No Sitter...Not So Bad

 It was really nice hanging out last night one on one with Jake and no sitter. We went for a walk outside, ate our dinner together, read a bunch of jokes, played some games, listened to music and watched a movie. He would have gone to sleep at 6:00 pm had I let him, so we just kept busy. The new medications and lack of sitter seemed to work pretty well. He still woke up quite a bit but was able to get back to sleep more quickly. The one thing I discovered is that he is talking in his sleep. There were a few times he called out to me and when I got to his bed, he was asleep. After that, I would try and answer him from my bed and only get up if he called a couple of times. 

We're trying to keep him up and in his wheelchair as much as we can, but his tailbone seems to be causing him a lot of pain and sitting makes it worse. We've been trying to figure out why it hurts him so much and can't come up with anything. It really hurts when he's sitting, but he also complains of pain when he's lying in bed. It was hurting him so much today in OT/PT, he didn't have a very good session. We've asked the Physical Therapist and the Dr's and no one can figure it out either. There is the possibility that part of it is his fixation phase that he's going through, but my gut tells me it's really hurting. We're going to tackle it more tomorrow.

This morning we were working with his new hand brace and drumstick and I had him squeeze both my hands. He had slight finger movement in the thumb, first and second fingers. It was the most movement we've seen in his hand which was pretty exciting. We've been told that big muscles come back first and work their way down to the fingers and toes, so seeing some finger movement already was a great sign.

One of the funny things that happened today.... He asked me to have Todd bring him his flashlight. When Todd got there and gave it to him, he turned it on and said "The next time a Dr. or nurse shine their flashlight in my eyes, I'm going to shine mine in theirs. They do it all the time and it's annoying." 


Specific Prayer Requests:

1. Healing and pain relief for his tailbone
2. Continued improved sleep patterns
3. Comfort and peace for Jake as he goes through this extremely tough process

Just Another Saturday

Jake's sleep patterns seem to be getting worse instead of better. Last night he slept from 9-11 pm, 3-5 am and 7-8 am. Todd had a long talk with the Dr. this morning and we've decided to take him off a couple of the meds they have been giving him that are supposed to be helping him sleep. They obviously are not working...especially when you look at the fact, they give them to him at 9 pm, but aren't fully in his system for a good hour and he's waking up an hour after that and staying awake for several hours. We are also doing away with the sitter tonight to see if that makes any difference. I wouldn't want a stranger trying to sooth me in the middle of the night either. I've got a good feeling about him sleeping tonight, but I'll take any good vibes you want to send my way. :-)

Luke got to come to physical therapy with Jake again today. It is so cool to see how much Luke wants to be here helping Jake. When he comes to therapy, it's more just two brothers playing than hard work. Here is a short clip from part of what they were doing today. http://youtu.be/c0hfOyKGkhY

We are trying really hard to let Luke drive the process and not tell him when he has to go to the hospital or how long he needs to stay. They lay in bed together and watch movies or Luke tells Jake about his day. Today Luke was cruising around in Jake's wheelchair and decided he wants to buy one since they are "fun." Seeing them hang out is a little slice of normal that we all really look forward to.

The other highlight of today was Jake got a small brace for his left hand. As I mentioned last night, he was really bummed he couldn't hold his drumstick in his left hand. One of his therapists had told him her husband was a drummer, so this morning he told her he wants to be able to hold his drumstick. She formed this small brace to go over his thumb that will help hold the base of the stick and he is going to keep working on the grip of his left fingers to hold it the rest of the way. Todd and I thought it was pretty cool she came up with a way to give him hope and continued motivation to do something he loves.

One Month In

It's hard to believe this whole thing started a month ago. This past 30 days has been a blur and things that I once thought were so important have completely fallen aside. I often have no idea what day of the week it is and the only reason I know the date is because the nurse writes it on Jake's whiteboard in his room each morning.

Looking back, Jake has made amazing progress this first week of rehab, he's been working so hard.

• When we moved up to the rehab floor last Friday, he was barely speaking above a whisper and now he's fully conversational and actually pretty witty at times. His volume is getting much closer to normal but still lacks inflection.
• He's gone from his sole source of nutrition being a feeding tube, to adding pureed foods, now transitioned to soft foods and the feeding tube is gone.
• Jake's head and trunk control continue to improve each day. Earlier in the week it took both therapists to help support his back and neck while sitting. Today, he needed very little support while sitting and when we go for walks in his wheelchair, I no longer worry about making sure my hand is on the side of his head in case he should bobble.
• He is starting to feed himself and take care of some of his basic needs like teeth brushing and he even washed most of his own hair in the bath today. We just have to be really careful with the eating and drinking, as when he's feeding himself, he can't get things into his mouth quick enough and we don't want him choking.
• Both eyes are now wide open instead of the left being partially open and the right being barely open.
• His agitation and constant busyness on the right side have really mellowed.
• His pre-aneurysm memory is absolutely amazing.

