Fire Station Visit

Today Todd, Jake, Luke and I went to visit the fireman and paramedics who responded to our 911 call on May 31st. Some of them along with the EMT's had asked if they could come and visit while we were in ICU, but we just weren't ready. We then got moved to the rehab floor and Jake's schedule got crazy.

I felt bad when we got there because other than one man, I didn't remember the others even being in our house. Then again, things were a bit intense at that point. We learned a few things today that we didn't know at the time. Within minutes of assessing Jake, they knew he had a closed head injury. At the time they thought it was a delayed reaction from being hit in the forehead with a golf club two weeks earlier (that ended up having nothing to do with the aneurysm). He was in serious enough shape they were considering taking him directly via flight for life straight from our house. It was ultimately decided the ambulance could get him to a hospital faster for further assessment and stabilization. The whole time they were at the house, they were calm, professional, efficient and did not give us any indication of the severity of his injury or even that it was a head injury. I found out today one of them was outside on the phone with the Parker ER determining what would be the best course of action. I'm not sure if they knew then or found out later that one of the Centura Hospital Neurosurgeon's was in the Parker ER. He works out of four Denver area hospitals so the fact he was in Parker and only 10 minutes away was incredibly lucky for Jake.
 

Thinking back to that evening and now seeing it through a different perspective brought back a lot of memories as well as some clarity. Todd and I talked after we left the station about what we were thinking on the way to the hospital that day. We really had no idea what was wrong with Jake and certainly didn't even consider he had a head injury...there had been no symptoms. We thought we'd spend a few hours at the ER, he'd wake up and we would all come home. When we got to the hospital, we were taken to a private waiting room, clue #1 that should have told us something was seriously wrong. Within a few minutes, the hospital Chaplain came in and explained they would take us back to see Jake as soon as they could and then she stayed with us, clue #2. To my knowledge, Chaplains don't generally spend that much time with families in the ER for minor issues. When we were finally taken back about 15 minutes later, I saw all the paramedics, fireman, and EMT's standing off to the side. Clue #3, I don't think they generally hang around the ER for routine cases. What did finally tell us that something was seriously wrong was when we saw 15 or so medical people standing around a screen with a picture of a brain and a large white circle, the bleed, on the left side of his brain (it was taken from the top of the head so the right side of the brain showed up on the left side of the screen). We heard "those are the parents" and several eyes turned our way and took a step back from the screen to make room for us next to the Neurosurgeon. I will never forget that image as long as I live.

As hard it was to have all the initial raw emotion of that evening brought back to the surface, I'm really glad we went today. It filled in a few holes and gave me a more complete picture of the chain of events. They were all incredibly nice and very generous with their time. The Captain at the time has since changed positions and even came in on his day off to see us. It meant a lot to Todd and I to be able to thank them in person for being an integral part in saving Jake's life. They even gave a ride in the fire truck around the block which was pretty cool. I think it was a visit we'll all remember for a long time.

Labor Day Weekend

I am finding there are days I handle things well and days I don't. Today is one of those days I don't. The enormity of what Jake has ahead of him is hitting me really hard today. There is so much he has to re-learn...running, walking barefoot, walking on uneven surfaces like grass and sand, riding his bike, swimming, snowboarding...and those are just some of the physical things, the list goes on and on.

This weekend, we finally all got to the pool. We were so excited for the whole family to be able to go and enjoy a couple hours in the sun. Our OT at the hospital had suggested that walking in the pool would be great therapy for Jake. What didn't occur to us before we got there was how he would react when he realized his body didn't remember how to swim or even just kick his legs.

Shortly after this picture was taken he had a complete breakdown. He didn't understand why he couldn't kick his legs when he's been swimming since he was five. It was heartbreaking. Todd and I felt horrible that we hadn't anticipated his reaction, we thought he'd be so happy to be able to hang out in the pool with Luke and walk around. Big lesson learned on our part. His left foot is extremely sensitive and any texture such as carpet on his barefoot is really hard for him, so was the bottom of the pool. The heat of the pool deck and slipperiness didn't help anything either. Needless to say, our pool time was cut short.

I know we will all get this through this, and this was just one of those things that happened and we'll learn from it. There are also many positives that happen on a daily basis. Jake is getting much more independent around the house, and other than going up the stairs to the 2nd floor or to the basement, he's getting around completely on his own.  I just have to remind myself to continue to take things one day at a time.

It's Been a Good Week

It's been a good week and I feel we are all settling into our routine. Jake has been going to school for almost 2 1/2 hours each day and looks forward to it each morning. I can't wait see his smiling face at pick-up as he comes pedaling down the hall on the adaptive bike. We're going to therapy three times a week (speech decided they don't need to see us for another month, yea!), things are still hectic and there's always too much to do each day, but I think we all can relate to that!

Jake and I went to the hospital today for his one month Neurosurgery follow-up. He's healing well from his skull piece replacement and we don't need to go back for another three months. Even though it's only been two weeks since he was discharged, he was so excited to go visit his therapists. He got to see his speech therapist, PT, the school specialist and a few of his nurses. He was so cute telling them about everything that's been going on the past few weeks. He's already talking about seeing the ones we missed today when we go back in another two weeks for his 30 day post-discharge follow-up.

