Day Twenty-One

Another early night at The Longs turned into a lazy morning for at least me and the boys. We got up later than usual, then had a quick bite for breakfast because Al's mom was picking Nate up to do a Home Depot Kid's Workshop.  James and I spent the day around the house then we had a visit from some friends. Great day today. Complete with some super adorable Zootopia dancing!

Now we're off to bed!

Day Twenty

Laid back day at our place today, last night was tough sleeping for James he seemed awfully restless, which means the same sleep for me. Yawn. 

The kids and I hung around the house for most of the day, then head over to Laura's place to surprise celebrate Al's birthday. He was scheduled to stop over there after work to do a few things, so she had us come over for dinner to surprise him. It worked out and he was surprised!  Simple and way day for us, now we'll head to bed since the little guy had no nap today and is getting a little crazy right now. 

Day Nineteen

We had another good night last night. No sleeping issues. Our morning was pretty typical here (standard noise levels and not leaving enough time to get ready and leave the house). 

We head to my parents house for Thanksgiving dinner. Unfortunately we all had to split up for Thanksgiving this year, we were hosting until James' accident happened and with all that was going on and the possibility of James being in the hospital for another month we had to make a call on what to do. That call ended up being a split dinner since my parents had already bought all the fixings for the day to cook here, but their place being far too small to host everyone. Then when we were sprung unexpectedly from the hospital just a few days from Thanksgiving it left us having to make the tough decision of what to do. The final decision ended up being dinner at my parents house and dessert at Al's parents house. That allowed us to be able to connect with just about everyone on Thanksgiving. I'm hoping Christmas doesn't present these same decisions for us. 

The day turned out well and the kids seemed to have a good day. The meals, desserts and company were great. Tomorrow will be a more laid back day for us. 

Hope everyone had a great day with family. 

Day Eighteen

Another good night at The Longs! We all got some much needed rest. 

Today was the big staple removal appointment that we've been looking forward to. They made the appointment in the sedation services area so that they'd be able to give James some medication to relax during the procedure. I was given instructions to have James not eat or drink for 12 hours before the appointment, which is a tough go for James as he is a grazer at home (pretty much eats an endless supply of cereal and crackers during the day). I had Nathan eat his breakfast in his room so James wouldn't see him, then we drove Nate to school, then we went to Target to walk around and waste some time. We had to stop home for about an hour where it really started to get tough. James kept asking for food and I kept having to push him off. He was definitely getting hangry!

We arrived at our appointment and Nella the APRN that was going to take care of the removal saw us and said she'd get us in early. She also asked if I thought James would sit for the procedure without being sedated. I said I wasn't sure but I was game for whatever she wanted to try. We went into the room, they took his vitals and we went over what medication would be used if needed. They were going to use a nasal mist that took about 7 minutes to become effective and it would just make James relaxed and giggly. Also he wouldn't remember much if anything about the procedure. Nella came in with a Duplo Lego set for James as his prize at the end. He held the box and she asked if we could just give it a go with no medication, we could stop at any time and medicate if we needed to. Well, James sat like a champ. She removed all the staples (and we'd guess there was 40-50 of them - we never actually counted them) and 2 sutures. He didn't even flinch. Nella was so proud and brought him in a slushy as soon as she was done. He flashed her a little smile when we were done and said thank you. We were out of there as quickly as we came. I'm so impressed with this little guy!

The afternoon James loaded up on all his favorites and played with his new Legos. We had a great day. We're in bed sleeping right now-no nap today, so I'll catch up on my shows on my iPad for a while because 8pm is a little too early for me to sleep!

Looking forward to seeing family tomorrow for Thanksgiving, we have a lot to be thankful for this year. We try not to travel down the "what if" path too often, but occasionally we do and we are just so blessed that things turned the way they did. It feels weird for me not to be hosting Thanksgiving this year, but Al keeps reminding me that it is just too much of an undertaking after what just happened. I'll focus on enjoying the day with my family and keeping the day simple. 

Happy Thanksgiving to all. More tomorrow! 

Day Seventeen

Last night went well, other than poor James getting caught on my blanket at 3am. We're counting down the days for these staples to be removed! He has one that's still super loose. 

Drop off went well this morning for Nate, James went into school with me and had no issues leaving with me. No crying!! We ran a few errands then went home to relax until we went to pick up Nate. James took a little catnap on the way to school. When we came home it was tough waking him up, but I knew there'd be bedtime issues if I didn't. 

