Then late Saturday night my dad called, we were staying over at the Clarks, and he said that Aunt Sara had called and he rambled on. I couldn't understand what he was saying except to say that he needed to be at the hospital right away and they would leave first thing Sunday morning.
Confused I called Sara to find out what she said to my dad. She told me she had spoken to Aaron's nurse and got the details. She explained it to me, but said she would send out an email to everyone.
Dear family,
I had a candid discussion with Aaron's nurse Jared tonight. We spoke for about 30 minutes and after talking with Liz, we felt it was important to share this update with everyone. Please forward this to family members only- forgive me for not having everyone's addresses.
I wanted to get an idea of how serious Aaron's brain injury was. Something very telling was his status when he arrived to the Emergency Department:
1. They did an assessment called a Glasgow Coma Scale (GCS) on his arrival. The scale ranges from 1 to 15 with 15 being "normal". When grading a brain injury, a score of 12-15 = mild brain injury; 8-12 = moderate brain injury; and less than 8 = severe injury. Aaron's score was a 3- indicating a severe brain injury.
2. The initial Cat Scan showed the depressed skull fracture, swelling, bleeding, and herniation on the left side. Blood in the brain is very irritating and contributes to more swelling which worsens the risk of herniation. Herniation is when the brain has no room to swell so it begins to squeeze out of the hole in the base of the skull. This can be very dangerous. Because of these findings, Aaron was taken in immediately for the surgery.
3. The surgery was to remove any bone fragments, remove any blood, and relieve pressure in the skull from brain swelling. In Aaron's case they even had to shave a small portion of his brain in the left front to accommodate for this swelling. We must remain hopeful that this process was minimal and avoided important cognitive centers in the brain. Overall, this factor is not really our main concern.
4. After surgery there is a fine balance in maintaining a low pressure in the brain. This is called intra-cranial pressure (ICP). This is a number that the nurses will work hard to keep generally below 20. Aaron's was very high initially, but today Jared reported they have been able to keep it between 5 and 15. This is good. To accomplish this they are having to continually drain spinal fluid from his brain. This is a standard treatment and the body does replace this fluid.
5. Also to keep this number low, it is important to avoid stimulation and pain and anything that would cause his blood pressure to rise. This is why for the first week we are asked to be quiet and not move or excite him. In fact he is on a propofol drip which is the "Michael Jackson" drug. It is causes an anesthesia like state. With this medication on board it is challenging to get a truly accurate neurological assessment, but Jared stated today that his GCSwas 12. Which provides hope.
6. Last night Aaron did have changes in his pupils that were concerning as well as some reflex movement called posturing. Meaning this movement was not purposeful in any way, instead indicative of deep involuntary reflexes. This generally means that there has been an increase in swelling or even new bleeding. They did the CT scan and did not find evidence of bleeding only additional swelling. With this, they started him on a different IV fluid designed to pull fluid out from his body. They are also giving a diuretic medication every six hours to keep his fluid status in check.
7. This said, it is important to know that the swelling of the brain after an injury like this peaks in 48-96 hours. We are post-op day 1. We are not out of the woods by any means. These next few days will be critical for Aaron in terms of keeping the pressures down. As a family, we have got to fast and pray hard that by Wednesday we may see the worst over and begin to look ahead.
8. By Wednesday or Thursday, they will begin to lighten the sedation and really be able to assess his neurological status. Only then will we be able to determine the level of disability Aaron will face.
Aaron is being well cared for. The treatments they are using are standard and evidence based. He is in the right hands. Our job now is to stay informed and be present for Aaron, Liz, Michael, Daniel, Emily, Kat, Marilyn, and Tim. I have suggested that we make an effort to ensure a member of the family is present during the day at the hospital, in order to stay informed of Aaron's status from the physicians and nurses coming and going. I would encourage note taking while there and writing down questions that come up. The next 4-5 days are crucial for Aaron, I will say it again- he is still vulnerable to decline.
With love, hope, and faith
Sara
We left the kids with the Clarks and rushed to Provo. Everyone came; Mom, Dad, Kat, Marilyn, Andy, and Tim. It was the first time Katherine and Tim had seen Aaron. They haven't been ready until now.
