We decided to make a weekend out of it. So, we rented a cabin in Charlottesville and brought the whole family, including our friends Mike, Marcy and their son Kaden, and Harlie's nurse Caylee and her boyfriend.
We drove up Friday night and got pizza and hung out at the cabin for the night. On Saturday, all the boys went on an 8-mile hike (Ragged Mountain) and us girls had a nice, quiet, lazy morning. Then we all met up for lunch at Three Notched Brewery. The plan was for us all to spend most of the afternoon at the cabin, then Mike, Marcy, Tom, me and Murphy would go to the concert that night. And Caylee and Blake were going to take Cooper, Kaden and Harlie to the movies. But, as we all know, sometimes things don't go as planned.
After we had eaten, we went outside to the back of the brewery, where there was a band and a large, grassy area for the kids to run around. The little kids were chasing Murphy around and he was being great with them, letting them catch him and tackle him and just being silly with them. A little boy that was there joined in the fun and they were having a great time. Here are some of the pictures I took just a few minutes before Murphy fell.
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| Murphy being silly with Harlie's sunglasses. |
The area in the background behind him is where he fell.
He was letting the little kids tackle him, hang on him, knock him off the tricycle, etc.
I just happened to look in the direction of the boys running when I saw Murphy fall. From where I was, I thought he slipped on loose gravel, because his feet came out from under him (like it would if you slipped on ice) and he landed on his back and his head hit the ground and bounced back up. It made a very loud thud sound and everyone that was outside turned to look in that direction. We ran to him to see if he was okay and we didn't realize there was a rope there until we had to duck under it to get to him. When we saw his neck, it was then that we realized he hadn't seen the rope either, and had clothes-lined himself, which is how he got knocked off his feet.
We had him lean up against that metal bin in the left of that photo and get himself together. He was very confused and upset. It was clear he couldn't (or shouldn't) hurry to get back on his feet. So, Tom went and brought the car to him. Caylee started asking him questions and Murphy couldn't tell her what day it was or where he was or what he had for lunch just a little while ago. He said his vision was very blurry and it was really upsetting to him. We had two car loads of adults/kids, so we filled our car with people and went back to the cabin.
I went to get our insurance cards from my bag (which had been at the cabin) and Tom and I put Murphy back in the car and took him to the emergency department at UVA. They evaluated him pretty quickly. The first thing they saw was his neck.
They said they don't usually see that kind of damage from an accident - it is usually the result of intentional harm (hanging or strangulation). Yikes. So, they ordered a CT scan of the neck just to make sure everything was okay there. The doc said that since he's already going to be there, they might as well do his head, too, just to cover all bases. Based on Murphy's physical exam, he appeared to be "okay". There wasn't anything alarming to tell them there was something more serious going on. In fact, we told them we had tickets to see Mumford and Sons that night and we joked that they had to hurry up and "fix" him so we could go. They joked right back and said they were going to get him there. My expectations nowadays are pretty fluid - so I knew we were not going to be able to take him to this concert. While certainly disappointing, his well being is clearly far more important in the grand scheme of things.
However, after about an hour or so, he started vomiting. They called over to CT and asked them if they could see him sooner. They got an IV started and gave him some Zofran and Tylenol via IV since he was vomiting so much.
When he got back from the CT scan, I wasn't really THAT concerned. I was thinking he just had a concussion. But then both the resident and the attending doctors came in, and we could tell it was more than that just by the looks on their faces. The attending doctor said something like, "there is an area on the left side of his brain that is very concerning." And she went on to say bleeding and they already called the neurosurgical team and that we would begin to see a lot of activity.
Ugh. I'm not going to lie, it was really hard to hold myself together. And I speak for Tom, too, because I know he felt the same way. It was very scary - even for this seasoned set of parents who have been scared in the hospital many times before.
A neurosurgeon came in and gave him a more extensive exam and he seemed to do well on that. There was nothing obvious that I could see that was weird or that looked like he "failed" at anything. So, he said they would repeat the scan in four hours to see if it was still bleeding. But, they had to come in and do a neuro check once every hour.
Those four hours between scans were very hard. We were looking at him so closely, looking for the earliest sign that something wasn't right so they would have the time they needed to figure things out. I know I do this a lot already with Harlie. Which probably made this experience even more tiring. It is exhausting to worry about the life of your child - not their enjoyment of life as most parents do. I'm talking about their ACTUAL life.
