It was 4 years ago.
4 years ago today Dr. S came back got some more blood work. This was for something similar to SMA but it was not SMA. She didn't give me much detail on what it could be. I think she wanted to get more answers before scaring me. The blood work could take anywhere from 3 weeks - 3 months to get back. So we wouldn't have a for sure diagnosis right away. but... we could do another test that would give us a 99% result of what Makenzie has.
My sister Jill didn't go into work that day. She came up to the hospital to see us.
They took Makenzie and were going to do an ultrasound of her chest/diaphragm. They told me to go get something to eat and come back in a couple hours. We went down to the cafeteria. There was a table set up with apple cider and gingerbread cookies. There was Christmas music playing and some of the festival of trees had started to show up. I don't remember if we ate or not. but we did see a Jazz basketball player walking the halls. We wanted to go say hi but chose not to. When we got back to Makenzies room we realized the JAZZ players had stopped by! and we missed them. They left Makenzie with a signed basketball. It was really sweet.
Kenzie got back shortly after us. Jill and I stood around her giggling and painting her nails. We always have weird voices and funny things to say so we keep each other entertained. We tried to entertain Kenzie as well. She usually looks at us with looks of being thoroughly unamused. Silly girl.
2 of the PICU doctors came in the room and asked to talk to me.
They pulled the rocking chair over and then pulled up to less comfortable chairs in front of that one and sat down. I guess Jill went and sat down behind me.
They proceeded to tell me that they did the xray and they got the results they were looking for.
They watched Makenzies diaphragm through that xray when the machines are on... It moved nicely. When they turned off the machine and she tried to breath on her own it didn't move.
Her diaphragm was paralyzed.
They knew already from previous tests that Makenzie definitely has some sort of Muscular Disorder. and the only muscular disorder that also has a paralyzed diaphragm is a disease called SMARD.
Spinal Muscular Atrophy with Respiratory Distress.
I remember very little of what they said.
I know they explained what what happening, that there was very little knowledge on this disease, its rare... and then they said what our options were. What my daughters life would be...
They said we could trach and vent her. Take her home and deal with a lot of problems. She was very far along in the deteriorating of her body and they assumed she would be completely paralyzed by the age of one. They said several times that her brain is and forever will remain intact. It will not effect that. Which means she will be paralyzed with a brain of any other child her age. They said a lot of different things about trach and venting Makenzie. How she would need constant care, that we will most likely get a few hours a day where a home nurse will come in to help us since she needs to have eyes on her at all times. They talked about how I will learn to save her life almost on a daily basis. They talked about how hard her life would be as well as ours.
The other option they gave us was to leave her on the vent here at the hospital and just wait for her body to fail.
The third option would be to take her breathing tube out now. Let her go on her own and be at peace.
So in a few moments my life was pretty much shot to hell and turned to shit.
In a few moments all the hope I was grasping was sent out the window. In a few moments I was realizing a whole new low in life that I had no idea excised.
While they sat across from me I didn't say much. I asked a few questions and I remember repeating my options over to them. Making sure I understood them. I then asked something along the lines of--- so there is no other options. There is nothing else this could be? She is dieing?
I didn't get up when they were still there. I don't know what they thought of me. I just sat there. Staring at them. They got up and left. and I turned to Makenzie. then I turn around and looked at my sister who was balling. It wasn't until I went over to Kenzie and started loving on her that I started to cry. It all seemed so unreal. That this is not real. That this cant be happening. That there must be a mistake.
After a few minutes I went to call Ryan.
He was at work and I asked him if he wanted me to wait to tell him or if he needed to know now.
He said now.
and I told him.
I told my husband over the phone that his daughter was dieing. That we now had to make a decision on what her life would or would not be.
He immediately left work and came up to us.
and we fell apart.
We said no visitors but asked our parents to come up. That they needed to be there at 6 and we needed to tell them what we found out. They were asking questions but we didn't want to have to explain everything more than once. It was hard enough to say we didn't want to say it over and over. My sister Kristianne happen to come by so she was there as well. Her room was dark. She was napping.
and I told them. I told them what the tests said and what our options were.
I hated saying those words and it took everything I had to get them out.
They all cried.
They all said they would support us no matter what.
It was a horrible day.
4 years ago was a horrible day.
I cant believe how much I miss her.