Hi everyone it's been a very busy, exciting and emotional time since I last checked in.
In August Spencer suffered with several more seizures. They actually had to call a code 66 because they couldn't get them to subside and his respiratory rate was decreased. I think the thought of having to leave the hospital was worrying him. I was at home when the hospital called. When we got there he was so doped up on anti seizure meds he didn't even remember us being there the next day when I came back.
He then got another UTI he can't seem to get away from them.
Before all that happened I managed to get away for a few days with my husband it was a nice break from all the stress but it seemed so strange to be somewhere without Spencer. That was the first time we had been away by ourselves in probably 10 yrs.
When we got back I came down with a huge attack of vertigo. I have meniere's disease and I haven't had a flare up in a long time. I was pretty much down and out for 2 weeks it was so awful. It ramped up my anxiety because I couldn't be at the hospital for awhile and I had lots to do in anticipation of my oldest coming home. It has lessened quite a bit but I do have to be careful on how I move around or get in and out of bed.
On September long weekend my oldest flew in from B.C. so we could finally meet Hope!!
OMG she is the sweetest little baby and has the most stunning blue eyes.
It was so awesome because Spencer was able to come home for the weekend as well and my other 2 boys too! We had such a great time and so many laughs. I'll add some photos at the end of my boys and Hope!
In September we got the funding approved for Spencer to go to the group home so we could begin getting his room ready and also start the transition for him to leave the hospital! The hospital and the agencies involved with the funding and group felt we needed to move slowly as anxiety and change makes Spencer very upset and causes seizures.
It was so strange because as much as we wanted to be out of the hospital we were sad and anxious to leave and start this new adventure. My therapist and staff say it's perfectly normal given how long he was in the hospital The staff as much as they were happy to see him be well enough to leave were sad because they enjoyed him so much.
It was a very busy time as we had to try and get his room set up in between my husband's job and him working every 2nd weekend. It was a lot of work and running around to buy all new furniture and set it up and bring stuff from the our house and the hospital but the end result and his reaction when he got to see his room was so worth it! I'll add some photos of his new room.
He went for a 2 day over night the first time to see how things went and if there needed to be any adjustments made with equipment etc.
It was so emotional leaving him there that Friday and yet I was excited for him.
On Saturday morning I texted him to see how things had been going and he told me he fell out of bed and hit his head! I had been planning on going to a crop that day but that devastated me.
It hit me then that my role as his primary care giver was now different and that 2 hr distance would be hard to get used to when when I wanted to check on him.
It wasn't a great start for me lol!
He was fine but I was frustrated the staff never actually informed me when it happened. It's been a real learning curve and a time of knowing what I can expect and what I need for me to be comfortable with Spencer there.
It was a bit frustrating too because a worker who was to take him to a movie that weekend didn't book the handibus because apparently when she had texted him a few days prior to see what movie he'd like to see he hadn't responded back. I guess he was at therapy at the time and said he'd get back to her and didn't. Ugh hello he has a brain injury and has a terrible short term memory.
There have been a few hiccups but he's now living there full time yay! I'm so happy for him that he's finally able to have some normalcy!
The staff at the Neuro rehab unit gave him such a beautiful send off there were a lot of tears and laughter. They got him an ice cream cake and some wonderful personal gifts.
We've struggled with his in and out catheters. He only feels comfortable doing them on his bed. He was doing them in his chair in the hospital but then for some reason started doing them all in his bed. That's fine for at home but when he goes out to the mall or a movie or a hockey game there's no bed there.
So we've been frustrated because his answer/solution is to not drink anything so he won't have an accident and won't be incontinent while he's out. I have told the staff several times look he can't go out for hours and not drink and not cath he will end up with a UTI and those are dangerous for him.
At our first Dr appointment with his family Dr for patients with complex health issues she and the nurse practitioner talked with him. He was going to a NHL game the next night and would be away from home for 5 to 6 hrs and he cathes every 4 hrs.
He had said he would do it at the game and said he'd get his staff to help him. I texted him a list of the supplies he needed and even talked with him on the phone earlier and he said he'd do it.
While he was at the game he texted me with updates on the score and when I asked how the catheterizing went he said oh I forgot my stuff I didn't have time to pack it. I said well didn't your staff remind you nope. Ugh it's these kinds of things that have exhausted me this past few weeks. There's been more hiccups with staff.
He had a urology appointment this week and while waiting to see him Spencer told me he had thrown up a lot the night before after dinner. For him that's normally a sign he has a UTI. I mentioned it to the Dr and while doing the scope his dr suspected he had a UTI by the odor of his urine and yep sure enough he's got one.
I'm praying the bumps along the road lessen and my anxiety and worrying will subside. He loves living there and the staff too. The staff are lovely but it's a learning curve that will take time.
I know there will be an adjustment I guess I thought it would be more for him then me. I constantly worry whether they will notice if something isn't right with him like the UTI.
He hasn't been homesick at all and absolutely loves being there and in the city I'm so happy for him and grateful that I'm the only one that is having a hard time adjusting LOL!
With all this happening we also had a sad decision to make.
We have 4 dogs our oldest Trinity a chocolate lab had aged noticeably when Spencer got sick and we were both gone for so long. He and Spencer were terribly close she slept on his bed every night with him.
When all the boys were home for that weekend the older 2 boys realized her time was getting shorter. We had been mentioning to Spencer how she was aging so quickly so he's be a bit prepared. I honestly thought she'd be here until Christmas but she started losing weight a few weeks ago and eating less and wasn't able to walk without losing her balance and the last few days wouldn't eat at all
Last Friday we made the most difficult choice to let her go. We sat with her for 30 mins or so just petting her and hugging her and telling her what a good dog and friend she was. She wagged her tail but it was like she knew it was her time and was at peace with it. We are having her cremated and will spread her ashes amongst the fields she loved to run in. I've cried for her every day since she left us. Going to Calgary the next day and telling Spencer was so hard. He missed her and the others terribly when he was in the hospital. He was heartbroken but was so grateful that he got to see her.
This past year or so has been such a rollercoaster of emotions and triumphs and setbacks and at times I wondered how I'd get thru it but the 2 constants that got me thru it all were Spencer's courage and all of you!!
There aren't enough words to express my love and appreciation for all of you!
Your prayers, encouragement and compassion for Spencer and myself were like nothing I'd ever experienced. You made me feel like I wasn't alone and that no matter what battle Spencer or I had to face that we could do it!!
As I write these words I'm crying in gratefulness not only for your support and love but for the friendships I've made and for the peas who came to see me while I was in Calgary for all those months. Thank you for being there!! Your visits helped tremendously!
The support, prayers, messages and encouragement touched my heart and I will be eternally grateful to you all! I don't even want to imagine how these past 13 plus months would have been if I didn't have you all!
Tomorrow is Thanksgiving and I am so thankful for so much and for all of you!
Thank you all and God bless each and everyone of you!
Kathy