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.
Thursday, August 29, 2013
Sunday, August 25, 2013
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.
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.
Wednesday, August 21, 2013
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.
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.
Sunday, August 18, 2013
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.
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.
Thursday, August 15, 2013
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.
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.
Wednesday, August 14, 2013
We're Home
It was an incredible day today full of a lot of emotion. We are so happy to have our family under one roof again.
Rest of the post to come tomorrow morning...
Rest of the post to come tomorrow morning...
Monday, August 12, 2013
Getting Closer
We are down to a day and a half left at the hospital! Jake is working so hard these last few days, both physically and mentally. His therapists are really pushing him to get as much therapy in as they can before we leave. He's also got quite a bit of testing to finish up which will be included in his discharge summary. He was totally wiped out tonight and was asleep by about 7:30.
Todd and I are also busy getting everything ready for life outside the hospital. He installed extra handrails all over the house so Jake has a rail to use on his right side both going up and down the stairs. We're scheduling follow up appointments with three different doctors, figuring out the out-patient therapy schedules, calling on equipment rentals and the list goes on and on. We also need to pack up his hospital room and get his room at home ready. We are very fortunate that all we needed to do at the house was pick up the throw rugs which are a tripping hazard and install the railings. He won't be using the wheelchair we're renting inside the house, it's simply for longer distances and to help with his fatigue.
It's probably good there is so much to do because we just do it and don't stop to think about all the changes that are right around the corner. He is going from living in a 20x30 hospital room for the past seven weeks where he sleeps, eats and has a bathroom, to a full house that is much more spread out and with a lot of stairs. It's going to be an adjustment for him just getting around, but one I am sure he will gladly take on!
Todd and I are also busy getting everything ready for life outside the hospital. He installed extra handrails all over the house so Jake has a rail to use on his right side both going up and down the stairs. We're scheduling follow up appointments with three different doctors, figuring out the out-patient therapy schedules, calling on equipment rentals and the list goes on and on. We also need to pack up his hospital room and get his room at home ready. We are very fortunate that all we needed to do at the house was pick up the throw rugs which are a tripping hazard and install the railings. He won't be using the wheelchair we're renting inside the house, it's simply for longer distances and to help with his fatigue.
It's probably good there is so much to do because we just do it and don't stop to think about all the changes that are right around the corner. He is going from living in a 20x30 hospital room for the past seven weeks where he sleeps, eats and has a bathroom, to a full house that is much more spread out and with a lot of stairs. It's going to be an adjustment for him just getting around, but one I am sure he will gladly take on!
Saturday, August 10, 2013
Slumber Party
Both Jake and Luke have really been missing each other this past week, even more than normal. Jake gets so upset every time Luke leaves the hospital and is constantly asking when he is coming back. Last night at home, Luke got really sad that Jake wasn't there. I think part of it with Luke is thinking about going back to school on Monday without Jake. Having them together, even in the hospital, brings a sense of normal to this situation. They've started "racing" around the loop on the floor, Luke in Jake's wheelchair and Jake on the bike (see video below). Luke is so sweet and comforting to Jake when he gets upset about wanting to go home. And of course, they joke around and tease each other.
After our last family night at the hospital tonight, we decided to let Luke spend the night in Jake's room since it's the last opportunity before school starts. They are so excited to have breakfast together tomorrow and were already talking about what they are going to eat. I think the final consensus was chocolate chip pancakes and bacon.
Jake's OT has been having him work really hard the past few weeks on practicing going up and down stairs. Our house has a lot of stairs since it's a multi-level and it's been a big concern about him going home. He is really doing well and started taking each step with one foot (like most people do) instead of taking each step with first the left foot, then the right. He's also been having some fun and independence on a bike they let him borrow from outpatient therapy. Here is some video of both the stairs and the bike: http://youtu.be/7apT45uvdhw I wish the bikes weren't so insanely expensive, it would be a great tool for therapy at home and give him some more independence over the next several months while he continues to regain use of his left leg.