Overall it was a pretty dull blog day, but I'll happily take that. It's 9pm and we're all heading to bed. I think we're all sleep deprived!  Tomorrow is staple removal day. We head over to CCMC for 11:30am and they'll do a

Sedated staple removal. Which means I have to starve this guy out until the appointment. He is very much like me and doesn't handle being hungry very well. 

More tomorrow! 

Day Sixteen

Last night went much better than the night before. Mostly because James didn't have a nap-or at least that's what I think. He was purring like a loud little kitten just as soon as I shut down the lights. At least Al had a real bed to sleep in last night, he slept in James room instead of the couch. 

This morning I was really nervous about how drop off at school would go. I explained to James that he would be spending some extra time at home with mommy until his boo-boo is all fixed, but I know how much he loves school and his friends. We talked Nathan into being dropped off at the valet line so we wouldn't have to go into school, he reluctantly agreed. When we got to school the valet line was really long and I'm impatient, so I explained to James we would need to walk Nathan in, but he can't stay. He actually did really well. He asked to me carry him in and he clung tight to my neck the whole time so it was easy to go in and out. He did end up crying once we got back to the car to drive away. But fortunately recovered quickly. We did our old normal routine-grocery shopping. Then head home for some rest. 

James had a special visitor today, his cousin Michelle. He loves his extended family so much and although it was hard to see at first-he was happy to see her. Since his accident his shyness has been a little more noticeable and it takes him a little longer to warm up. But once he did it was all smiles and hugs. We'll have to sneak in some more cuddle time before Michelle goes back to school. 

When we went back to school to pick Nate up, James was exhausted from playing and visiting. He fell asleep just down the road from the house and was able to sleep through me taking him out, carrying him into school, putting him back in the car and bringing him into the house. Now that's tired! He didn't nap before this accident (well they tell me he did at school), but not on the weekends!  I'm sure he's still catching up on sleep and we've been going to bed much later than we would normally. 

We're set up the same as yesterday for bedtime tonight. The hospital confirmed that his net bed was ordered this morning so we'll just hope it comes quickly!

Day Fifteen

Our first night home with James was stressful (for me at least). I set up the bedrail in our bed, lined it with a pool noodle-anywhere there was metal and then made a pillow nest for James to sleep in. We settled into bed around 10pm and James was not into going to sleep. He wanted to play around - which was not happening - especially since he had his helmet off. I slept so poorly in anticipation that he was going to wake up, get out of bed and fall down hitting his head. It didn't happen, he stayed in bed and woke me up in the morning asking me to put his helmet on so he could go play. 

Our day went pretty standard. We had some things to do around the house. Such as switching around some beds in preparation for James' tent. Instead of purchasing a new twin bed we decided to upgrade Nathans bed to a full size bed. So there ended up being lots of work for Al. He broke down the toddler bed we had for James and then broke down the headboard and footboard for Nathans twin.  He then went to his mothers house and picked up the full size bed we had over there. I ordered all new bedding for both kids so that they both felt equally special. That's one of the things that is very important to us right now is to make sure that Nathan feels just as important. 

The loudness of our house is getting back to normal too. Me yelling at the kids, the kids yelling at each other then teaming up on me. Pretty normal stuff at the Longs. Nathan had the opportunity to go out with his Aunt Gwen to do some bowling. It got him out of the house for a while and also gave James some downtime. We all ended up going to bed by 10pm, since James' bedtime is my bedtime until that tent comes. 

I almost forgot! We decorated James' helmet today. It came out great!  I think he likes it, but we were already really lucky because he gives us zero issues about wearing the helmet during every waking moment. 

Day Fourteen

James had another good overnight with no issues. They were monitoring his heart rate overnight because it was a little elevated. But in the morning they reported it was fine. 

When I got up to the hospital James was playing cars with his PCA Clif. They were having a great time and James was all smiles. Dr. Bookland came in shortly after I settled in and asked if we were ready to go home. He said he felt very comfortable sending James homes and believed he would continue to thrive. In two weeks ( Dec 6 ) we would come back to have a CT Scan to have a look at where the swelling is, then make a determination on if reconstruction would be an option or if we needed to give the swelling a little more time. Right now Dr. Bookland is happy with what he sees, the swelling has gone down considerably and the wound is nice and soft.

