Day 20 - Evening

Sorry for the late post, I intended to post while Jake napped today, but that never happened! He fell asleep around 2:00 and I ran down to heat up my lunch and when I came back he was awake  and that was the extent of his nap. I'm shocked he's not sleeping more with OT/PT twice a day and the mild sleep aids they are giving him.

I made it to the hospital today in time for his 2nd therapy session. It was so cool to see how much progress he's making already just a few days in. He sat for almost 10 minutes on the side of his bed with just some assistance holding up his head. He's now also able to turn his head while lying in the bed. Once his neck is stronger he can start trying solid foods so it's something they are working very hard on.

Speech therapy was right after OT/PT and the clarity with which he was speaking was amazing. I think it's because he'd been sitting up and had got in some good coughs to clear his throat. He said the full ABC's, counted to 10, said Mom, answered what his favorite food was, knew his birthday, grade in school, answered some math problems and several other things. He was still very quiet but very clear. So cool!

He was still busy today but not as agitated as he has been, except during feeding. They changed his feeds a few days ago from constant drip to meal time feeds to try and get his stomach stretched. We are thinking when food is going in the tube he's more aware of it due to the pulsing of the drip line and the slightly enlarged size due to the food going through. He must have asked me 10 times to please take it out, poor kid. Other than during that time, he was fairly chill which was really nice. He wrote me a note shortly after I got to the hospital "When can I see Luke?" Luke was coming in after camp today and Jake was so excited. It was a great visit and Luke was equally excited since Jake was more alert and able to talk to him. Luke got really good at getting the wipe-board when he couldn't quite make out what Jake was saying.

With Jake's increased restlessness the past few days, Todd is staying tonight at the hospital and I'm staying tomorrow. Jake wrote to him "I am excited to hang out with you tonight" so I think it was a good decision. :-)

Day 19 - Frustration

One of the nurses mentioned yesterday that Jake is in the "Acute Phase" which is part of the healing process between being critical and not quite ready to be officially in the recovery/rehab phase. He's much more aware of what's going on, he's irritated he can't do what he wants (like pull the heart rate monitor off his chest) and sick of being in bed. The scar on his head itches, his groin itches where they took out the central line and he's just generally agitated. I think he's also really frustrated trying to talk to us, there are things we get like "my feet are cold" or a "thank you" to the nurse (love that he still has good manners!) and there are things we don't. He was grimacing and frustrated for a good 10 minutes before we realized he wanted the head of his bed down. As the nurse said "this is the part they don't show on TV." It's really hard because there are limited things we can do to help him pass the time and keep from from pulling at everything he needs to leave alone. We've been reading to him, he's listening to music and I found he likes silly putty, it's good at keeping his hand busy. I have to be honest, it can be exhausting at times since he's sleeping so little. Our mild mannered, rule follower is currently MIA and I can't wait to have him back, I'm not used to this defiant side of his. :-) I'm sure it's equally frustrating for him to have all these things going on in your head that you're trying to get out of your mouth and people can't always understand.

On a positive note, it's amazing how quickly all of his meds/monitors have gone away. At his peak, he had all this plus one more pump on each tower for a total of 10 pumps (I didn't have a picture of all of them), an ICP monitor for his brain pressure, heart rate monitor, blood pressure monitor, the ventilator and at times an EEG monitor for his brain waves.

Today he's down to three pumps...feeding pump, straight saline and magnesium which is to help prevent the vasospasms in his brain. That's a 21 day treatment that should end on Friday and be his ticket out of the ICU. He still has his blood pressure and heart rate being monitored. The pump you see on the right was left "just in case he needs some IV meds." They also took out one of the PIC lines in his upper arm this morning. So we're down to one PIC line in his left arm, all other IV's are gone too. Progress!

Day 19 - Morning

Last night Jake continued to be very restless which is a combination of discomfort from withdrawals, not being able to see or speak as well as he'd like and from being in a hospital room the past 19 days. He's in the final stages of withdrawals from weaning off the constant drip sedation and medication so it’s making him itch all over.  However, as of this morning both of the constant drip sedations have been removed so the discomfort should hopefully sub-side over the next couple of days. 

Around 2am he was overly restless and agitated and I couldn't make out what was wrong.  He was trying to speak but I wasn’t able to understand him so I grabbed the dry erase board.  On the board he scribbled "can we go to the car."  Poor kid wants so badly to get out of here but this is the best place for him.  This morning the doctor said he will begin more intense PT and OT since he’s no longer on the constant drip sedation. This should make him really tired and help with his sleeping moving forward.  

It’s so nice being able to get excited about him starting rehab vs. worrying if he is going to get through the day.  He’s made tremendous strides the past 19 days and I look forward to every new day because I know he’s that much closer to a full recovery.

  

Please continue to pray for him because it’s definitely helping him get through this.

