Day Forty-Five

Al reported that everything went fairly well overnight. The nurses did report a fever so they are concerned about the sudden fever and wanted to monitor it throughout the day. Once I arrived after dropping Nathan at school I met with Dr. Bookland (James' neurosurgeon) and we discussed that it would be best to have James spend some more time in the hospital based on the fever and there was a little more fluid collecting in his head and face than he'd like to see. I was in completely agreeable to this as we are in no hurry to get home. We want James to be ready. 

Shortly after speaking with the doctor the PCA came in to take James' vitals and he was extremely agitated at the idea of it. He started screaming and crying so hard that a spot in his incision began to bleed steadily. The nurses came and gave it a temporary bandage and then we were playing the wait and see what happens game. Neurosurgery was alerted to the issue and they were involved in the plan of seeing how the bleeding goes. After bleeding through two sets of bandages the Neurosurgery PA-C made a page to Dr. Bookland to see how he wanted to proceed. We did some pressure holds to the area and it seemed to slow the bleeding. We held off on doing another stitch in the area in favor of a pressure dressing. The application of the dressing was less than fun for all involved and in the room but has seemed to stop the bleeding. They also scheduled another CT Scan to take a look and make sure there wasn't an increase in fluid happening in addition to the bleeding. 

He also had a visit today from a therapy dog named Annie. Annie was super friendly and full of kisses for James which is just what he needed today. 

The CT Scan looked good, there weren't any concerns from what they saw. So they decided to leave the pressure dressing on overnight. However they decided to hold his breakfast for the morning in case they needed to perform a procedure such as a lumbar puncture to remove some of the spinal fluid collection in his head and face. 

James was very restless just prior, during and after the CT Scan and complaining of stomach pain and some head pain. We tried to get him to settle in and rest and he was just unable to get comfortable. He ended up getting sick, which he then felt well enough to take a nap, which is what he needed. 

Now the plan for the night is to manage his pain, make sure there's no further bleeding and hope the fluids in his head go down with the pressure dressing. Hoping for a fever free night and my little buddy to have a better tomorrow. This has been the toughest day so far (other than day one of course). 

Day Forty-Four

Today was a super busy day, but a good one. In the morning they did a CT Scan and it looked good, so they decided to take the surgery drain out. They gave James some "happy" medicine for the procedure so he wouldn't remember anything about it. The removal went smooth and James had no issues. He was up and happy about two hours after the procedure. During the recovery we had a visit from the State Police and they brought a gift for James to enjoy once he woke up. 

Once he was fully recovered from the procedure medication the staff from physical therapy and occupational therapy came to do an assessment on James to make sure there were no deficits after surgery. They brought him for a walk down the hall and then to the stairs to see how he would do. There were no issues, so much so that he had the girls chasing him up the stairs after him! So we were able to check that right off the list!

Since James was doing so well they downgraded his status from critical and put in the transfer order to move him upstairs to a regular room. The move went well and once we were settled in we hit his favorite place...the playroom!  We played for a while until Al and Nate came, then we played some more!  Al spent the night so I could head home. We had to all leave James for a little to switch around cars and while we were gone James fell asleep waiting for Al to come back. Today went really well and they've discussed several times sending him home tomorrow. We'd love that. What a fast turnaround!

More tomorrow. xoxo

Day Fourty-Three

Today was the big day. Reconstruction surgery. We arrived at the hospital at 7:40am to begin the pre- work-up. We got James all dressed in his hospital wear, talked with the surgeon, child life and the anesthesiologist. After we discussed the plan for surgery James got to pick out his "ride" to the operating room. He chose a pink Cadillac (power wheels) as his vehicle of choice. I got all my gear on and we head down the hall to the operating room. I helped James into the table and was able to stay with him while they used the mask anesthesia. I left him around 8:45am. 

The surgery was approximately 3 hours and went fairly smooth. The did run into a little adhesion when getting ready to replace his skull. The adhesion happened to be in an area that is linked to motor skills so the doctor made a decision to leave the scarring in place so as to hopefully not affect any of his motor function. I was able to see James by noontime and he was resting comfortably in the PICU. 

We were reunited with some familiar faces which was even more comforting. They all seemed very happy to see James again and here about how positive his recovery has been thus far. After about an hour or so James started waking from the anesthesia. He was scared and not sure what was going on, he was quick to tell me that he didn't want the oxygen mask or the blood pressure cuff on anymore. He tried to get them to take out the IV and the other monitors but he didn't succeed there. 

The rest of the afternoon went pretty well. He was awake off and on. We talked quite a bit and he had some food and drink. All very good signs that make the nurses and doctors happy. The main goal for James right now is keeping him comfortable, as this surgery comes with its fair share of pain. He has had a dose or two of morphine today as well as some Tylenol. He is also on IV fluids, antibiotics and the anti-seizure medications. 