James and I started packing up all the swag he picked up during his stay. Lots of new bears and dogs, cars and books. We had to make another stop in the playroom. I think he'll miss playing in there.  It's equal parts exciting and terrifying to bring James home. Although there really will be no difference between what he's doing at the hospital and home, at the hospital I felt like we had a safety net. A team of people just steps away to help us if something went wrong. I'm sure we'll be ok. The feeling is somewhat similar to bringing your first born home from the hospital, like you're never really ready. 

The hospital is ordering us a net tent bed to help keep James nice and safe at night. I'm hoping it will come in soon. Until then James will have to sleep with one of us in our bed. It's imperative that the only time he doesn't have his helmet on is when he is in bed. Fortunately he really doesn't mind his helmet-we ordered him some custom stickers to personalize it for him too. 

Went made another visit to the Family Resource Room before leaving. They were offering arts and crafts followed by lunch. There is no shortage of great things to do in this room. By 1pm we were ready to roll, Al and Nate came to help us carry out all our stuff. The nurses and doctors were all so happy for us. Happy for James' miraculous recovery. As we walked out the front door as a whole family I couldn't help but remember that just two weeks before, almost the hour, I was running in the door begging for help. Just two weeks before James' future had no promises, they couldn't tell me if he'd walk or talk again. Now we're walking out the door, with no motor skill deficits, from what we can see just some small speech delays. 

We've got another speech assessment on December 1st so they can review James' progress. James will finish his seizure medication doses at home, which were taken as a precaution. Dr. Bookland feels James' risk is minimal and feels the medication is no longer needed after this week. James will also finish up his medication to ease him off all the heavy narcotics he was on in the hospital. They finished up his morphine yesterday morning so he'll take Ativan to help with any withdrawal symptoms. 

I went out this afternoon and picked up a bed rail for our bed, then put all the extra pillows in my house around the bed for a little nest for James. I'm hopeful that everything will work out well and that every day I will be a little more comfortable with having James home. James will remain home with me during the day until they do his reconstruction, then he will be able to return to school. 

James' still has a way to go on his journey, but we'll enjoy every second of having him home. We're over the moon to have him home. 

Day Thirteen

We had another great overnight with no issues. Being off the monitors and on four hour checks have been better for James and Al's sleep. 

James and I started the day by driving around in his favorite truck and chair rides through the halls. We had an additional assessment done by a rehabilitation specialist to be sure there were no additional services he though James may need. James passed with flying colors on OT and PT siting no additional services at this time. Speech therapy followed his assessment working with him to help gain his confidence back while talking. I've noticed all the words are there. He just needs some confidence matched with practice to get back to normal. 

Around 1pm we headed off to physical therapy. They set up an obstacle course for him. Which included stairs, climbing into a little pool, climbing out, balancing and throwing. He cruised right through the course with ease. He did so well that his PT asked if he really had a fall with a serious brain injury. Kim also put a call into the office that made James' helmet so they could tighten it up a little. The swelling has gone down quite a bit and the helmet was on the loose side. We stopped in and they fixed James' helmet right up. Now it's the perfect amount of snug. 

James has been doing really well and there has been very serious talk of him going home. He doesn't require the extensive rehabilitation that normally accompanies TBI (traumatic brain injury). He would continue to have outpatient speech therapy and they would allow him to return to school with a one to one aide (wearing his helmet at all times of course). They would then schedule a surgery date at a later time to perform the reconstruction. The reconstruction would then be a 3-4 day hospital stay. Dr. Bookland, James' neurosurgeon, believes home would be just as good if not better for him now. 

So we'll continue to take it day to day and see what Saturday brings. 

Your prayers, positive thoughts and energy are working. Thank you!!

Day Twelve

Al reported that James had a tough time settling in last night and then ran into a small issue with one of his staples. The gauze in his hand ended up getting stuck on one of his staples. Fortunately Al was able to get him unstuck then called for help. The doctors answer for the night was to simply wrap his head in gauze until he morning when they'd probably take out the loose staples. 