Things are starting to get pretty crazy preparing everything for him to come home. There are a lot of moving parts to be coordinated, equipment, phones calls, appointments, arrangements with school, etc. Not only will Jake be coming home but so will our dog Molly who has been staying at my parent's house ever since this all started on May 31st. All very exciting but also a little overwhelming!
After our last family night at the hospital tonight, we decided to let Luke spend the night in Jake's room since it's the last opportunity before school starts. They are so excited to have breakfast together tomorrow and were already talking about what they are going to eat. I think the final consensus was chocolate chip pancakes and bacon.
Jake's OT has been having him work really hard the past few weeks on practicing going up and down stairs. Our house has a lot of stairs since it's a multi-level and it's been a big concern about him going home. He is really doing well and started taking each step with one foot (like most people do) instead of taking each step with first the left foot, then the right. He's also been having some fun and independence on a bike they let him borrow from outpatient therapy. Here is some video of both the stairs and the bike: http://youtu.be/7apT45uvdhw I wish the bikes weren't so insanely expensive, it would be a great tool for therapy at home and give him some more independence over the next several months while he continues to regain use of his left leg.
Things are starting to get pretty crazy preparing everything for him to come home. There are a lot of moving parts to be coordinated, equipment, phones calls, appointments, arrangements with school, etc. Not only will Jake be coming home but so will our dog Molly who has been staying at my parent's house ever since this all started on May 31st. All very exciting but also a little overwhelming!
Thursday, August 8, 2013
Wholly Cannoli
Jake got to go on his out-trip today from the hospital. Every patient
who has been here for a while gets to pick an outing to see how they do
outside the hospital before they are discharged. Jake picked having
lunch at a pizza place near our house, Wholly Cannoli. He spends a lot
of time talking food with his therapists and one day was telling them
about the New York style pizza and Cannoli's, next thing you know, it's
our out-trip!
He got dressed up in one of his new collar shirts (from Rush of course) and put on jeans ... he was so excited to be out of his athletic pull-up shorts. We took him in his wheelchair down to the main entrance to the hospital and then he got into the car on his own and buckled his seat belt. You'd think he'd done it yesterday. It was so nice to have the whole family in the car and look back and see both boys in the back seat, it's been a long time. We didn't take the wheelchair or walker with us, Todd just assisted him while he walked from the car into the restaurant. Here's a short video of their walk: http://youtu.be/HnLHhAXoy78
We discovered a few things we hadn't even thought about. For the past 10 weeks, Jake has been sitting on soft surfaces, his bed, a padded wheelchair or a padded therapy table. The chairs in the restaurant are wooden and after about 10 minutes he was really antsy and uncomfortable. Luckily I had a blanket in the car, so problem solved, but he'll need to adjust to sitting on hard surfaces again. He was also given a tall, heavy glass to drink out of, while in the hospital it's always been reusable water bottles or plastic cups with lids and straws. He did well, but was a little shaky, just another one of those things we hadn't thought about, and I expect there will be many more to come. Overall, he had a great day and did amazingly well. We were so proud of him.
Todd and I have really been struggling for the past week if it's time to go home or if he needs a little more time in the hospital with inpatient therapy. He is not yet "independently mobile" so will need assistance/support getting around the house to make sure he doesn't fall. Staying another week or so might get him closer to that goal. On the other hand, going home will be so good for him mentally and that alone could help him heal/progress. The other concern is going from therapy 13 times a week for OT/PT/Speech to 1-2 times a week. We're wondering how long it will take to get him more independent with such a drastic cut in therapy hours. Ultimately, it's up to his therapists and rehab team, but at this stage, they do listen to our input. If we wanted him to stay longer, I think they would seriously consider it. After a lot of prayer and conversation, we decided to go with their recommendation and will plan to take him home next week.
Based on how things went today, we decided it was time to go ahead and tell Jake that he is going home on August 14th. Pretty much every night when he is exhausted, he has a breakdown about wanting to go home. He is at the point he really needs a date to look forward to and after taking with his therapists after the out-trip, we are pretty confident that date will stick...but, just in case, we told Jake that it's possible plans could change and he may be here a few more days. As excited as he is to go home, I think he tuned out that part of the conversation. :-)
It's all both exciting and scary the same time. We will have spent 75 days in the hospital with daily support from an incredible team of people. Transitioning back to home/school will be an entirely new phase with a new set of challenges, and we'll continue to take it one day at a time.
