Sunday, March 27, 2011

Dates and Patience

Ok, got some dates for you fine folks.

April 6 (Wednesday)- heart checkup, just to make sure the ole ticker is working ok
April 11 (Monday)- pre-op appt for Endoscopy.
April 18 (Monday)- Endoscopy (gulp). This is to make sure the ulcer has healed.
May 12 (Thursday)- Heart Cath- this is a day procedure to map out the heart for surgery

so why do I need patience?
Cause we STILL don't have a heart surgery date. We don't have a date because they want to wait until we get the results back from the endoscopy and the cath to set a date. Sounds reasonable.

However, this is frustrating for the following reasons:

1) I want this done and over with. Yes, I said it. I, selfish me, want this over with. I am a planner. As much as I can't control this situation, having a date on my calendar let's me plan and prepare myself for the surgery.

2) I also want this over with for Caydence. I feel like this surgery has been keeping her from so much, that I feel like we will FINALLY all have peace after it is over. Things as simple as going to church, aren't simple for us because we don't want Caydence to get sick, especially before surgery. So she doesn't go, and Joe and I have to coordinate who goes/who watches Caydence.

3) I plan on going back to work AFTER Caydence's last surgery. Well, it is a little hard to interview for positions, if I have no idea when I can start. Argh.

***** I know God's timing is best. I do. I know it will all work out how it is supposed to work out and that his timing is better than mine.*****

I also know that I am human and patience is a life long battle for me.

Below is a picture I thought I would share of my favorite badge.

Monday, March 21, 2011

Heart book

A couple of you have asked me how we talk to Caydence about her surgery. We do talk to her, but I also wanted to share this book the hospital mailed us. We have been reading it for about a month now, and I think it will help.

Sunday, March 20, 2011

Lovely poem

Wish I could take credit for this but I didn't write it.

I had a dream the other night

It came to me so clear

I stood before the throne of God

Afraid to come too near

God said to me "I hear your prayers"

There's answers you can't find

I asked you here to talk to me

And help to ease your mind

I said, "Well yes God, I am upset"

About my special one

This punishment is awfully harsh

What ever have I done?

God looked at me and shook his head

and said you've got it wrong

I sent this special child to you

because you are so strong

I searched and searched to find someone

With love so rare

A parent so unselfish

That could give that special care

I try and save my special gifts

Like those you're speaking of

For special kinds of parents

I call the "Chosen Ones"

Of all the ones to choose from

think this I have done

A parent who deserves the best

An honor you have won
- Author unknown-

Wednesday, March 16, 2011

Mommy meltdown of 2011

A lot of you are very sweet and tell me that I am strong through everything we go through. I thought I would share a story of me not being strong.  This is more for me than you. Blogging is free therapy!

So as you know Friday, Feb. 24th we went in to the hospital for Caydence's stomach pain. It took them 3 times to get an iv in her. Break my heart much???

So all day Saturday we pump her full of laxatives and question what is going on with her.

Sunday, at this point I haven't slept more than say 15 minute stretches. I am tired. I am frustrated we still don't know what is wrong with my kid.

Sunday there is some action in the toilet, so I, being optimistic, think that we are getting better. The "action" comes out black and that is when the "crap starts hitting the fan" (Pun intended)

So LATE Sunday night, after Joe had gone home, the weekend doctors come in and starts giving us news.

Bad news

Bad news #1- your child's hemoglobins were 14 when she came into the ER. They are now 7.
Bad news #2- oh, and that means she will need a transfusion.
Bad news #3- oh, and she will need to go to the ICU so we can monitor her closer
Bad news #4- she had blood in her poop
Bad news #5- and we really don't know why she has blood in her poop

and the one that sent me over the edge....

Bad news #6- oh, and we need to put in another IV so we are going to stick your daughter, yet again.

At the point my mother in law was in the room with me, and the blood people were ready to come in to stick Caydence. I can't watch them stick my kid another time, so I excuse myself. Thank God my mother in law was there cause I needed out!

The doctors are at the desk when I walk by and one of them asks me "are you ok?"

to which I reply "NO, I am not ok" and keep walking......