Unfortunately, he is still not sleeping great, spends a good portion of the day fixated on things and is becoming much more aware of the lack of movement on his left side. He said to me tonight, "Mom, I just want to drum again and I can't even hold my drumstick." He knows if he wants to roll over onto his right side, he either needs help or has to pull his left leg over. All I can do it tell him to use this as motivation when he doesn't want to go to therapy or thinks it's too hard. Inside my heart is breaking that he has to go through this.

We've also discovered a few cognitive issues I honestly had not even thought might be an issue. Most are due to the left side deficiencies he has at the moment which it appears are extending to his vision. For example, we were playing Connect Four and his checkers were set off to his left side and he didn't think he had any to play with. Today, he was playing a memory matching game and didn't turn over any of the cards on the left side of the table until they were pointed out to him. The speech therapist had him read aloud and he would start in the center of the page (left to right center, not top to bottom) and skip all the words on the left. We're told this is all part of re-training the brain and "normal" for his type of injury, it will just take time to come back. As much as he loves to read, that was the hardest one for me to witness.

Specific Prayer Requests:
1. Continued healing of Jake's brain to get him past the fixation phase.
2. Improved sleep patterns for Jake
3 Strength and determination for Jake as he works through rehab

A Day in the Life

Jake got his feeding tube out today so the arm brace also went away! It wasn't planned, but he threw up this morning during speech therapy and it was determined they would just take it out. I was so excited to walk in and see his whole face free of tape and tubes!

I thought I had mentioned this in a previous blog this week, but now realize that I didn’t.  We are of course very excited that Jake has moved to the rehab floor and has started the OT/PT/speech therapies, but as you know from my recent posts he’s going through a tough time right now, so Todd and I are taking turns being at the hospital in 24 hour shifts. We are switching places each day around 2:00 pm.  We aren't sure how long this will last, but for now we feel that this is necessary even though it’s pretty taxing on both of us. We have a sitter (provided through the hospital) that is helping us with the overnights, but one of us will always be there when he gets emotional and cries out for his mom or dad.

Even with all of this, it's really hard on Jake that we both aren't there. Todd was at the hospital earlier today and I got a very teary phone call last night and again this morning from Jake telling me he missed me and wanted to know when I was coming in. He does the same thing when I'm there and Todd's home. It's really hard on both boys getting only one parent at a time.

Here is what an average couple of days looks like: 

6:30 am -- Get up at home with Luke, get him off to day camp, try  and get some work done, deal with phone calls regarding insurance, Jake's care, etc. that can't be handled while at the hospital.

2:00 pm – 3:30 pm– Arrive at hospital, talk with Todd before he leaves, spend time with Jake, play tic-tac-toe, help him go to the bathroom, get him out of bed and into his wheelchair, get him a drink, answer repeated questions such as "When will Dad be back," "When is Luke coming," "Do I have to go to therapy".

3:30 pm - 4:15 pm -- Go to OT/PT, field several repeats of "Can I lay down," "Can I take a nap when I'm done," "When is therapy over".

4:15 pm - 5:00 pm -- Go for a walk, try and keep Jake distracted and up in his wheelchair for a good 45 minutes to build neck and back strength.

5:00 pm - 7:00 pm -- Dinner, bath, entertain. Goal is to keep Jake awake so he sleeps better at night. May have a visit from Luke or other family member. Reading, tic-tac-toe, answering repeated questions such as "When will Dad be back," "When is Luke coming," "Can I go to sleep, " "Are you staying tonight".

7:00 pm - 7:30 pm -- Sitter arrives and we discuss Jake’s current status.

7:30 pm - 8:30 pm -- Get Jake ready for bed and try and help him get to sleep. Answer repeated questions. Generally sometime during the evening, he gets really emotional since he's so tired and wants to know "Why did this happen to me, I didn't do anything," "When can I go home and sleep in my own bed," "Why can't I be a normal kid," "I forgot how to walk".
8:30 pm - 10:00 pm -- If we're successful in getting him to sleep, I leave and go to the lounge to write blog, catch up on phone calls, check email, etc. If not, I help try and soothe him to sleep.

10:00 pm - 6:00 am -- Intermittent sleep for both of us. I let the sitter handle the first few "Mom's" but if he calls a third time and sounds more distressed, I get up to soothe, usually anywhere from 2-5 times per night.