Tomorrow morning they have a CT Scan scheduled to take a look at everything. They'll make a decision as to if they will remove the wound drain as well. We are thrilled to see him back to himself and look forward to what the next days will bring with the hopes he'll be home with the whole family for Christmas. 

Thank you for your continued prayers and I will continue to post this week with his progress!

xoxo Jenn

Days Twenty-Seven - Thirty-One

Much of the same around our place since my last post. We're all settled in with James' new tent bed. He seems to like it and doesn't try to get out on his own. So I'd call that a success. He calls for me each morning as soon as he wakes up (usually 7am) and tells me to put his helmet on. Then he's off to the races-which usually means running into Nathans room to wake him up. 

Today, December 6th, we had our follow-up CT Scan and Neurosurgery appointments. James sat like a rock star for his CT Scan- no sedation needed and he was perfectly still, following radiology's instructions to the letter. As soon as we were finished Kelly, our radiologist, rewarded James with his "prize" for being so good. One of the office staff ended up giving him a secret prize-a giant teddy bear-that's almost as big as James!! We then head over to the neurosurgeons and they reviewed his scans. Everything looked really good, all of the swelling has gone down and James healed up really nicely.  The doctor went over the films with us and showed us where the bone was removed and where the injury is. He discussed with us that the portion of the brain that was injured is the part that controls speech.  He eluded to the fact that he was surprised at the fact that James was speaking due to the severity of the injury. I assured him that James is most definitely speaking at home (although he refuses to speak to Dr. Bookland - no matter how hard he tries). There is a pocket of spinal fluid on the side of his head, but that was to be expected. The surgeon says the fluid did a lot of the prep work for him and we're in the perfect window of time to do the reconstruction. He did say the tricky part will be piecing the fractured pieces back together again.  The best thing is for his original bone to be replaced rather than any other material. So they will use that first and see how his body reacts. There's always a chance for an infection or rejection when doing the surgery as well as seizures. But he will be closely monitored after surgery in the PICU. the surgery is scheduled for Monday, December 19th, most likely first thing in the morning. They are hoping to have him home with us for Christmas, but we told them we are in no rush, Christmas can be celebrated later if we happen not to be at home. Obviously all of us being together is the most important part, everything else will fall into place later. 

Day Twenty-Two - Day Twenty-Six

I haven't posted for a bit because not too much has been happening here. Which is good news, right? James has been doing really well. We've noticed that since coming off the Keppra (anti-seizure medication) that he's been speaking much more. He's still fairly quiet around anyone other than us, but with family he is coming out of his shell much faster.  We have a speech evaluation on Thursday December 1st to reassess where he's at and if they recommend further services. 

His speech evaluation went well. They did a Clinical Evaluation of language fundamentals. They looked at his receptive language as well as expressive. He did fairly well on his receptive language based on his age - observations related to understanding words, sentences and following directions followed by 1 step directions answering yes and no questions. His expressive language was not as strong as he only used single words and at times repeated words said by his communication partner and his speech was low in volume volume and at times reduced intelligibility. They've recommended speech therapy once a week for 30 minutes for at least three months with the possible need for additional therapy in school. We agreed with their findings and look forward to his progress. 

His net bed finally came. I set it up tonight and got his room as settled as possible. He seems to like it and looks excited to sleep in it. I however am a nervous wreck about him sleeping without me in his little tent. That thing is super secured, filled with pillows to protect him and zippered up tight for the night. Hopefully I can sleep-I guess I have to let Al sleep in the bed again haha. 

Although James' recovery has been nothing short of a miracle, my emotions get the best of me daily. Every time I answer the question "how did it happen", I'm able to answer strongly but lose it when I'm alone later. I cry, I cry a lot. I relive that day over and over in my head. I worry about Nathan and how he's processing all of this. Occasionally he'll say things like he wishes dad didn't build those stairs or he should have been there to catch James. I remind myself each time that my mind goes dark that it was exactly what it's called, an accident. It happened and James is not only safe, but home with us. I bring myself back from the tears by reminding myself that the how's, what ifs and the could ofs don't matter. The only thing that matters is that we were given a second chance with James. We've come so far from where we were on November 5th and if I've learned nothing else it's to take NOTHING for granted. 

I'm looking forward to breaking out the Christmas tree and decorations this weekend. Christmas means a little more this year too. Thanks for following and the continued support and prayers. Our next big appointment is Tuesday. James has a CT Scan scheduled to have a look at the swelling and then a neurosurgery followup right after where we'll hopefully know more about possible date for reconstruction!

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.