When I came in I saw him all wrapped in gauze, his lead lines falling off and bouncing around his bed. The nurse told me the bandages would stay for the next week until the staples are scheduled to come out all at once. I expressed my concern (or more like told them it was ridiculous that sounded). The nurse was very patient and said he would page neurology again about it. When the PCA came in to do his weight she asked me to put on his helmet-which I found didn't fit with all the gauze wrapped around his head. So I refused to put it on. She left and paged neurology again. When the doctor came in she agreed on removing the wrap and lifted many of James' orders. He's clear to walk around with me, play in the playroom and even leave the floor (in his wheelchair). They are bringing in another assessment team to review his progress and make sure there isn't something else within his rehabilitation that they're missing and need to add. 

James' occupational therapist came to meet with him this morning and based on what physical therapy wrote from yesterday's visit and what she's witnessed herself she has decided to clear him.  Erin was amazed at how quickly he has recover and doesn't require her services. 

James and I continued to play for several hours while we had some visitors. By the time Kim (PT) was ready to play-James was ready for a nap! All this fun really wore him out so Miss Kim didn't get any work in today.

The rest of the day went well. After James' nap we had some additional visitors and cruised the halls some more. I bet we did several miles today. I should start wearing my Fitbit!

My emotions ran the roller coaster today. I feel like they've finally caught up with me. Matter of fact I tear up just writing this. I'm reminded daily how fortunate we are that James is ok and how this could have taken a very different course. My life has been changed by all of this and I know Al's has too. I am forever humbled by this whole experience and eternally grateful for all of the support we're receiving. 

Daddy's on duty for sleepover and we'll see what tomorrow brings. xoxo

Day Eleven

James had another restful night with daddy. He slept pretty much through the night with no major issues. Al was able to stay for breakfast with James until I could make it back for the day. It was nice because Al was able to participate in rounds (which sounded intense with how many people were here haha). So the plan as of this morning is that James is scheduled to have his staples removed next Wednesday. He will continue with his speech, occupational and physical therapies. The neurology team stance is that James will stay in the hospital throughout all of his rehabilitation which they are estimating to be approximately one month. At that time they anticipate that his brain will have healed and all swelling and possible infection will be gone allowing them to do the reconstruction. By waiting this amount of time it will also reduce the chance of his body rejecting the reconstruction. At that time once he's healed to the satisfaction of the neurological team he would be able to come home. As anxious as we are to have him home we completely agree with that timeline. The thought of taking him home and keeping his head safe is nerve wracking. The logistics are frightening when you really think it out. 

James worked with his occupational therapist this morning and did well overall. He began getting a little carried away in his bed and I tried to get him to wear his helmet. He wasn't having it. His feelings seemed to be very hurt by the feeling of it being a punishment (I'm assuming). James let Erin know when he was all done for the day, but overall I think it went well. It seems like the plan from here with OT is to have him doing some mat work to strengthen himself more. 

During our visit with grandma lunch came and we began to eat. His speech therapist, Jodi, came in to observe and see how he's doing. I'm assuming that he is doing well on the eating part so I'm wondering when we'll move on to working on his speech. Currently James is extra quiet, even with us.  This is out of character for him. We can tell that the words and knowledge is there but when he talks his voice is very small and it's difficult to understand what he's saying. Hoping that tomorrow we begin working on that. 

Physical therapy went very well today. When we were getting James out of bed and into his helmet so we could put him in his chair to go down to PT, he told us he wanted to walk. Kim was thrilled. She walked behind him to see how he would do. He had just had some of his medication so he was a little loopy, but did remarkably well. James decided they he wanted to do his PT in the playroom instead of the physical therapy gym. He started out by playing with Kim on the mat to wanting to walk the shopping cart. We took a long walk through the halls and he did very well. We went back to the playroom and James wanted to ride in the truck. We got him settled in and off he went. We traveled through the halls again and he did very well. Kim decided to clear James to walk with me by hand to the playroom where he was allowed to cruise the halls in the truck. She felt great about his accomplishments today and felt that with what she's seeing he may not need a months worth of PT.

 

The afternoon continued to do well. We played in the playroom together, cruised the halls and did some puzzles. It was a great day. I'm looking forward to what tomorrow brings. 

Day Ten

James had another good night. He got some much needed rest with daddy. Al has been a great sport about sleeping at the hospital with James this week. They spend some quality time together and James has the comfort of knowing one of us is here with him. 

When I returned to the hospital this morning James was sleeping and hadn't had his breakfast yet. He woke up shortly after my arrival, so we had breakfast together. Just after we began his speech therapist came to work with him. She observed how he was doing with breakfast, then worked with him on a few things. About 30 minutes after speech therapy left, occupational therapy came by. Erin worked with him the best she could but James wasn't really in the best mood. He was feeling kind of down this morning. They did some work on the iPad and she left some play-do for him to work on the strength in his hands. 