7:00 am - 8:30 am -- Sitter leaves at 7:00, order Jake breakfast, get him dressed and try and keep him from falling back asleep.

8:30 am - 9:00 am -- Load Jake into his wheelchair and head to speech therapy.

9:00 am - 9:30 am - Back to bed, entertain, answer questions, try to keep him from falling asleep.
9:30 am -10:15 am -- Load back in wheelchair and head to OT/PT.

10:15 am - 1:00 pm-- Back to room for rest until next therapy. Family member arrives during this window for a 2 hour reprieve. Talk to Dr's, order lunch for Jake, try and check email, check in with work. When Jake doesn't sleep during this time (which is often), help entertain, answer questions, help him turn from his back to his right side, then back to left side numerous times.

1:00 pm - 1:30 pm -- Load Jake into his wheelchair and head to speech therapy.

2:00 pm -- Todd arrives and we do a quick brain dump of what's happened during the day at hospital and home.

2:30 pm -10:30 pm-- Head home to get Luke from day camp, spend time with him, try to get caught up on loose ends.

10:30 pm – 6:30 am – Get some much needed sleep!  :-)

And then start it all over again ….

Hi from Jake

I do a kids version of the blog for Jake's classmates that I was telling Jake about and when I asked if he'd like to write a note to his friends, he said yes. Here's what he had to say:

Hi everyone,

I'm doing great. I can't wait to come back and see everybody. I have to go to therapy four times a day and I don't like it. They work me too hard and make me sweat. I have to eat pureed food and I hate it. I like the drinks they have here. I have a tube in my nose that I hate. I also have tape all over my face, it's annoying and feels weird. (it holds the feeding tube in) I also have a brace on my arm that I hate, I have it so I don't pull my feeding tube out. I've done that several times. I have a drawing board that I really like and we play a lot of tic-tac-toe. Thank you so much for the cards.

Jake


He expressly asked me to sign his name so they would know it was from him. :-)

I wanted to share another funny story...Jake had just fallen asleep this morning at 7:30 and I had to wake him up for an ultrasound at 8:00. (He developed a lump by his groin yesterday they wanted to check out.) On the way down to ultrasound, he says to me "Have you ever heard of the expression rude awakening?" I said "yes," and he says to me "that's what you did to me." Cracked me up.

The ultrasound came back as a swollen lymph node and some excess fluid which will be treated with IV antibiotics. He just got his other PIC line out a few days ago, so another IV back in.

Highs and Lows

Jake slept a little better last night and got a solid five hours, only problem it was between 5:30 -11:30 pm. :-)   He only got another 2 1/2 the rest of the night until 7:00 am. We kept him up until 8:00 tonight and as of now, he's sleeping and we're hoping for a good night. It reminds me of when we were trying to get him to sleep through the night as a baby and kept slowly shifting things a little bit later each night.

When I got to the hospital this afternoon, Jake was really tired and pretty emotional. He had already gone through three sessions of therapy, with only a one hour nap.  He kept alternating between telling me how much he loved me and giving me hugs (which I loved) and saying "I just want to be a normal kid" … "normal kids don't have tubes coming out of their nose" … "I can't even walk" … "I want to go home and sleep in my own bed."  He goes through these periods of time where he just gets overwhelmed with everything and becomes very emotional. It's completely heartbreaking watching/hearing his raw emotions just pour out.  Because of where he is in his healing, you can't rationalize with him or say anything that makes him feel better. Very tough time to be a parent...

About half an hour later and after he had calmed down, Jake got a very special visit from his 4th grade teacher. She is moving out of state tomorrow and I knew how much seeing her would mean to him. She had been on maternity leave since early May and Jake had really missed her being at school. They had a really nice visit and he got a bit annoyed that I was doing more talking than feeding him the ice cream she'd brought, so he took the spoon from me and fed himself. For a long time after she left, he talked about her coming to see him and the angel her mom had painted for him. We are really going to miss her. While she was here, Jake made a special point to tell her to thank her mom for making him the angel.  What a sweetheart he is.

They also started giving him some high calorie liquid drinks today to start working towards getting enough calories orally so that the feeding tube can be removed. That will be another wonderful milestone, and can’t happen soon enough.