After a while, they got him a room in the PICU. He really seemed to be fine. So, at 9pm, Tom left to go get dinner for us. While he was gone Murphy had a rough spell and started vomiting again (this was with several anti-nausea meds on board already) and he really complained about his head hurting (like wincing and putting his hands on his head). This looked like the most pain he had up to that point. Ugh, this was not a good sign! 10pm couldn't get here fast enough!
After he got the scan, it seemed to take a long time for them to come tell us the results. Every minute that ticked by felt like an eternity. I started to think that was a good sign. At least they weren't running in here with consent forms, whisking him off to surgery.
Then a few of the PICU docs came in with a rolling computer. They showed us the two scans side by side and showed us that it had gotten bigger.
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| The 6pm scan is on the left, the 10pm scan is on the right. |
I shouldn't have asked - but I asked them what their guess was as to what the neuro team would do. They said their guess was that he would need to have surgery to pull the blood off. Geez.
The neurosurgeon came at midnight to give us the official results. What is up with making us wait so long for these results?! He did another exam and thought Murphy did well. So, he said they wanted to get one more scan to see if it was still bleeding. UGH! He said they would rather not do surgery unless they absolutely had to. So, they ordered another scan for 2am. He's such an agreeable, non-complaining kid at baseline that it made depending on him to know something was amiss, pretty frightening. This really felt like torture. The nurse could tell I wasn't thrilled with more waiting. So, she reassured me that she would be watching him like a hawk and she would alert them at the first sign that something was wrong. When she went to do the next neuro check she asked him if he knew where he was and he said, "at someone's house." ACK! But, she said he was still really sleepy, so she made him wake up more and then asked him again and he corrected himself. Whew!
We kept thinking that I would send Tom back to the cabin to get some stuff - like more comfy clothes, or our toothbrushes, but we never felt like he could leave. So, we both settled in on the couch and chair and tried to get some sleep. I think he got back from the scan after 2:30am. I watched the clock and we must have drifted to sleep because the neurosurgeon woke us up at 4:30am. Ugh - I am SO glad we fell asleep because I would have been furious to wait so long for results!
This scan showed that it got only slightly bigger. So, that meant it was slowing down, at least. Again, his physical exam was good - so they wanted to wait it out a little longer.
I think they got another CT scan at 6am and they also did a fast MRI. At this point, they wanted to switch to MRIs to lessen his radiation exposure. At some point that morning, a different neurosurgeon was on duty and he and the attending neurosurgeon, Dr. Jane came to see us. We loved Dr. Jane, so that was great. He sat down and took his time explaining everything to us. Murphy's diagnosis is a traumatic brain injury (TBI), Epidural Hematoma with a non-displaced skull fracture. He said that there are some positives to surgery (craniotomy). It is very reliable, it speeds up recovery by getting the blood off the brain faster (otherwise the body just has to re-absorb it, which takes time) and some parents find it reduces their fear. Amen! Sounds great! So, when are you scrubbing in, Doc?
I had to tell him that our daughter has had two craniotomies, so this surgery doesn't scare us. But, he said, despite all those positives, he would really rather avoid it if at all possible. He said that the blood is gelatinous in there, so he can't just drill a hole and pull it out. He has to remove all the bone over it, and that it would be a large area. And he would have to shave his hair. Again, where's the negative in this scenario? He said, "Well, since I'm hair challenged, I respect his hair." Haha! But, clearly a craniotomy does have risks, so they try to avoid it, if possible.
The best part is that Dr. Jane told Murphy that he is going to be fine and will fully recover in time. It is so weird (and absolutely positively amazing) to have an isolated incident, that you feel confident will be fully resolved. I never leave the hospital like that with Harlie. It is always "until next time." My fears with her NEVER go away.
Since then, all of his MRIs are unchanged. It hasn't decreased in size, but they said that could take weeks to months.
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| Tom brushing Murphy's teeth. |
And what a small world! The PICU team did rounds and the NP was Lauren! Lauren was Harlie's nurse on the day Harlie coded and arrested last year (March 3, 2018). Isn't that crazy?
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| Harlie and Lauren in March 2018. |
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| Lauren and Harlie on March 17, 2019. |
Later on that day, with surgery not likely, they cleared him to eat clear foods - like this popsicle.
Then Monday morning, cereal.