We took a break while Grandma Reinholdt visited. We are some lunch and watched a movie. Hanger Medical Equipment has been working hard on James' helmet. They came in 4 different times today to get it just right and I think we got it! Now James can leave his bed for PT and most importantly I can take him out of the bed to just hold him. 

Physical Therapy went well. Kim worked with him on walking. He did reasonably well even in comparison to yesterday. He is weaker on his left side and will need more rehab to get right side on board. The therapist says it's not from lack of strength so much as coordination. So that alone is a good thing. He has the determination and drive to get back to his old self. As I watched him during therapy I can see his brain is there his body just needs to follow. 

Hoping for another good night and some more progress tomorrow!

Day Nine

Al spent the night last night and reports that the night went pretty well. James slept for most of the night. This morning I arrived back to the hospital around 9am after dropping Nathan at school. James was having breakfast with an aide watching some cartoons. 

Physical therapy came to work with James around 11 and brought him out of bed to do some work. We sat on  a mat and tested out what kinds of things James can do. He was able to kneel, slide on his bum and reach with both arms. His PT Kim also helped him to stand for the first time since his accident. The first time he cried, mostly because he was scared. So Kim helped him feel more secure and tried again. He did fairly well for his first time. She then had him sit in my lap and he helped him stand to his feet and reach above her to put some toys into a box (with the help of her PT assistant). James did really well for his first true PT session. I feel like she will push him just the right amount and that Kim is a perfect fit for us. 

James took a break after PT for some lunch, where the speech therapist came to observe him eat. She was checking to see how he did while eating his lunch. Her plan moving forward is to work with him 3 times per week where she works on playing some games and building back up his speech. 

In between medical visitors we watched a movie and James got himself very comfortable. It was very close to normal back at home. It was refreshing to see he can still relax and be his silly self. 

After we finished the movie his Occupational Therapist, Erin came in to meet James. It was perfect timing because he just moved into his special chair with the tray. Erin had him do some work with the iPad to try and get some baseline information from me while also collecting some from observing him. He seemed to do really well. 

A little after OT finished James had a few visitors, which he loves seeing all the familiar faces. I can tell while they're visiting that he is enjoying every moment with them. Around 6:30, right after dinner was served  James laid back in bed and fell fast asleep. So deeply they decided to use some oxygen to support him again. The resident that was on staff this evening decided to take another chest X-ray to take a look at James' lungs. They still are full of lots of junk and they've upped his orders for respiratory therapy. 

Al is staying the night with James again, I'm hoping both James and Al get some rest. It's nice to sleep in my own bed but I hate leaving James, even though his dad is there. I wish I could be in two places at once. 

More tomorrow! 

Day Eight

James had a good night with some much needed sleep on his end. With his increased confidence James earned himself a fancy new bed to keep him safer than a standard hospital bed. The obvious concern would be him trying to get out of the bed and falling.  James' emotions have been coming through a little stronger than before his accident. The thoughts are that between the medication changes, neurological issues and possible frustration from not being able to do everything he wants. Being restricted is a huge hurdle for him. 

In the morning during rounds the main concern was how fragile James' lungs were. He needed oxygen the night before, just for a little extra support overnight. Once James was up they decided to give popsicles another shot. Dr. Comeau felt confident that it would be no issue and he was right. James downed 3 popsicles...no problem. They moved on to applesauce-he passed with flying colors. So he went from having only IV fluids in the morning to having a hot dog and fries for dinner. 

Since he did so well during he day and progressed in mere hours James was moved out of the PICU and upstairs to a regular room!! He actually ended up sleeping through the whole move upstairs.  James seemed to settle in quickly with no issues once he was awake. 

Al is spending the night, it'll be the first time I've slept at home since last Friday night. It's hard to leave but we're still trying to find the right balance for Nathan. We're working hard to keep things semi-normal for him. This past weekend he spent Friday night at Grammies, Saturday with Auntie Laura and Sunday afternoon with Auntie Justine. We got him home on the later side and I know he's going to be exhausted in the morning. 

Looking forward to sharing more progress tomorrow. 

