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...
Wednesday, August 14, 2013
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.
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