He got dressed up in one of his new collar shirts (from Rush of course) and put on jeans ... he was so excited to be out of his athletic pull-up shorts. We took him in his wheelchair down to the main entrance to the hospital and then he got into the car on his own and buckled his seat belt. You'd think he'd done it yesterday. It was so nice to have the whole family in the car and look back and see both boys in the back seat, it's been a long time. We didn't take the wheelchair or walker with us, Todd just assisted him while he walked from the car into the restaurant. Here's a short video of their walk: http://youtu.be/HnLHhAXoy78
We discovered a few things we hadn't even thought about. For the past 10 weeks, Jake has been sitting on soft surfaces, his bed, a padded wheelchair or a padded therapy table. The chairs in the restaurant are wooden and after about 10 minutes he was really antsy and uncomfortable. Luckily I had a blanket in the car, so problem solved, but he'll need to adjust to sitting on hard surfaces again. He was also given a tall, heavy glass to drink out of, while in the hospital it's always been reusable water bottles or plastic cups with lids and straws. He did well, but was a little shaky, just another one of those things we hadn't thought about, and I expect there will be many more to come. Overall, he had a great day and did amazingly well. We were so proud of him.
Todd and I have really been struggling for the past week if it's time to go home or if he needs a little more time in the hospital with inpatient therapy. He is not yet "independently mobile" so will need assistance/support getting around the house to make sure he doesn't fall. Staying another week or so might get him closer to that goal. On the other hand, going home will be so good for him mentally and that alone could help him heal/progress. The other concern is going from therapy 13 times a week for OT/PT/Speech to 1-2 times a week. We're wondering how long it will take to get him more independent with such a drastic cut in therapy hours. Ultimately, it's up to his therapists and rehab team, but at this stage, they do listen to our input. If we wanted him to stay longer, I think they would seriously consider it. After a lot of prayer and conversation, we decided to go with their recommendation and will plan to take him home next week.
Based on how things went today, we decided it was time to go ahead and tell Jake that he is going home on August 14th. Pretty much every night when he is exhausted, he has a breakdown about wanting to go home. He is at the point he really needs a date to look forward to and after taking with his therapists after the out-trip, we are pretty confident that date will stick...but, just in case, we told Jake that it's possible plans could change and he may be here a few more days. As excited as he is to go home, I think he tuned out that part of the conversation. :-)
It's all both exciting and scary the same time. We will have spent 75 days in the hospital with daily support from an incredible team of people. Transitioning back to home/school will be an entirely new phase with a new set of challenges, and we'll continue to take it one day at a time.
Monday, August 5, 2013
Post Rush Euphoria
Jake has been on cloud nine since getting the gift package from Rush on Saturday. I think every person who has entered our room has been treated to viewing and hearing about first, the drumsticks "that Neal Peart actually used," then the hand written card and finally all the other memorabilia. All during Jake's stay at the hospital, the Rush conversations with the Doctors have been really funny since many of them grew up with Rush and they think it's so cool that a 10 year old boy likes them so much. Now, they are seriously impressed by the band with all the things he was sent. We even had one doc today ask if he could take a picture of the drumsticks. All in all, pretty amazing.
Jake has been quite the fashion plate the past few days too...sporting his new (and sometimes oversized) shirts and not-so-matching Rush socks, but he just doesn't care, he's excited to wear as much as he can. All this despite the horrible swelling he's had from surgery, especially around his eyes. He could barely see yesterday, but it hasn't slowed him down one bit. All he has needed for the pain has been Tylenol and he had a full day of double session therapy yesterday. Todd was ready to cancel all the therapy when he saw how bad Jake's eyes were swollen yesterday morning, but he said "No Dad, I'm fine to go to therapy." He was really excited because in OT he was able to hit his left drum stick 20 times before losing his grip, a new personal record. We didn't attempt his unassisted walking due to his balance being off from his reduced vision, but he went quite a ways with his walker.
