Jan 8 to 14th

Once again I don't know what I would have done without the daily snaps from Jerika and Lyvi. The visits from Val were so good and just an extra kick. She made Kinlee laugh so much. I guess I didn't take as many pictures of my nieces and Catie as I should have because at least 1 of them were there every day sometimes more. They did go to Disneyland during December so that might explain why they weren't in a lot of the pictures. I am still working on getting videos somewhere I can share them so you can actually see the progress daily. The board you see above is her therapy board. Everything she had to do in a day was always listed on the board and it would also have instructions about who could do what.

This is what lots of my texts looked like with my nieces. Making sure I felt like I could leave if I needed. Since I actually started writing things on this blog, I really wished I would have been better at writing things down, like who came to visit. Amanda and Haven came one day and took me to Trader Joes and out to lunch. Cindy Tiechert came to visit. I think I will make a "visitor log" and post it here when I am done.

I would incessantly save things that I hoped I would read over and over and over and it would help me endure this nightmare. Once we moved to the University my mental health really struggled. Ray and Blake were gone more (especially Blake, that should have been a clue). And the nurses weren't "my nurses" too. I know they weren't there to take care of my mental health but in Bountiful I made so many friends with the workers that it just made it easier to "be alone". And I didn't eat much at the University, the logistics were too hard. And they threw away my pop that was in the community fridge, that really broke my spirits. LOL

It is just so weird to me that she doesn't know basic things. If you look close in the picture those were important things they thought she should learn. The therapists were so amazing which I know I mentioned before, but not a bad one in the group.

You can tell he loved her. We worried about her short term memory also and worried she wouldn't remember things. The day that changed was a Sunday. When Blake and Ray would leave she would cry and be so sad. So Blake decided he would leave and not tell her he was going because he thought it would be easier for all of us. Well, she remembered he left without saying goodbye and she didn't forget. Every time he would come she would tell him he couldn't leave without saying goodbye. When he did come he would never stay with her at night. He would stay late but not the whole night, which was fine it was just Ray and I. Landry and Jerika told us in the beginning that we shouldn't even thing that he was going to stay if it was going to be hard. Boy were they right, and I was so wrong. We did tell him we didn't expect him to stay, but he should give her a little time. So, we really can't be angry, I'm mostly sad. He was a victim in this whole thing and and I'm not a monster, I gave him A LOT of grace.

This the really the closest explanation to what happened to her that was given to us. Nobody knows what happened and why. Her heart is perfect now and so is she.

This is Alexa. Kinlee's physical therapist went on a trip so she got a new one and this was his intern. She was amazing and Kinlee loved her too. To be honest she loved all of them except she struggled with some of the nurses and one particular CNA, which was so funny to me. It was one that would wake her up in the night but she would also sing to her (head, shoulders, knees and toes) and it made Kinlee crazy. Someone from food services would come in every day to get Kinlee's food order. Our favorite was Joe. I really wish I knew her last name or how to find her to thank her for sitting with me longer than she probably should have on some really hard days. The social workers, and insurance processors were also amazing and would check on me frequently, especially when I told them my mental health was really struggling.

The visits from Ollie were the BEST. These 2 are still besties and Kinlee talks about him all the time. He started calling me nananel which I love. He is such a joy and a literal savior for us. 

Nobody really got many pictures of me, so I am sharing 3 of basically the same ones. My friend Erika had cancer a few years ago and lived at Huntsman Cancer center which is right across from Neilson where Kinlee was. Erika came for a follow up visit and so she came to visit us for the afternoon and brought us a care package. It was so nice of her, but if anyone knows kind of what were going through it was her.

Sorry not sorry for the trach pictures, it just surprised me how it healed. Brooke is back again. She called me one day and I was struggling so she came for 3 days. Stayed with her mom at night and spent the days with us. I don't think she will ever know how much this meant to me. She's the best! Before she came I was having horrible panic attacks and would wake up every more in panic mode. Just her being there helped that so much and they died down a little bit. I will admit that even now, almost 11 months in, I still wake up most days in panic mode for some reason or another. Am I medicated? No. Am I getting counselling? Also no. I did however call my doctor while I was in Utah and had him put me on some medication so I could cope a little better.

Magic did exist every day. She was slowly getting better. Since day 1 we fought to keep her in every hospital. The insurance just wanted to give up on her every step of the way. I would never wish ill on anyone, but some days when they would try to cut her care, I would be so angry and think what if this was one of their family members. But, at this point we just wanted her to stay until February 12. Just one more month, I could do that. I hadn't been home since December. I missed everything, but I knew the longer we stayed the better she would do.

Then Ray would show up. Thank goodness. She loved it when he got there. The first night she was at the University we both tried to stay, since that is what we did at Western Peaks, but it was not good. The sleeping situation was much different. So, he would stay on the nights he was there and I would go to Ashlins or Ramonas.

We put a lot of miles on our cars and of course I would regularly check to see where everyone was or what their driving status was. Blake had Kinlee's phone the whole time so that is why there is data for Kinlee. He kept her snapchat streaks going....until he didn't.

