discharge.

While the neurology team didn't have any specific answers, they felt as though they could narrow it down to a couple possibilities. The most likely is Epilepsy, and since Connor reacted well to the Epilepsy medication, they decided to write the prescription for him to try and stay on top of possible future seizures. They felt that given his severe episode of seizures, that medication would be better until more work can be done at a later time. Normally an Epilepsy diagnosis requires 2 events similar to what Connor experienced, so they weren't willing to give that as an official diagnosis.

Soon after that, the pediatric team arrived and said they would be in charge of discharging Connor and giving us an action plan for if Connor has more seizures. They wanted to see Connor eat and drink before he left the hospital, and they wanted him to act more like himself.

Connor was so outrageously tired, and he was struggling to sleep, as he rarely sleeps in our arms. We finally got him to sleep when a knock came for nurses to check vitals. This started a multi-hour stream of nurses, doctors and social workers to speak to us, all which kept Connor awake. Finally we got Connor to sleep again when a neurology technician came to remove his EEG. It unfortunately woke him up as they pulled the electrodes from his head which were attached with a wax-like substance.

After the EEG was removed, he was finally free of machines (the IV was removed earlier). We got permission to take Connor on a walk through the halls since he had been begging all morning to leave the room. We hoped that he would fall asleep, but he didn't. We took him back to the room and played soothing music on the TV and finally got him to sleep.

This seemed to start yet another stream of gifts and food ordered to our room by others. Luckily Connor never woke up, and the gifts were all perfect for Connor. Susie (who works at Primary Children's) came to visit us a couple times during the day and Scott also paid a visit. After that Tarin, Danny, Caydence and Will came to visit on Will's birthday. Thanks to all who visited Connor.

A pediatrician resident came by to give us the seizure plan, which describes the ways to care for Connor if he has future seizures. While Connor was still refusing to eat and drink, the fact that he had been doing so earlier, and that we could bribe drinks by feeding him fruit snacks was enough for the discharge approval. Finally at 3:15 we were given the discharge approval and packed up to leave and grabbed medications from the pharmacy. We were home free! We arrived back at home around 4:45 and when we walked in, Connor immediately asked to watch a show on my computer. I gave him water and cheerios which he immediately began to eat. I then gave him applesauce which he gobbled up. Heather brought Claire back home a few minutes after we arrived and then picked up some Cafe Rio for us. Connor ate black beans and drank a bunch of milk. It seemed that his opposition to food was simply because of his dislike of the hospital room. Finally, we gave Connor a bath, snuggled him a lot, and sent him to bed. He's currently sleeping well.

Ultimately, we're doing well. Better now that we're home. Seeing your child suffer a seizure is perhaps the most frightening thing a parent can endure, but we learned that a seizure generally won't cause long term damage unless it lasts for an extremely long time. We've been given medicine to hopefully avoid future seizures, and some other medication for times when if he suffers an abnormally long seizure, we can hopefully stop it before any damage is done.

This also means that things will have to change for us. We will likely have to spend some time with those close to us to give some of the training we've received in case our family members find Connor unresponsive or seizing. It's a very real possibility that somebody else may have to help us get him through a seizure if he suffers one in the future.

We are grateful for everybody who has helped us through this difficult time. Without our family, we wouldn't have been able to easily find lodging for Claire. Without our family, we wouldn't have had the kind messages, phone calls, gifts and visits that we enjoyed during our stay. We want to thank each of you for your individual contributions to this difficult trial. We were able to see some of the best doctors available and we know that our son is better off for it.

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