We are excited to see what this week of therapy brings as he heals from surgery and are praying his discharge date of August 14th sticks. We are all ready to have him back at home.
Jake has been quite the fashion plate the past few days too...sporting his new (and sometimes oversized) shirts and not-so-matching Rush socks, but he just doesn't care, he's excited to wear as much as he can. All this despite the horrible swelling he's had from surgery, especially around his eyes. He could barely see yesterday, but it hasn't slowed him down one bit. All he has needed for the pain has been Tylenol and he had a full day of double session therapy yesterday. Todd was ready to cancel all the therapy when he saw how bad Jake's eyes were swollen yesterday morning, but he said "No Dad, I'm fine to go to therapy." He was really excited because in OT he was able to hit his left drum stick 20 times before losing his grip, a new personal record. We didn't attempt his unassisted walking due to his balance being off from his reduced vision, but he went quite a ways with his walker.
We are excited to see what this week of therapy brings as he heals from surgery and are praying his discharge date of August 14th sticks. We are all ready to have him back at home.
Saturday, August 3, 2013
RUSH
Ever since I can remember, I have always loved the band Rush. My early memories were of air-drumming to the song Tom Sawyer in junior high school. There have been many albums and may memories since then.The trio of musicians from the Great White North have produced some of the best music ever. Their music just seems to transcend time.....
Earlier this year their music touched another generation when Jake heard them. After listening to a few songs, and hearing the drum efforts of Neil Peart, he became a hard-core fan. He watched every video he could find on the internet showcasing the band.
Today, I went from someone who was a fan, to someone that has true respect for all the people in this band and the management team. As many of you know, Rush's management team reached out to me earlier this week. They saw my email, and the many other emails that followed mine, and took notice. They read this blog that Dana posts on, and immediately wanted to help. Emma, the contact I had in Ontario, set me up with an appointment to meet the manager when they came through Denver for the concert. I expected maybe a CD that I would be able to give to Jake to help uplift his spirits a little bit. What we actually got blew my mind.......
This morning, I met with the band's road manager at his hotel in downtown Denver. He had two bags with him; one for Jake, and the other for Luke. They had actually read the blog and realized Jake had a brother, and did not want to exclude him. The stuff in those bags were pretty cool...........
First, the signed "get well soon" card and autographed 30th anniversary DVD.
Earlier this year their music touched another generation when Jake heard them. After listening to a few songs, and hearing the drum efforts of Neil Peart, he became a hard-core fan. He watched every video he could find on the internet showcasing the band.
Today, I went from someone who was a fan, to someone that has true respect for all the people in this band and the management team. As many of you know, Rush's management team reached out to me earlier this week. They saw my email, and the many other emails that followed mine, and took notice. They read this blog that Dana posts on, and immediately wanted to help. Emma, the contact I had in Ontario, set me up with an appointment to meet the manager when they came through Denver for the concert. I expected maybe a CD that I would be able to give to Jake to help uplift his spirits a little bit. What we actually got blew my mind.......
This morning, I met with the band's road manager at his hotel in downtown Denver. He had two bags with him; one for Jake, and the other for Luke. They had actually read the blog and realized Jake had a brother, and did not want to exclude him. The stuff in those bags were pretty cool...........
First, the signed "get well soon" card and autographed 30th anniversary DVD.
Next, a ton of shirts, hats, stickers, socks, shoelaces, postcards, guitar picks, bobble head dolls, etc, etc,
And one that was very special to Jake......
All in all, a very happy day for Jake. I'm not sure if he truly recognizes how incredible all of this truly is, but he will.
By the way, for those of you who have no idea who Rush is.....
A HUGE thank you to Rush and the management team SRO/Anthem for making this happen.
Another HUGE thank you to everyone who reached out to Rush through email and phone calls. This could not have happened without your love and support of Jake.
Friday, August 2, 2013
Surgery #2
Taking Jake down for his surgery today was such a different experience from his first surgery two months ago. That entire night was a blur and everything happened so fast due to the severity of his brain injury and the need to get the pressure released as quickly as possible. In many ways I think the shock and disbelief we were feeling helped us get through it...we were just numb.