The other big news of the week is our dog Molly came back home last night. My parents have been watching her ever since May 31st, when all this started. We wanted to make sure Jake was more stable since the dog has the tendency to get underfoot, so we didn't have her come home right away. The boys were so excited to have her home and Jake was laughing this morning after being woken up to Molly peeking up on his bed with her face and paws in his face. I don't think I would have been as amused waking up to dog breath in my face, but glad he was happy!

It occurred to me the other day how lucky we are that Jake has such a cooperative disposition, which truly amazes me. Any time a suggestion is made to him such as "make sure you're taking full steps" or "step closer to the handrail, it will make going up the stairs easier" or "try using your legs to help push you back," he comes back with "ok Mom" or "you mean like this?" He is almost always agreeable, kind and sweet. He doesn't get snappy or give me attitude. If a kid has to go through some of the things that he is coping with, it sure makes it easier on a parent to have one with his demeanor. So blessed.

First Week of Therapy

Jake started all of his out-patient therapy this past week. It's quite a change from having therapy twice a day for OT/PT/Speech while in the hospital, to once/twice a week now that we're out. We met each of the therapists this week and it was decided he would have PT twice a week and OT and Speech once a week. It doesn't sound like that much, but when you consider he's going to school now until almost 12:30, then home for lunch and a short rest then to an hour of therapy, it gets a little busy. We're very lucky that he he can go to Children's in Parker which is only 15 minutes away. We're also learning how to fit in the daily home exercises we're given from each therapist. It's extremely important to do more at home now since his appointments are further apart. For now, Todd is overseeing most of that while I am in charge of taking him to his appointments. Still trying to figure out the best ways to divide and conquer.

I had someone ask me this week if I miss going to the hospital. As strange as it sounds, at times I do. When I was there, it was a little bit of a break from the rest of my life, and all I thought about was taking care of Jake and focusing on his therapy. I didn't worry about phone calls that needed to be made, things that needed to be done at the house, errands, finances, work, etc. I'm finding that I'm not doing a very good job giving myself those mental breaks now that we're home and I'm easily distracted. This morning I was making a latte, went to the fridge to get milk while the coffee was brewing, got distracted by a pile of mail on the counter and started sorting through it before I ever got to the fridge. Next thing I know, coffee is running all over the floor. My goal this week is to figure out how to better manage my mental health and not feel so overwhelmed.

We ended the week with a really nice "slice of normal" day today. My side of the family has four birthdays within five days in August (my mom and dad, sister-in-law and nephew) and we got together to celebrate today. Jake was in a great mood, was getting around well, and didn't seem to get overly tired. Luke enjoyed spending time with his cousins and didn't feel left out or that Jake was getting more attention than him. It was so nice to just hang out and visit, eat good food, and hear what's going on with everyone else. We've really missed our extended family get-togethers the past few months.

First Day of School

After two days of antibiotics, Benadryl, Zyrtec, ice, and a lot of Neosporin, Jake's swelling was down enough for him to go to school today. He's still got some pretty nasty scabs from the bites that are healing and a little swelling on his check, but he wanted to go to school so badly that we sent him. We were so proud of him wanting to go back more than being worried about some residual swelling and scabs.

I have to be honest, dropping him off this morning (even though it was only for an hour) was about as emotional for me as his first day of kindergarten. Todd or I have been with him pretty much 24 hours a day for the past two months, and to just walk away and leave him was not easy. Had I not been as confident in the staff at the school, I don't know if I could have left. We have been very impressed so far with how dedicated they are to make sure he has the best possible experience this year, and gets the services he needs. He had a great first day and was really excited to see his classmates and teacher. He'll go for two hours tomorrow and for the next little while. It's a pretty intense couple of hours academically, so we'll see how it goes before adding more.

Jake going to school will require a whole host of things for him to deal with, many he may not even be aware yet as "issues." He'll be dealing with fatigue, both mental and physical; discovering his physical limitations while he's still recovering; social and emotional issues; frustration with things he used to do that don't come as easily; and who knows what else.

So much focus has been on Jake's physical recovery the past two months, we hadn't dealt with much of his mental/cognitive issues until the past few weeks when we started getting reports from testing the hospital was doing. There are areas that he scored remarkably well and others where he's got some work to do, simply due to the fact that his brain is healing. Reading the nuero-psychological evaluation in black and white took awhile to digest. At times it seemed like all of this was just too much for him to deal with when looking at the big picture of everything he has to overcome. I also got very protective and wasn't ready to share these things that might not be obvious on the surface. After giving it all time to sink in, we decided to take it as a piece of the puzzle of where he is today, not where he will end up. When we look at how far he's come physically in just a few months with intense therapy, we are confident he can also overcome the cognitive issues with the same kind of work.

