Saturday, November 28, 2009

a -not so good- moment like this...

I know I should stay strong, I know that I should realize how much I DO have instead of dwelling on the negative but today I could only do so much...
This morning was hard. I woke up thinking today is the day, my Makenzie would take her first step in the right direction by getting her breathing tube taken out. I even washed my hair for the occasion :)
I come into her room after the shift change and I'm greeted by my very upset daughter who was getting her CPT exercises done. As I'm trying to comfort my child one of the pediatric team doctors walks in with an EMT doctor talking about her chest xray that was taken that morning. All I heard was it didn't look good.... It looked much worse.... She was not going to be able to get extubated today....
Yeah my heart sunk. I was still trying to concentrate on helping Makenzie but couldn't help but demand to know what they were talking about. They told me her chest xray didn't look good. She had built up secretion again and parts of her lungs were collapsed. They needed to cancel extubating her today and would maybe try again in 4-5 days.
I was still trying to hold Kenzie down so she didn't get in the way of the CPT but I couldn't hold back my emotions. I just started sobbing. I don't really know why but I did. I had so much hope put into today. I dreamed the night before that I could finally hold my baby when I wanted and how I wanted. I could kiss her lips again. I would not have to hold her hands down so she didn't pull out the tube. Standing there holding my daughters arms so she wouldn't keep flailing them about I was so sad feeling like I wasn't really her Mom right now, in the sense I have NO control over most of her life and what is happening with her everyday. Most Moms have a schedule for their children, you eat at this time and this much, you sleep at this time, you play at this time, you bathe at this time, you hold them at this time. You don't let this or that happen. For me, I cant say, NO you cant do that, you cant put an IV into my daughter, you cant keep doing those CPT exercises, you cant keep her on that breathing tube, you will feed her this time not all the time, I will hold her for this amount of time whenever I want. I hate this feeling. So out of control and powerless.

Later in the day we found out a guy Ryan works with, his grandson was being flown to Primary's from Idaho. After they got here they found out he has Leukemia. I sat watching his poor mother who like me, was home with her child one minute and the next in the hospital hearing your doctor tell you this life changing thing. I felt so bad for her. Her son is only 4 days older than Makenzie. I hated sitting in that room, Its not fair. These children are so small and so young. They should be guaranteed a life, a future, dreams. Its not fair they have to be the strong ones now and fight for their life.

Later this evening I was helping Makenzies nurse give her a sponge bath because she was really starting to smell. I have been learning about her gtube and how to care for it. I was gently rolling my hand across her belly and her scares from the surgery when I felt a large lump. I asked the nurse what it was and she didn't know. She called the doctor in who felt it then they both walked out the room. The nurse came back in a few minutes later and told me she was going to watch it. I have learned very quickly that when doctors or nurses go out of the room to talk, they think its something but are not sure so they will just say, 'we will watch it' until they figure out what it is. They weighed her, she is down. 9.13 lbs. AHHHHHH....
I don't understand... They gave me some, well maybe this or that as to why she lost weight but again this is something I wont know why until maybe tomorrow. I hate this... I hate seeing my baby go through this. LUCKILY they let me hold her. They wouldn't let me last night which just about killed me. I was sooo happy snuggling my baby but she got restless soon and her dumb machines weren't working great so they had to put her back in her bed after about 20 minutes.
20 minutes to hold your baby over a 2 day period could drive a Mother to seriously hurt someone!

I think the worst part by far about this whole thing, looking into Makenzies eyes. She knows whats going on but doesn't understand why. I hate that she has to go through this alone in a sense. She cant talk, she cant have this explained to her, she cant be buttered up with candy or a new toy. She is tiny, weak, voiceless. I wish I could just get into her mind and speak in a language she could understand. At the same time, I don't understand. I don't understand why any child has to suffer. I don't understand how this trial is going to help them grow- what if they don't grow? What if this is the end of the road for them? Why does she have to pay for me to grow? Why cant I grow in another way?
I feel powerless, helpless, hopeless.... I hate feeling like this... I wish I could kick myself. I know tomorrow is a new day and will be better. I will make sure it is. I still have my incredible little girl and that's what matters but I think I have the right to have a moment like this once in a while.

8 comments :

sherry said...

Just so you know I have been printing this for Mom. (as my kids call her GP) so she can read all that you say. She is very sad and has prayed for alot. Best wishes for today.

Love aunt Sherry

Robin + Annie said...

Kendra, there is so much going on. my heart goes out to you. I know that it seems like things just keep getting worse. But most of the time things do get worse before they get better. You guys have been through a great deal by this point. I wish that you could take kenzie home as well and I wish that she could be living a normal life right now. She is in the best hands in the state, you said so yourself. So no matter what is going on you know that her doctor is doing everything in her power to get your baby home safe to you. Please Please Please let me know if you need anything. Even if we need me to just come and sit there. I can do that to. I know that Ryan has to work. I can bring you some food whatever you need. Just let me know. If it is easier for you to email me you can do that do. I will get it on my phone.

TMI Tara said...

We love you. We are sorry Kenzie, you and Ryan have to go through this. {{HUGS}}

malory said...

Kendra,

Im so sorry, I couldnt imagine what you are going through. I wish there was something I could do or say to make it better. Im praying for you guys! Give your little princess a kiss on the cheek for me.

Malory

FROGGITY! said...

let it out. this is not easy and you deserve a sounding board. my heart goes out to you, i can't say that enough.

even when we can't be in control, God still is. we might not understand ... but he loves your daughter more than we can ever know. and he loves you too. that sounds cliche, but i firmly believe it. i pray healing and peace for you. i pray joy amidst pain and light in the darkness for you.

i will lift your daughter up at our Bible study this week. those ladies are prayer warriors, and it sounds like you need some fighters in your corner.

God bless.

Weza said...

Hi kendra, I came across your blog yesterday, this is certainly not an easy road for your fammily at the moment. I cannot begin to imagine what you are going though. Anyway, thismorning Froggity sent out an email all over the world to women like me asking us to pray for your sweet baby girl and family. I just want to let you know that I am certainly praying. All the way in Australia.
May today bring you peace that passes all understanding. That despite what the doctors say or what you see, you will have peace in your heart.
Lisa

Pumpkin said...

Hi I wanted to tell you how sorry I am, I got your blog address from my sister inlaw who knows you. The day i first heard of another little girl with SMA I was was dring to Primarys to do a sleep study on my daughter who has SMA I laid there trying to get some sleep knowing you were upstairs with your sick little baby. I wanted to just tell you there are more people than you know out there with children with this.... dumb thing called SMA. If you ever need anything just let me know I dont know.... I just thought i should write and offer anything I could, Im sorry again. You look like a very happy Family and a very pretty baby! I wish you the best of luck!!!

Devon said...

Hi sweetie.

My heart is going out to you too. I have been where you are and I know the darkness of it. You're not alone, Kendra...just let me know if I can help at all, ok?

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