September 17, 2011

Day +17: Such a Roller Coaster

This process is such a roller coaster. Good days. Bad days. Good hours. Bad hours. Ups. Downs.

It is exhausting.

I feel like the second we receive positive news, we are bombarded with triple the amount of bad/negative news.

On top of all of the ups and downs, I am currently caught in the horrible hell known as comparing. Comparing Kate against other BMT kids. Comparing Kate against other kids in the unit, that had transplants after her. Comparing Kate to BMT stories on the Internet.

I need to stop. Every time I compare, the only realization I come it is that Kate is on the slow end of things. She will not be someone that goes home by day 25. Hell, she might not even be home by day 35.

The exciting news of Kate's increasing ANC was instantly shattered by more issues with her line due to the incompetent nurse. Then her ANC plummeted yet again.

Over the past several days, Kate's line has been repaired (which involved cutting the line and patching it due to the clot never dissolving properly), she's started an ANC booster medication because she can't seem to increase her counts on her own, we've started continuous lasix as well as other diuretics because she can't pee, she's dealing with breathing/ oxygen saturation issues due to excessive fluid, and she is back down to a low ANC.

One step forward. A million steps back.

I'm just ready to know this transplant worked and that Kate is actually getting better.




- Posted using BlogPress from my iPad

18 comments:

Lynsey said...

We are praying so hard for sweet baby Kate!!!

Jennifer said...

I'm so sorry. I can hear the pain in your words. I'm praying for you guys. {hugs}.

Ali said...

I'm praying for little Kate every day!

Cassy M said...

Many thoughts and prayers for precious baby Kate.

lissasue3 said...

(((hugs)))

Emily said...

That must be so frustrating! I'm sorry! I'm still praying for your sweet Kate. Wish I could do more. Even though it seems so far away, just know that there will be a time when you guys are past this part of your life and onto better days.

Laura said...

Thoughts & prayers, friend. Hang in there.

Anonymous said...

I am praying so hard for your family!! Many, many hugs to all of you!!

Ashley said...

Lindsey,
Kate, Alex, and you were on my mind and heart a lot yesterday and I've praying for y'all every time you come to mind. Know that I'm praying for Kate's' health and for your peace, comfort, and wisdom each and every day.
Love
Ash

Anonymous said...

I wish there were anything I could do other than sending you thoughts of strength and healing. Your pain is palpable. I wish I could make her better. Always thinking of you and Kate and sending love.

Olivia said...

I came across your blog the other day and read the first page of posts that showed up which drove me to start at the very beginning of your blog and go forward. For the past three days I have been reading your story and am in utter amazement of the love that you and your husband have for your daughter. I cannot even begin to imagine the hardships that you are facing but I can pray for ya'll and I will definitely be doing that. The Lord never bestows a challenge upon someone that they can't handle, always remember that! Kate is bigger then this!

Anonymous said...

Dear Lindsey:
I have been following you since early Bump days when you were still pregnant. My baby was born 1 day prior to Kate. You have always been so positive and upbeat. Keep the strength. You have all come so far. Your family can do this and will be successful. My prayers are with you and Kate.

Laura said...

Just wanted to say you all are in my thoughts and prayers. Rooting Kate on in Wisconsin!

The Goodins said...

How awful :( I have been in that comparing hell before. It is all-encompassing and consuming. I am praying and will step it up a notch. I hope Kate has a good week and you get some peace of mind very soon.

Kodi said...

Hey Linds- Not sure how you got the # for who registered because of Kate- but I don't remember putting it on the form, and I totally did it because of y'all. XO

Anonymous said...

Best wishes that the roller coaster goes upwards and continues that way.

Beth said...

SO many prayers said. Often.

Katherine said...

Thinking of you and kate every day. Hope to see you post some good news soon!! Lots of positive thoughts and prayers from us. :)

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