Like so much of his overall recovery, we just don't know how much of this will be regained. We do know that we are committed to helping him any way we can to work towards a full recovery, and it will most likely take a long time. We also know there are a lot of people and resources on his team to help him every way they can, which we are so very thankful for. And most important, we know he has proven to be hard-working, will persevere, and will do everything in his power to overcome the challenges that lie before him.

Settling In

Jake has been home and we have all been back together again now for about 4 days, and we're all adjusting to our changed family. It's definitely different from how we were previously, and we're trying to figure out our new normal. We discovered rather quickly that Jake pushes himself and then gets very fatigued. He is having a hard time understanding that he can't do everything he used to, or go at the pace he'd like to. Just "living" and getting around the house can wipe him out. 

Luke is also having a bit of a tough time. While he is really happy to have Jake home, things are different. It's hard on him at times with the amount of attention Jake needs from us, not to mention all the attention Jake is getting from friends and neighbors who are so excited he's home. He often feels left out and not as important. Other times, he feels like he shouldn't go outside and play since Jake can't. Perfectly normal feelings for an 8 year old, but hard to deal with. 

We've also discovered the challenges in getting things done like we used to. Prior to all this, the boys could be out playing, on the computer, or doing any number of things keeping them occupied while Todd and I did whatever we needed to do. Now one of us needs to be near Jake in case he needs something, or be there to shadow him when he's getting from one place to another. In the past, we would all often load up in the car to go on a Costco run or just run errands in general. We're now finding it's a lot less taxing on Jake to just have someone stay at home with him instead. We're getting quite good and divide and conquer when it comes to running errands and learning to prioritize what needs to be done.

We know over time his stamina will increase  as will his independence and we'll adjust again, but for now it's where we are and we're figuring things out day by day. During this journey over the past 2 ½ months, we have been hit with several situations that were somewhat unexpected, but in retrospect we should have seen them coming …. and this is another one of those.

Jake did get a nice treat last night and got together with a few friends for pizza. He's been missing his friends all summer, so we invited a few over for a short visit and dinner. It was so nice to see them all talking and just hanging out. The protective mom in me was worried that he might be treated differently, but these are all great boys and things went really well.

He is supposed to start school tomorrow, (on shortened days) so yesterday morning we met his teacher at the school to do a dry run of getting to class, in and out of his desk, navigating around the room, etc. It was so nice of him to meet us on a Saturday and I think it will make the transition back to school a lot easier. Jake has been bothered by the fact he was going to have to use a wheelchair to get around the school outside of his classroom. We found out on Friday that the school has an adaptive bike like the one he rode in the hospital and they asked if he might like that better so we're going to give it a try. Nothing like getting a little physical therapy and have a cooler mode of transportation at the same time!

You'll notice I said "supposed" to start school tomorrow....having not spent a lot of time outside this summer, we haven't dealt with the joys of summer bugs and discovered that mosquitoes are out in full force. Mosquitoes have always loved Jake and he has always had a really bad reaction to them. He was out this morning for about 20 minutes and got bit 6 times, once under the left eye, which is now almost swollen shut. He looks just like he did after surgery, poor kid. We've been treating it today with all the home remedies I could think of and are hoping the swelling goes down by morning. If not, we may wait a day or two for school. Under normal circumstances, he'd still go, but he’s got enough other issues to deal with and doesn’t need to be explaining why his eye is swollen on top of everything else. We've decided to leave the choice up to him if he's still swollen in the morning and it won't surprise me if he still wants to go. Hard way to start your first day back.

Jake's Journey - The First 75 Days

Yesterday was a huge milestone and extremely full of emotion. Both Todd and I were on the brink of tears most of the day and I lost that battle more than once. Jake was so excited to be leaving the hospital and got to have a going away party in the morning complete with cinnamon rolls. He had one last round of therapy, lunch, and then we just waited for the discharge paperwork. While it was great to be leaving, it was with some mixed emotions. It may sound strange that we'll miss the hospital, but in a way we will. We've spent a lot of time with his therapists, nurses, and doctors and it will be strange not seeing them every day. Jake also made some friends with other kids on the floor who he is already missing.

Once again, Jake blew us away. His goal has always been to walk out of the hospital and he did just that. For those of you that have been to Children's, you know it's not a short walk. Our room was at the far end of the 6th floor and he made it down the hall, into the elevator and all the way through the lobby with just two short breaks.

As soon as we got home he walked into the house and wanted to go upstairs to see his bedroom. With the help of some very generous friends who gave their time and talent, we got to surprise him with a room redone in a music theme. I had brought home a lot of his Rush stuff the night before so it was there to greet him as well. Right after that he wanted to go down the basement to see his drums. He sat down and played a little then back up the stairs and outside to see some of the neighbor kids who had started gathering when they saw we were home. The kid's stamina was amazing, and probably the result of a lot of adrenaline. We ended the day with some good quality family time and everyone asleep under one roof. Can't ask for more than that. 

I put together a video highlighting the past 75 days, it really helps us keep things in perspective http://youtu.be/aOthihf9914. We'll continue to use the blog to keep everyone updated on Jake's progress as we start this next phase of his recovery. Posts will likely be every 3 or 4 days instead of every other day. Thank you again for all of your prayers and support.