Prayers for Today

1.  Give Jake the patience and strength to get through his rehab the next several weeks

2.  Vocal cords continue to heal so it's easier for him to communicate how he's feeling

3.  With PT and OT movement continues to improve on left side

4.  His discomfort subsides so he can sleep better

Love,

Uncle Ryan

Day 18 - Evening

Just a couple updates on this afternoon/evening. Jake is now staying awake a good portion of the day (and night at times!) with short 30-45 minute naps here and there. He's got his left eye almost all the way open and his right eye part way open (its getting more and more open each day.) His eyes are quite dilated we're told due to a couple of things. One, he's coming off all the meds/sedatives and two, his eyes are just getting used to taking in everything after being closed for so many days. His pupils are very reactive to a flashlight and we're told it will just take a little time for them to self-regulate. I was wondering how much he was able to focus with the dilation and got my answer this afternoon when he wrote to the Dr. "When can I see?" He must be able to see up close since he's writing some.

His right side is in constant motion when he's awake. They've given up trying to position him certain ways because he wiggles all over the place. And that hand of his...he pulled out his 3rd feeding tube today while three of us were standing there! This picture was taken before the new tube was put in place with quite a bit more tape. :-)

The highlight of my day was a few more words this afternoon. I had just given him a hug and told him I loved him and I got a very soft and horse "Love you too." Being able to truly hug him without worrying about knocking something loose was such a joy but hearing that was all this mom needs to keep plugging away. He also gave his nurse the first smile I've seen with actual upturned sides of his mouth. Can't wait to see his full smile again.

Day 18 - Communication is getting better

Wanted to post a quick midday update. Jake's communication is starting to move beyond thumbs up and fists for yes and no. Today he wrote on a wipe-board "when will I get my freedom." He is really starting to hate being in bed and having his right arm restrained but we have no choice, he's too busy. He pulled out his feeding tube twice this morning when left unattended and unrestrained for just a few seconds.

He also said "Dad" and "Hi" and attempted "Happy," they were all very quiet but he said them. I was showing him the video from the percussion performance he was in back in May and then showed him a sheet the therapist gave us with different emotions and pointed to Happy and Sad. I wanted to make sure watching the video didn't make him sad since he can't do that right now and he said "hap." Pretty awesome.

He is also showing more movement on his left arm, it's small movements but movements nonetheless. If we bend his arm, he'll push it to be straight.

Day 17 - Evening

Coming off the breathing tube has sent things into fast forward motion. Just today the following happened:

• one of the drip sedation meds was turned off
• the other sedation med was cut back and should be gone by tomorrow
• we had our initial therapy session with OT and PT
• his oxycodone dose was cut to 25% of the dose he had yesterday
• the oxygen tube was taken off his nose
• one of the IV's that was monitoring blood pressure was taken out
• all remaining IV fluids are now going through the PIC line in his left arm
• some of his meds that have been on drip were moved to oral (via IV for now)
• Jake was more awake and alert the majority of the day
• his food intake via the feeding tube was increased

Whew, that's a lot for one day! I think for me, the biggie was just seeing how well he was doing breathing on his own and being more alert. A close second was the report from OT/PT. During the initial assessment, they were overall pleased. He was trying to steady himself while in an unsupported sitting position, he had some movement of the left arm and lifted the left leg from the knee. These were reflex actions, not necessarily on command, but they were pleased with what they saw considering he is just getting off sedation and has been lying in a bed for 17 days. We have not had an assessment yet with the speech therapist.

I also wanted to let you know that at the suggestion of a friend, I added a facebook page to make it easier for people to know when we post an update to the blog. If you want to "like" the page, it's www.facebook.com/UpdatesOnJake

Day 17 - Morning

As Dana mentioned previously, the extubation was a huge milestone yesterday.  It felt really good for her and Todd to share the good news with everyone.  The next goal is to ween him off the constant drip sedation and further reduce his medication so they can truly assess his status.  At this point, we really don't know what deficits, if any, he has. They use deficit to refer to any loss of movement, speech, and things like that.  We are confident through rehab Jake will gain back anything that he has lost since the injury. The poor kid has been laying on his back the past 16 days highly medicated and sedated.  Plus he's had a breathing tube down his throat.  I think anyone would need a little time to get back to 100% after that.

At first, we were hoping this would all be over and we would have Jake to 100% within a few weeks.  Unfortunately, that's not realistic time-frame but that's okay because Jake will get back to how he was before the injury.  For now, all we can do is focus on the positive things that happen each day and continue praying for Jake.  We all believe in our hearts that everyone's prayers are continuing to help Jake make progress so PLEASE keep them coming.

TODAY'S PRAYER REQUESTS!

1. Jake is not in pain and has the continued strength and patience to get through this

2. Vocal cords do not have nerve damage and he'll be able to speak soon

3. Movement on left side will come back with rehab

4. His body responds well to lower sedation and medication

Much love,

Uncle Ryan