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!