We couldn't leave her alone at all in the room. The alarm would sound if she tried to get out of bed, which she never really tried to do. But she had no idea what the nurse button was or how to use it. So there had to be someone with her at all times. There were a few times I just stayed in the room during therapy, but I struggled doing that too. I don't really thing anyone understood the severity of her injury and that she really was just like a baby.

This was Kelsie, her occupational therapist who was also amazing. She was more "down to business" which I loved and she made Kinlee work.

I can't remember this guys name she only had him once and that's all I'll say about that. But then the person in the right corner is Tyler he was her Speech Therapist and they were so cute together. They would sing and "have lunch" and she thought he was the best.

Here he is again. And also Val and Rob from Western Peaks. This was the only time Rob came but the fact he came at all was so kind and SHE LOVED IT.

These two were the best, they even went to therapy with her and she had a continuous smile the entire time.

 

January 3, 4, 5

These days seemed to long. Especially the ones without visitors. I feel bad now because I kind of quit taking pictures. I wish I would have taken more of the people who visited her. I have so many videos but not a lot of pictures. But, the therapists here were so good with her. I had it out with a few nurses, but overall they were good. The people on her team that worked in the office were amazing and love Dr. "Red". Realizing during all this therapy how much she didn't know anymore was very hard for me to wrap my head around. She basically woke up with a blank brain, except for the songs, she knows her songs.

I'm not sure if I mentioned the first night we had her here she really didn't need the vent but they wanted to make sure, so they put it on her anyway and the young girl doing it "almost blew her up". At that point Ray intervened and said they could just monitor her and if she did need it they could come back and hook her up, preferably someone else. But, she didn't need it and that's why we were able to pull the Trach. Which was also crazy. They pull it out and only put a band-aid on it, no stitches, nothing. And it heals so fast it was crazy. The feeding tube wasn't so fast, she did not like eating anything or drinking for that matter. But they started working on it more. So that had to stay in much longer. 

We loved Kara. She was from New Jersey and was doing her internship. We loved all of her therapists really, but Kara was able to get her to do more than others. Alexa was also amazing. 

 

December 20 to January 1

Not where I EVER would want to spend my birthday. But Ray arranged for my friends to meet us at Maddox for lunch and arranged for my nieces to stay with Kinlee so we could go. It was so good to get out and try to feel a little normal. The balloons and flowers were from Val, yes Val the nurse. Also my friend Anji and her husband came to visit me also (such a surprise) so many tender mercies.

I put together a huge collage of pictures to help Kinlee remember and learn our family members. However, to this day (October 14) she still has trouble identifying some people by name or by sight. She is getting so much better though. But look at these pictures of her and how she was just break my heart knowing now how confused she was and didn't even realize it. She was such a trooper.

I'm not going to lie, December was so hard. All of the holidays were hard. But, I recognize how lucky we are that she is still alive even though it was hard.

The picture on the right in the middle is her "pic" line wire. It is really hard to see, but we were glad to get it out, one more step in her recovery.

My mom brought me cherry pie and pumpkin pie, it was so good and such a good feeling of home.

Christmas Day was really hard, being away from Jerika was excruciating. The nurses and staff really tried to help make things better and we were so thankful for all of them.

Shelby and family brought us Christmas dinner and Kinlee was even able to sit with us for a minute. Blake was really worried that she was struggling and wanted to take her back to the room though. But we waited until we all finished eating. This is another reason I can't believe he abandoned her. He was so good with all her care and knew so much about all her levels and everything. But, once again, I'm working on not being so angry and sad about it.

Look who came after Christmas. These visits literally gave me life and the mental push I needed to make it through the weeks.  

Lyvi was such a "big helper" with everything and they were all so nice to let her "help". This little girl has been through so much in her short life. Ollie was a blast to have come visit too, he started calling me nana nel and boy does he love his Kinlee.

Nakia brought mom again and thank goodness for her and her willingness to help her big sister. I hate it when I need to be that one that needs help instead of the one helping.

Amazing visitors.

She really hated physical and occupational therapy, she would get so mad and swear so much. It is weird because after we moved her to the University she quit swearing and would get so mad at us for swearing. Maybe one of these days I can post the videos I have or at least a link to them. I have a lot more videos than I do pictures.

And this is how we spent the new year. She was having so many less meltdowns and we did sleep better. There was one night where we thought we would going to lose her when they were suctioning her out, blah blah vagus nerve .... it was the worst. We were so thankful she hadn't been moved to the other building during her stay here. They kept her hooked up to the ventilator at night so that they insurance would actually let her stay. I can't even tell you how many times in the beginning the Insurance Company just wanted us to give up and move her into long term care. They didn't even think she would get better ever. She was approved for Medicaid at the end of November because her and Blake were technically separated but we feel like the insurance she had, even though they were horrible every step of the way and wouldn't listen to any of her doctors, was probably better than Medicaid at that point.