I'm worried about Tim. He has taken it the hardest. It was always just the two of them. Him and Aaron. We decided that Tim would talk to his school counselors and miss this week of school before the Christmas break.
It was a long day at the hospital. Mostly just taking turns seeing Aaron. We went over to Grandma and Grandpa Forsyth for dinner and to discuss a rotation of who could spend time with Aaron so that for the most part, someone is constantly there. Tensions are high in the family and people are starting to get on each others nerves.
There was no change in Aaron's prognosis. They thought he might be having seizures, but it turned out to be shivering which is basically chills you get from a fever.
Mom has decided to stay at the Ronald McDonald home across the street from the hospital. Its like a hotel for families who have a loved one in the ICU. Even though we have family close by its nice that mom is right across the street and can be with Aaron more often.
Tuesday, December 18 we picked Daniel up at the airport. It was nice to have him home. He wanted to go straight to the hospital. He wasn't as shocked to see Aaron as the rest of us were. I think because he has had more time to soak it in and has seen pictures. Daniel is going to stay with mom at the guest house.
Wednesday, December 19 woke up to a fresh blanket of snow at the hospital. It is a critical day for Aaron. They are hoping to wake him up from the coma and to assess the damage done. However it turned into a disappointing day when Aaron's ICP jumped to high and they had to put him back on the medication. We also heard from the financial guy at the hospital that my parents are reliable for the financing. It was a depressing day. They will try to wake Aaron again tomorrow.
Went bowling that night to have some fun. It did lift our spirits some although we all kind of did bad. Carson had fun, he really likes bowling. We went back to Ogden that night to spend some time with the Clarks, and missed Sara. Aunt Sara came down and according to Marilyn took over the nurses job. Its nice to have Sara here. Mom needed her and she makes us understand the medical terminology better.
Trying to see if we can get Aaron on Medicare. If my parents are responsible for the finances it will crush them. Fingers crossed.
Thursday, December 20 we went to a sealing in the Logan temple. John and Michelle Mickelson (Brad's aunt and uncle) adopted a little boy. It was so comforting to be in the temple and to really understand that families are forever and that families are the most important thing in this life. How appropriate being so close to Christmas.
Saturday, December 22 we held the annual Forsyth Christmas party. It was a big party! So many people came, Bob and his family came down from Jackson, the Hawkins, and most of Phillips family came, Matt, and of course Grandma and Grandpa. It was the first time Uncle Bob has ever come to the Christmas party. It was so nice to have all the family here supporting and loving Aaron.
We had it at the guest house and mom decorated it with all of the decorations she used for the ward Christmas party. It was a Grinch party. We had yummy soups and sandwiches. We did our 12 days of Christmas and played bunco. It was really nice to end our trip with some uplifting family time.
Sunday, December 23 it was time for us to go back to Arizona. Aaron was going to be taken off his medication again today to see if he would wake up. Brad, Daniel, and I arrived at 7 and they had just put Aaron back on the medication. He was off of it for only a half hour before they had to put him back on. While off the nurse said that he didn't open his eyes, obey any commands, and got real agitated. The lung doctor came in shortly after we got there and wanted to see how Aaron reacts while off the medication, so while there the nurse took him back off the medication. It only lasted a couple minutes though and then Aaron's ICP jumped really high before they put him back on.
It was so difficult to leave Aaron. Especially leaving on such a low note. I took a long time saying my goodbyes. I told him how much I loved him and what a wonderful uncle he is to my boys. I was really hopeful that that day he would wake up. They keep telling us to have patience, but its hard. The first few hours of the drive home was very somber.
Christmas Eve my mom called to tell us that when she went in to see Aaron his eyes where open. What a wonderful Christmas present! Then on Christmas day the whole family got to see him with his eyes open. Wish I could be there to see it. They said it takes him a while to focus, but follows your movement. He also squeezes everyones hand like crazy. Hard to tell if he recognizes anyone, and still doesn't follow commands. With physical therapy they are able to have him sit up and then stand. Mom says he looks pained.
Daniel said that Aaron tried to sit up to look at himself in the mirror. Afterwards there was a tear in his eye. Does he understand?
December 30, Aaron is being transferred to a long term facility in Bountiful. It will be nice to have him closer to my parents.
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