The Ronald McDonald House is booked, so I got a hotel room at their medical rate, right around the corner. Tom went back to Richmond early Monday morning. And I've tried to just do what I do when I'm in the hospital. It is so good to get out of the hospital and have that short walk to and from the hotel each day.
It is funny how I forgot for a second how different the hospital is on a weekend vs. a weekday. Haha! Monday was such a busy day! The brain injury team came by and spent some time with us. Occupational therapy came by and she gave Murphy a bunch of tests, some verbal/memory ones and some balance ones. He did well. And physical therapy came by and she had him walk for the first time since his fall. He did well with that, too.
I noticed that he has a brain injury, really, for the first time that day. He asked me several times during the day what the pulse ox thing was on his finger and why does he need to wear it. He asked me several times what the numbers on the monitor mean. So, that was a little weird. Expected - but still felt a little weird. Especially, since he's been doing so well.
Nutrition came by and wanted him to place his orders for lunch, dinner and breakfast on Tuesday. I could tell immediately that he was overwhelmed. He tried to read the menu, but he looked like it hurt. So, I tried to help him by giving him less options. I only read things that I knew he would be more likely to eat. But, right then the PICU team rounded on him, so I had to leave. I told the nutrition person to help him by slowing down a bit, and I went to attend rounds.
It is kinda hard to tell when he's being "off" or he's just being a goofy 14-year old boy. For example, when the PT came, she asked him if there are stairs to get into his house. He said yes, and said, "There are three stairs to go in the back door, five stairs to get in through the garage and about seven to go in the front door." Impressive! Then he said, "Or, best case scenario, I can take a ladder to my window."
What?!
So, she said, no ladders, buddy! But, was that his brain injury - or his regular goofy self? Really hard to tell. Haha!
At some point they switched him over to neuro checks every two hours instead of every one hour. He's really tired, because they are constantly waking him up and making him answer a bunch of questions.
Monday night they moved him to the Intermediate Unit. Between the busy day and the move to another unit, he did not feel good at all that night. His new room is a shared room, but there isn't anyone with him right now. I don't know how they expect anyone to get better while being squished into a very small room with another person. I crossed my fingers that he wouldn't get a roommate before we were out of there.
His nurse this morning (Tuesday) said he was her most agreeable patient. And that is exactly the way he's been this whole time. He's been funny and he makes everyone who comes to see him laugh. He asks questions and is polite and respectful. I know he was so scared listening to a lot of these conversations with his doctors. He is so good and I am so proud of how he has handled himself during this ordeal!
Anyway, his last MRI was this morning (Tuesday) at 4am. It remains stable and unchanged. So, Dr. Jane (neurosurgeon) came by and said he is comfortable discharging him today! Woohoo!
The brain injury team and the neurosurgical NP came by again this morning and gave me some specifics on what he can/cannot do. No riding his bike, diving or jumping into a pool or doing anything that increases his risk of falling or hitting his head for the next three months. Hitting his head would be the worst thing he could do. So, no PE at school for the rest of this school year for him. He can only have less than two hours of screen time per day, and very little reading.
Clearly, he is going to miss a lot of school. His returning to school work (at home) and then school will be done as he can tolerate. His neurosurgeon said if he tried to learn something right now, not only would it be difficult, he would have very little memory of it. And they recommend the return to school should be done gradually.
He will have his next MRI in Charlottesville on Monday and will see Dr. Jane afterwards. I want him to see Dr. Jane for now, since he is familiar with Murphy and has examined him several times. Once we get to more spaced out follow up appointments, I will look at transferring his care to Richmond. The neurosurgical NP said they know the team at VCU and have a good relationship with the neurosurgeon there, so it sounds like that transition could be a smooth one. One can only hope...
So, once we knew they were letting us take him home I headed over to my hotel to check out. While there Murphy sent me this text:
So much said in so little words. Haha!
Then we were off!
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| Waiting for Dad to get the car. |
I've been working on this post for days. So, I hope it makes sense. Lots of interruptions and breaks make for a difficult focus!
So, that's it for now. I'll update more when I can. Thank you so much for all your kind words, comments and texts. We appreciate the support more than we can say. I'm sorry if you sent a message and I haven't responded yet. It is very hard to keep up with everything while in the hospital and I get so tired and distracted. Please know it meant so much to me to hear from you!
Much love,
Christy xo
