We were so so lucky to have such amazing people rally around us.
We had so many friends and family members come by. To give us a hug. Bring us some treats. Give Kenzie loves. There was not a single day someone didn't come and see us. Even the days when we asked for no visitors that didn't keep people away. and not in a bad way. We were so thankful. Ryan's sister Brooke organized for people to bring us dinner every single night. Primary Children's cafeteria food is actually really good- but you can only eat it so many times. I rarely ate unless someone was there making me eat but even those times eating in the cafeteria got a little old so these dinners every night were nothing short of amazing. It also gave us time to be with people 1x1 for even a few minutes. I remember a few different days where I was only in the room with Makenzie and people would just take turns coming in. No one ever coming in more than once and it lasted all day long. Only 2 visitors per patient (including parents) so when Ryan was there he would hang in the waiting room chatting with everyone there and I would stay in the room with Makenzie. I would usually tell the same update/story over and over. Making sure everyone had the latest information. and of course all those machines were interesting. The PICU waiting room has 2 tv's, a fish tank and lockers. We stored a good amount of our stuff in our locker but we had to have a whole other locker for the goodies people brought us. It seriously saved us. People brought us cookies and chips, juice and crossword puzzles, Pepsi and Dr. Pepper, magazines and little games. Just about everyone brought Kenzie a gift as well. From pictures to balloons to stuffed animals. We have saved everything. I have a small chest of every card or picture given to Makenzie. I have also saved her stuffed animals and remember just about where each one of them came from. That is something Tracker and I talk about. When we got them and why and who they were from and that they are his sisters but she will share with him.
Ryan stayed at the hospital on the weekends and if he had a day off during the week but he went home when he had work the next day. That poor man. I don't know how he did it. He didn't have more than 2-3 days off work the entire time Makenzie was in the hospital other than weekends. My sister Jill lived with us (actually just moving in right before Makenzie went to the hospital) and she was soo good to take care of Harley when Ryan wouldn't come home. I never left. I slept on the pull out chair next to her every single night. and sleep didn't happen much. For me or her. I will never forget the sounds of those machines. The nurses were always so sweet and tried their best to not make a lot of noise so I could rest. They were always so concerned about how I was and if I was eating or sleeping. We were offered to stay in one of the rooms they have there in the PICU for parents. but its basically a closet with a bed. As nice as that was I didn't want to be that far from Makenzie and Ryan was not interested in sleeping in such tight quarters so the nights he was there he slept in the waiting room on the couches. Of course not getting much rest because people were coming and going. The pull out chair was only so big. It was a chair so there was no way we could both fit. It somehow ended up becoming rather comfortable for me. Or anything would have worked. I just needed to be with my baby.
Our family was especially amazing. My mom and Ryan's parents came up just about every day. I think there was only a couple days they didn't make it. There were days they took the whole day off to be with me. It was so good to have that much support. That much love. I cant imagine what they must have been going through. I know how hard it was for me to be the parent and to watch my baby in that bed. but I cant imagine watching my child (the parent) hurt that much and then have my grand baby the one on the bed. It makes my heart just ache knowing how hard it was for them.
We had visitors come that we hadn't seem in a very long time. Most had the best intentions and wanted to lend support but there were definitely those that just wanted to come for the show. Its so sad to look back now and see that. At the time I didn't see it but I see it now.
I was told this by someone who had lost a child while Kenzie was in the hospital that we will soon learn who matters in our life because when the worst happens its like a car accident. Everyone is slowing down and wanting to take a look but as soon as they pass they go on with their life and never look back. We have unfortunately seen this many times. People being there for the accident and they soon move on and never look back. Its so sad and really hurt Ryan and I. but it also made us so thankful for those that stayed. Knowing they are ones that will be here forever.
Primary Children's is just amazing with doing everything they could to take care of their patients and families. Makenzie "won" bingo prizes just about everyday. Never did we play but she always got something. A toy or blanket were the most popular. It was always a fun treat and one we didn't take for granted. For everyone of those items were donated by some amazing people in the world.
Right when Makenzie came into the PICU I started putting her leggings on her everyday. I had Ryan bring me every one of her pairs so I could switch them everyday. It didn't take long before this little trend became known and doctors and nurses would stop by just to see what pair she was wearing. I usually tried to match her bow with the leggings but she didn't always wear a bow. Thank God for those leggings because those rooms were freezing.
We made some amazing relationships with some of the staff. There was an overwhelming amount of love from everyone that walked in that building.
Out of who knows how many doctors and nurses and respiratory therapist and anyone else that was around Makenzie. There was only 2 nurses that we had to ask never to get back again. and it wasn't that they were great- but not for this uber controlling Mum. I am sure I was crazy in many eyes but I made it a point to be as involved as they would let me. I was her Mum and I wanted to feel it. There was so much I couldn't control or do with her that anything I could do (like change diapers) I insisted I do and wouldn't take no for an answer. I also needed to understand as much as I could. I didn't want to just accept what they recommended. I needed to know why. and honestly because of that- I knew more of what did and didn't help Makenzie and I think I helped not let things happen that were unnecessary. Such as the MILLION IV's blown. I know she needed an IV but she also needed breaks when every vain in her hands, arms, feet and legs were blown.
I never felt so young as I did when we were in the hospital. Mainly because I was mistaken as not being Kenzies mom by anyone that didn't know us already. There was more than once that they would be talking to whoever else was there that day instead of me and I had to tell them that I was her Mum. Ryan and I kind of thought it was funny because he didn't worry about shaving while she was there and he looks older than me anyway but looks even older with all his hair so me (not wearing much makeup) and Ryan looking all old. They probably had some interesting conversations about this crazy couple.
They had a public shower in the PICU waiting room. I would shower every morning at the first shift change. There was only 2 times I didn't get to the shower before someone else. I used that hour to shower, get ready and maybe grab a granola bar out of the locker. I was not interested in going any further than that or being gone any longer than needed. They make you leave at 7am and 7pm so the nurses can switch and give the update to the next nurse without the parent being in the way. They can also get acquainted with the patient and start in on their day with minimal interruptions. I understood why they did this but I hated leaving. The last week of Kenzies life they stopped making me leave. There were even times here and there that if by chance I was still sleeping at 7am (those nights I was up all night with issues Kenzie was having) they didn't wake me and they let me sleep but those days stressed me because then I felt like when I did leave her I was neglecting her and leaving by choice instead of the rule. Some of those days I ended up not showering and looked even worse than normal. The shower was actually not that bad. I think back and it grosses me out. There was a lot of random hair in the floor drain. but in the moment I didn't care. I didn't care that I was surrounded by several other parents shampoo bottles and i was standing naked where someone else just stood naked. It was a nice place for us to get ready. That hospital- really made it so much better for us.
To get into the PICU you have to be approved. You first call a phone number and get paged in. They soon knew who I was and I never had a problem but everyone else had to check in and get visitor tags.