Day Seven

Last night after Laura (my sister in-law) was kind enough to hang out with James and let me nap-Al stayed late to keep James company so I could head back to bed and get some more sleep. Our nurse Cheryl was great. She helped Al get comfortable and kept James company when he outlasted Al in the sleep department. Al was able to last until 1:30am - James made it until 5am from what Cheryl tells me. When I went to check in on James I saw he was sleeping and that Al never made it out of here last night.

The day went well for James, he sat in his chair again for another 2.5 - 3 hours. We played with his cars and I got some great words along with it. Go, yeah, mom. He settled into bed and was able to settle in for a nap that sadly only lasted about and hour. He was sleeping a little too good for the nurses comfort - his oxygen levels were a little lower than they'd like to see so we had to wake him. He still has a lot of junk in his lungs to work out so that was part of the problem during his nap.  His new nurse friend, Kara took great care of him today.  The possibly of moving out of the PICU is looking better and better. They are keeping a close eye on his lungs to make sure they are tip top before moving him. Neurology has given him the all clear on their end. I think they also would like to see him in his helmet prior to going upstairs. We thought we may have it today but no such luck. I'll rest easier once we have it for him. 

Nathan came to visit today and that was the highlight for James. He was so excited to see Nate. He said Nathans name too. Nathan was off to spend the night at Auntie Laura's house and James was sad to see him go. But we'll have him visit again tomorrow.

As the night progressed his words became more and more frequent. Letters, numbers, counting, and of course lots of "mom". The same thing that drove me nuts just over a week ago is the sweetest sound I've heard. We can see James' silly personality shining through and rapidly making its appearance again. His smile keeps getting stronger each time he makes it.

I can't wait to see what tomorrow brings!

         

Watching The Good Dinosaur in his chair. 

Day Six

James had a long night and keeping Yaz and I not only busy, but on our toes to figure out what he needs.  Lowering his pain medication dramatically during the day in the preparation to stop it completely proved to be a struggle for James. He was on such a high dose of the fentanyl that stopping the dose can cause withdrawal symptoms.  The doctors and nurses have been amazing managing any symptoms he has. James finally fell asleep around 3:30am after we pretty much stared at each order all night. Yaz sent me off to get some rest.

I came back in to see James around 7am and he was wide awake. He was awake and alert for most of the day. He had a combined visit from Physical Theapy, Occupational therapy and Speech Therapy to assess how James is doing and to get a baseline for progress and an understanding of where he was prior to the accident.  They sat him up with full support from the team, he was able to look in both directions with minimal issues, have full neck control and move his legs freely.  They introduced Apple juice with a straw and with a spoon.  He had difficulty with the straw and wasn't interested in the spoon.  They also offered him a popsicle, which he was very interested in.  He was able to stick out his tongue and take a taste.   The team brought him in a chair for him to sit in that keeps him super secure, but is great for him to use so he can sit up and be somewhere other than bed. They had him sit in it until he let us know when he was done, which was about 2.5 hours.  Considering how little sleep he's had, that was pretty impressive.  

                           

So onto the biggest news...Nathan had his first visit.  We had child life meet with him first to check in with him and see how he was feeling about everything.  We brought him in and he did very well. The only thing that seemed to bother him was the wound on James' head. Nate stayed for just a bit, but we intend him to visit again on Saturday.

Now if we can just James to sleep some more we'd be all set. I'm not sure if the medication is making him stay awake or it's just that he's been sleeping for 5 days straight. 

More tommorow, each day brings more and more good news. 

Day Five

Last night was very active for Yaz.  James was being weined from his pain medication to a much lower dosage and that caused for lots of outbreaks of him being more lucid.  They did another chest X-ray very early to take a look at how his lungs were clearing out.  They looked much better than yesterday so they decided to give it another go on removing his ventilator.

SUCCESS!!!

Around 1pm today James' vent was removed!  It was successful and he transitioned very well.  They removed his feeding tube, foley and two IV lines as well.  I got to hold James for the first time since Saturday and it was heaven.  I cuddled him for a bit them we settled him back into bed so he could get more comfortable
                                   
                                       

The afternoon continued on with many positives.  James continued to have more alert times where he was making purposeful eye contact.  He acknowledged a few of my questions with a shake of the head for no and yes.  He was alert when Al (dad) came in to visit and reached for him while Al was talking.  It was so awesome.  But James must have known I was feeling left out because just a little while later he said mom.  I don't need much more to make today hit my top 5.  