Today, we were part of the entire process. We were there yesterday afternoon when the neurosurgeon came to the room to make sure we didn't have any last minute questions and then held Jake's hand when they put in his IV for the pre-surgery blood draws. We went with him down to pre-op at 6:30 this morning and talked to several medical personnel about consents and explanations of what was coming. We put on sterile suits (he thought it was pretty funny they gave both of us the same size suit) and went with him into the OR and held his hands while they put him under. Then we had to walk away and leave him on the operating table in a room full of strangers. Not easy, goes against every instinct you have as a parent.
We sat in the same waiting area as last time, only difference is, it is A LOT busier on a Friday morning than it was on that Friday night. There were over 25 other kids listed by number on a board all having surgery this morning. I think there was only one other family in the waiting area with us last time. Watching the clock and waiting for hourly updates from the OR Nurse was just as stressful. You hold your breath when the phone rings wanting to hear that everything is going ok.
We were very happy to see his neurosurgeon two and a half hours after we left Jake in the OR and hear the surgery went well. He said there were no complications and he was pleased with how things went. He did have to drain some excess fluid from his brain before replacing the bone. It's something they need to keep an eye on the next few weeks to make sure his brain fluid levels are where they need to be and draining properly.
When we got back to post-op, Jake was very pale and his heart rate was a bit high. He was alert though and when the nurse asked him for a number, he said "36." The nurse looked at him all alarmed and asks "Your head pain is a 36?" He replied, "No, you asked me for a number and 36 is my favorite number." It was kind of funny. We finally got back to our room around 1:00 pm. Jake's favorite expression the rest of the afternoon was "I think I'm going to take a nap, is that alright?"
I had forgotten a lot of what we dealt with in the ICU....beeping monitors, constantly watching numbers on a screen that are measuring his oxygen level and heart rate, getting blood pressure, and neuro checks every four hours....I'm glad all of this will only go on for a few days. We've become pretty independent on the rehab floor and it's strange to have nurses and doctors in and out so regularly again.
Today, we were part of the entire process. We were there yesterday afternoon when the neurosurgeon came to the room to make sure we didn't have any last minute questions and then held Jake's hand when they put in his IV for the pre-surgery blood draws. We went with him down to pre-op at 6:30 this morning and talked to several medical personnel about consents and explanations of what was coming. We put on sterile suits (he thought it was pretty funny they gave both of us the same size suit) and went with him into the OR and held his hands while they put him under. Then we had to walk away and leave him on the operating table in a room full of strangers. Not easy, goes against every instinct you have as a parent.
We sat in the same waiting area as last time, only difference is, it is A LOT busier on a Friday morning than it was on that Friday night. There were over 25 other kids listed by number on a board all having surgery this morning. I think there was only one other family in the waiting area with us last time. Watching the clock and waiting for hourly updates from the OR Nurse was just as stressful. You hold your breath when the phone rings wanting to hear that everything is going ok.
We were very happy to see his neurosurgeon two and a half hours after we left Jake in the OR and hear the surgery went well. He said there were no complications and he was pleased with how things went. He did have to drain some excess fluid from his brain before replacing the bone. It's something they need to keep an eye on the next few weeks to make sure his brain fluid levels are where they need to be and draining properly.
When we got back to post-op, Jake was very pale and his heart rate was a bit high. He was alert though and when the nurse asked him for a number, he said "36." The nurse looked at him all alarmed and asks "Your head pain is a 36?" He replied, "No, you asked me for a number and 36 is my favorite number." It was kind of funny. We finally got back to our room around 1:00 pm. Jake's favorite expression the rest of the afternoon was "I think I'm going to take a nap, is that alright?"
I had forgotten a lot of what we dealt with in the ICU....beeping monitors, constantly watching numbers on a screen that are measuring his oxygen level and heart rate, getting blood pressure, and neuro checks every four hours....I'm glad all of this will only go on for a few days. We've become pretty independent on the rehab floor and it's strange to have nurses and doctors in and out so regularly again.
This was another big milestone in his journey. We are so thankful
things went well today and we are one step closer to taking him home.
Subscribe to:
Posts (Atom)