Specific Prayer Requests:

1. Continued progress in Jake's ability to sleep
2. Success with the liquid calories so we can take out the feeding tube
3. Peace and strength for Jake

Mmmmm

Jake passed his swallow test this morning and now gets to drink and eat pureed food - Hooray!!! His first food was applesauce, followed by apple juice and some graham cracker. We of course had to document this on camera, you can watch it here:

http://www.youtube.com/watch?v=_g6qHMdGxWY&feature=youtu.be

First stop after therapy was to get ice cream, excuse me, Gelato, as I was corrected by my son. "Mom it's not ice cream, it's Gelato, there's a huge sign that says so." We then ordered pureed pancakes with maple syrup for lunch and Dad brought Jake the Chick-fil-A lemonade he'd been talking about drinking.  It will be a little bit longer until he can take in enough calories orally so we can take out the feeding tube, but this was the first step. All the other stuff today with his agitation/fixation/lack of sleep doesn't seem as big of a deal when you see him being able to eat and drink. Overall, great day!

And the funny Jake comment today:

Uncle Ryan was pretending to eat Jake's leg trying to make him laugh, and Jake says "You can't eat my leg, that's a form of cannibalism."

Meltdown

I feel so bad for Jake, as he is so tired and still isn't sleeping much. He's so exhausted, he's almost delirious. The poor kid had a total meltdown late this afternoon for about an hour and a half crying and upset because he was thirsty and doesn't understand why he can't have some water. We are giving him sponge sticks dipped in water, but it's just not enough. He also kept saying "It's not my fault" which of course it isn't. And with the fixation mode he's in, he just keeps thinking about and saying the same things over and over. It's such a horrible feeling when you see your kid going through this and can't fulfill such a basic need as giving them water. We are hoping and praying that we can have the team give him a swallow test tomorrow to see if he's swallowing properly and into his stomach instead of his lungs. While his neck has gotten stronger already, I'm not sure it's strong enough yet, but we're hopeful.

During the middle of this, a volunteer brought her dog by as part of the pet visitation program. Blondie was a gorgeous soft Collie and seemed to help for a little while until it made Jake start missing his own dog, Molly. Then the tears and upset continued. 

Jake got a new bed yesterday called a Pozy bed, which is a basic hospital bed but instead of rails, has a tent-type thing that goes over it and can be completely zippered closed. Its purpose is two-fold. One, it's supposed to create a cozy space and two, it keeps him from wiggling his way out of bed. When the nurse saw how much he was moving around the bed now, the concern was that down the road he might try and climb out and hurt himself if we weren't watching. I had climbed in bed with him trying to calm him when he was so upset and that's when my Dad got this picture.

To lighten things up...the hospital provided us with a “sitter” again this evening to be in the room with me and help out with Jake.  Her name is Virginia and we’ve had her a couple of other times, and have been very pleased with her. Tonight while she was here, Jake calls to me and says "Mom, Virginia is keeping me awake with her cell phone because she's texting.” (Which she wasn't at that moment, she'd checked her phone earlier when I was sitting with him.) You never know what that kid is going to come up with!

  

Specific Prayer Requests:

1. That Jake does well on the swallow test so he can start eating some food.

2. Continued strength for all of us to get through this phase of agitation, restlessness, fixation, and sleeplessness, which we are told can be the most stressful and difficult part of the recovery process.

Sweet Loving Jake

I hadn't intended to post again today, but am amazed at the improvement in Jake's speech just since yesterday and wanted to share. He continues to get louder and is about at half his normal volume unless he's tired, then he gets much quieter. When the speech therapist came this morning, she had to completely reset their goals since he's already made so much progress . He doesn't have a lot of inflection in his voice yet, but unless he's really frustrated, it's all said with a very sweet tone. It's so nice to hear him talking again. Here are some of the things he was saying today:

• I didn't like that sitter last night, she was annoying (the hospital provided someone to come and sit with Jake in our room last night to help when he got restless so I could get some sleep)

• I love you mom, I wouldn't trade you for anyone.

• The therapists made me work too hard, I was sweating.

• I miss Haley and T (his two favorite nurses from ICU), they washed my hair a lot.

• Mom I just want to eat some of the food you or Dad make

• Thank you for taking such good care of me while I'm in the hospital.

• My right butt cheek is itchy, only my right, not my left.

• I want my bone flap back, I don't like that it's missing.

• Dad are you going to be my "sitter" tonight? (and "sitter" was said with air quotes, so funny)

• I didn't mean to pull out my tube, I was itching my nose, it was an accident.

• Don't be weird Dad.

• Thank you for taking me to the hospital.

I was explaining to Jake a little more about why he's in the hospital, how long he's been here, that 4th grade is done, etc. I asked him if he remembered the night we were getting ready to go the carnival at the school. He says to me "Yes, I was outside and my head started hurting and I came in and told you I had a bad headache." I was stunned. I didn't think he would have remembered. I then filled in the blanks on a high level and that's when he thanked me for taking him to the hospital. Love that boy to pieces.