They have also begun fitting James for the helmet he will need to wear to protect himself while waiting for reconstruction. I am hopeful they will have it completed tommorow.  They also tell me they will be beginning PT and OT for him tommorow too.

As tired as I am, I don't want to leave his side.  I know I should get some rest because tomorrow brings some more miracles.  I cant wait to share them with you.

                                

Day Four

James had an eventful night, keeping Trisha his nurse, on her toes.  He sat up in his bed twice (which he shouldn't be doing) and opened his eyes for the first time since Saturday afternoon.  The nurses had a good laugh because him sitting up happened to match the exact time our new president was named.  We've agreed it was in protest to the news.  The day has been spent trying to find the right balance of medication to keep James nice and calm.  The balance has been tricky because some of the medication sedated him a little too well causing his pressures to drop.  When they lighten the doses it causes him to be too alert and he becomes very agitated.

They did another chest X-ray late this morning and while they were prepping to take the film he had the longest episode of alertness and agitation.  He actually ended up vageling (sudden loss of consciousness). He was alert with his eyes open, for much longer than times before, but also looked terribly frightened.  They made some additional adjustments to his medications to continue keeping him as comfortable and quiet as possible.  He seems to be going from zero to one hundred with no warnings.

The chest X-ray continued to show fluid on his lungs and they want to see that fluid go down considerably before removing the ventilator.  He was given some additional diuretics and sedation, since the new plan for removal looks like Friday. They are continuing his chest PT in hopes of getting his lungs a little less sticky.

Today has been nothing less than adventurous and full of movement from Mr. James.  His nurses Michelle and Brenden have been working overtime keeping James safe and calm. We've got our nurse Yaz back tonight.  She took great care of James on Sunday night.  Its great when we have someone working with him that's familiar with who he is and what his personality is like.

I'm hoping for a calm night so he can get some rest along with some progress for tommorow.  They began a feeding tube for him tonight, so I'm hoping that might help with some of the agitation he was experiencing.

More tomorrow and thank you everyone for your support!  We are beyond grateful.

Day Three

Today was a productive day with seemingly good news.  Overnight seemed to go well for his nurse Trisha, who was ready to accept all the challenges James was willing to put up.  Trisha let me know that he had a good night other than right around the time I walked in this morning (about 4:30am) while they were trying to do his chest x-ray.

James had an additional CT Scan first thing this morning, which showed less swelling than his scan on Sunday morning.  So what that meant for James is that his "bolt" (pressure monitor) and his drain could be removed.  I left around 8 am to bring Nate to school and returned about noon time and he looked like a whole new person.  No more bolt, no more drain and no more bandages!  He is beginning to look like James again.  When I came back to the hospital the room was full of nurses, doctors, respiratory therapists and specialists.  They were doing a test to see if James could also be removed from the ventilator. 

His chest x-ray very early this morning was to determine if his lungs were strong enough to be removed from the vent.  They were also looking for fluid.  They found some fluid on the left side of his lungs, but decided that if he did ok on his removal test then they would remove the vent.  He ended up falling asleep once he was allowed to breath on his own.  So they decided to leave the vent in for one more day and try again tomorrow morning. 

James has been a power house with them and it has been a continual struggle to find the right medications and the magic dosage to keep him calm and comfortable.  This afternoon they seemed to have found it.  They were able to re-tape his vent and get him a fairly good position to get in some additional rest.  They also began some respiratory therapy for him, matched with a diuretic to help flush some of the additional fluid from his body.  Jillian and Brendan had another full day of excitement with Mr. James.

Tomorrows plan is to re-assess his ventilator and see if we can take him off.  Once that happens we can wake him up and see what happens.  We are continuing to watch his movements, making sure that they are purposeful and he is in control of them.  The neurologist also is very interested in his speech.  As the portion of his brain that was injured affects his speech.  I can't wait to hear his voice again.  This morning I watched a video I took of him on Saturday morning just to hear his voice. 

The news continues to be promising and I just continually look forward to what comes next.  I've seen him come so far since Saturday night, I'm just in awe.  I continue to be overwhelmed by the kind words, prayers for James and our family, as well as the outpouring of positive energy coming our way. Please continue to pray and send your positive thoughts for James.  He still has a long road ahead.

I hope to bring Nathan to see James as soon as his vent is out, but in the mean time Nathan has been making some amazing things for James' room. 

Hopefully I continue to have great news to report tomorrow! xoxo

Day Two

James was stable for the night, his nurse Yaz gave us a great report on how everything went.  However that quiet and calm changed as James started to be much more active and his movements became much more frequent.  I left the hospital around 8am to go along with Nathan to school.  It was an opportunity to see Nate and also to have a conversation with the school about James.  I was dreading the conversation but was relieved once it was over.  Making sure that Nathan would have the support he needed during the school day was so important to us.  I can't even begin to imagine what is going through his head with all of this. 

After returning to the hospital later this morning, James' nurses reported a little action (he sat up for them-which he shouldn't be doing quite yet).  His episodes of movement continued to get more and more frequent throughout the day.  His nurses Jillian and Brendan worked tirelessly to keep James calm and find the right balance with his medications.  They had to use some paralytics at one point to allow him to get some rest.  They added some additional medication to his pain medications, to help keep him more sedated.  He's moving too fast for his own good right now.  So they need him to slow down just a bit.

In the afternoon I met with the neurologist and he said that everything he's seeing looks very promising and he's happy with what he sees.  He has scheduled for another CT scan for tomorrow morning and there's a chance they'll begin to consider removing his ventilator and his pressure "bolt".  Which is all great news.  Statistically the third day can lead to the most swelling, usually 3-5 days after the injury.  So I'm hopeful it won't be too horrible.  The fact they are considering lifting his sedation and removing tubes definitely helps me feel better. 

James has been keeping his nurses and me on our toes today.  I do my best to help while I'm here to calm him when he becomes agitated.  The nurses have been amazing, keeping me in the loop every step of the way.  Making sure I fully understand everything and have input.  It's wonderful.

We had lots of visitors between Sunday and Monday.  James has begun quite the collection of stuffed animals and toys.  He'll have tons of new toys waiting for him when he wakes up!

Everyone has been so accommodating and generous to us with their time and support.  The outpouring of love and prayers is overwhelming.  Knowing that James has all these wonderful people rooting for him and us.

We've chosen to hold off for a bit longer on having Nathan come to see James.  After speaking with Yaz this morning it really sunk in that it may not be the best time yet for that to happen.  I am thankful for their input.  They have expertise in this situation and I want to be sure we do the right thing for Nathan.

I think that's all for today, nothing really major to report.  More tomorrow!

From Auntie Laura

Big Eyed Pup From Auntie Gwen

Elmo - James' main man!
Little Ghost & Olaf from
Aunt Justine & Michelle
Little pup from Grandma

                   

Day One

To begin, I plan to use my blog to share James' progress and will post updates daily. I know as word begins to spread people will want to know how he's doing and how we're doing, this will be the best place to get this information.

The last 24 hours have been a whirlwind. Our family experienced the kind of day no parent ever wants to have. James had a terrible accident. He took a serious fall and fractured his skull causing pressure on his brain. He received emergency neurosurgery to repair the fracture and relieve and pressure and swelling on his brain. The surgery lasted about 2 hours, which felt like an eternity. The surgery went well and James was now resting comfortably. They removed a portion of his skull to allow for any swelling to take place. His injury is a left temporal parietal fracture which has a fronto-temporal parietal craniectomy in place. 

 

Overnight James did well, all his vitals remained stable with no real issues to report. This morning they gave him a follow up CT Scan and from what I'm told the swelling was less than expected. He did well throughout the day and has remained stable with no remarkable issues. He has been making purposeful movements, especially when he is agitated, such as any unexpected movement by the nurses. The nurses laugh that he goes from zero to sixty and he's even earned himself some soft restraints. 

 

Today has been a long day. A long one at the beginning of many is what I'm told. No one has answers on how long his journey will be or if there will be any deficits when he wakes up. I'm keeping my strength up as much as possible and looking forward to the small things like him opening his eyes, talking and most especially holding him.

Currently I am sleeping at the hospital nearby to James, while Al and Nate are home. We are trying to keep things as normal as possible for Nathan. He has yet to see James in his current condition, he saw him Saturday when we brought him in. Children's Medical has been wonderful working with him and making sure he understands what is going on. We plan on having a child services representative meet with Nathan tomorrow prior to seeing James for the first time. 

We're taking things day by day. Minute by minute.
More tomorrow. 💙

Just not quite ready to snap a picture of how he looks.