I was a bit overwhelmed this morning, but tonight am again so thankful to have that little boy in my life. Underneath everything going on, he is so sweet and loving. I got hugs all day today from him (I think part of it was a way to get to take his arm brace off, how can I say no to "Mom, I want to give you a hug"). My tank is refilled, my battery is recharged, and  I can’t wait to see him again tomorrow.

Fixations

I had not prepared myself for this part of Jake's healing process. I've been working so hard to take things day by day, I didn't look forward enough to see how different this part would be. He's not sleeping all that well, he's fixated on things, can't be reasoned with and he has periods of high restlessness.

It became obvious pretty quickly yesterday afternoon that Jake is going to need CONSTANT supervision when he is awake. Someone needs to be sitting by his bed, redirecting his hands, making sure he doesn't wiggle himself off the bed and calming him. The more he gets the sedation drugs fully out of his system the more alert he is. While his right arm was restrained, I stepped away from his bed for less than two minutes to get my water and he wiggled himself down enough to pull his feeding tube out, again. With the increased movement in his head and his hips getting stronger, he can pretty much move himself to wherever he needs to be to do what he wants. We're alternating the restraint with a brace that doesn't allow him to bend his elbow. While I detest both of these, we have no choice because he goes straight for that tube every time. The problem is both of these forms of restraint add to his frustration, which I totally understand.

He's also becoming very fixated on things. He overheard Todd and the surgeon talking yesterday morning about his bone flap (the part of his skull they took off). ALL afternoon, he would push on his head and say it was squishy and he wanted to know when he would get his bone flap back. I would tell him to be very careful pushing his head and that I wasn't sure when he'd get the flap back, he had to finish healing. He'd give me a very sweet "ok," then we'd go through it again a few minutes later. That alternated with "can you take this off" (arm restraint) and a few other complaints/questions all day long.

The hard part about being out of the ICU is having the nurse there to step in when you needed help moving him back up in bed, a quick break or to grab some food. You could motion to her though a big glass window and she would come right in and help. Here each nurse has 4 patients and you have to buzz them when you need something and it feels much more like you are bothering them. They told me last night that they look to parents to take on as much care as they are comfortable with. We've all been very hands on, but there are things I just can't do myself (like move him up in bed).

We've been told this is all part of the normal healing process from a brain injury and is just a phase. I'm just hoping we have the stamina to outlast it. To end on a positive note, he is starting to get a little louder when talking, so every 10-15 words is closer to full volume.

Day 21 - Bye Bye ICU!

It's hard to believe we've spent the last three weeks in the ICU. The staff at Children's is truly amazing. There are a few nurses and doctors I've become very fond of and, as strange as it sounds, will miss seeing on a day to day basis. I will miss having a dedicated nurse who's only job is to care for Jake, however, I'm very thankful he's moving beyond the need for one. Leaving them means we are moving onto the next phase of Jake's journey, so that is fantastic news!

He is moving up to the 6th floor, which is the rehab floor, and will have intensive therapy twice a day with OT/PT and Speech, probably for the next 8-12 weeks. He has made tremendous progress over the past three weeks but we still have a long way to go.  We are amazed at the effect of just being bedridden has had on his body, as he is so weak....we had not anticipated that.  He will be on a fairly regimented schedule which I think will be really good for him and give some structure to his days.  I hope the move and change of scenery will help him.  He's still sleeping very little and wants to know when he can sleep in his own bed.  We've been explaining to him what's happened at a pretty high level, but he just wants to get out of the hospital and back to normal, and I can't say I blame him. Last night, Jake told Todd that he "wants to wake up from this dream."  It broke my heart.  As an adult, I have a hard enough time wrapping my head around all of this.  It's even more difficult for a 10 year old to understand when he's had brain injury, been on sedation, drugs, etc. However, I keep reminding myself how far we've come already and I am thankful for his successes each day. We are looking forward to many more successes in the coming weeks as he continues through his recovery.

I wanted to take a minute to thank everyone for all the wonderful comments on the blog and Facebook as well as the prayers and support we've received. It really helps to read through them when we are having days when our tank is empty and needs refilling.

As soon as he's ready and we figure out his new schedule, we'll let everyone know about visitors. For now, we need to keep things as calm as possible.

Specific Prayer Requests

1. Continued healing of Jake's throat. (While he's talking more, he is still very horse and his throat is still recovering from the breathing tube).
2. Continued strengthening of Jake's neck so he can begin eating solid foods.
3. Help for those who care for him to come up with creative solutions to make the feeding tube more bearable. 
4. Stamina and strength for all involved as he starts the rehab phase