****Insert hysterical crying****

Call Joe who talks me off the ledge...

Go back in the room. Liz (MIL) tells me Caydence was saying "I'm sorry" when they started sticking her.

****Insert more crying****

Head to the ICU. We arrive in the ICU at exactly 12:01 on Caydence's birthday. I tell the nurses it is officially her birthday and they start singing to her. As a way to distract me (I learn later), they take me out of the room to the lobby to fill out some paperwork.

****Insert hysterical, 3 year old, monumental crying****

Go back in the ICU. The IV is in. Caydence is not crying and wanting me to hold her. She passes out pretty easily that night. Me, I stay up all night cause of the all the monitors. I start praying for Caydence, and well, that was the end of the meltdown.

So you see, we all have our moments. I tried so hard to not lose it, especially in front of Caydence, but a momma can only take people hurting her kid so long until she loses it.

Thursday, March 10, 2011

3 year checkup

So last week we were supposed to have Caydence's 3 year checkup and....well...we were a little busy last week.

So we went today.

Caydence is almost 3 feet tall, which is the 10% for height.
Caydence is 26.4 pounds, which is also about 10% for weight.

It sure is nice to see those percentages. We are so used to being in the 2-5% range.

She got 2 shots today which she was NOT thrilled about. "Mean old doctors" she yelled as we left the building. A sticker, some ice cream, and Max and Ruby later, and I think all is forgiven.

Tuesday, March 8, 2011

a week later

I meant to write this yesterday but life caught up with me, and I ran out of time.

What a difference a week makes. Last Monday Caydence had 3 transfusions, an endoscopy, and was in the CVICU with a massive bleeding ulcer....on her 3rd birthday of all days.

This is Caydence now. Enjoying her scooter the grandparents got her:

and I made sure she finally got to have some cupcake for her birthday:

Thank you all for your sweet thoughts, prayers, gift cards, food, visits, and everything in between. We greatly appreciate it!!!

Wednesday, March 2, 2011

Wednesday update

Caydence pooped twice overnight and they were both negative for blood. This is wonderful! This means she is more than likely not bleeding from that ulcer anymore.

Also, they checked her hemoglobin at 6am this morning. It was 15, which is great. You may remember yesterday it was 14.9 and 14.7, so it is not going down. If it was going down that would be another indicator that maybe she was still bleeding.

She hasn't been oxygen since Monday, and her oxygen stats are staying in the 80's, which is great.


They want an endoscopy in 8 weeks, just to make sure she's heeled. This is the same day procedure she had on Monday where they put a camera down her throat to check out her stomach, intestines, etc.

They can't do her cath or heart surgery until after that, which means cath and heart surgery will probably be pushed back to May now. I will have new dates later that I will post.

After the doctor's do rounds they are going to let her start on clear food- jello, etc. and see how she does. They will progress her today if she does well......and possible let us go home today. We shall see.

Tuesday, March 1, 2011

Tuesday update

Caydence's hemoglobin was 14.9 last night at 10pm, and 14.7 at 4am. This means, in theory, that since her hemoglobin levels are still the same, she is not bleeding out anymore, and hopefully the ulcer is fixed and won't be a problem.

They just put in orders to transfer us to the 8th floor, so hopefully by tonight we won't be in ICU anymore. We have to wait for a bed to become open but if they discharge anyone today or if they have rooms available we will be heading back up. The ratio in the ICU is usually 1 nurse to 1 patient, or 1 to 2. Up on the 8th floor, it's more like 1 nurse to 5 or 6 patients. So, that means the patient is more stable and in theory is recovering and doesn't need the constant attention that the ICU provides.

No eating or drinking today to let the stomach heal.

Cardiology came by. So, GI wants Caydence to be off aspirin (a blood thinner) for 8 weeks to help thicken the blood/wall surrounding her stomach.  Well, cardiology wants to thin her blood when they do her cath and surgery. So what does that mean? It is probable that Caydence's surgery may get moved back because they give a large dose of heparin (a blood thinner) when they do surgery. Her cardiologist is going to talk to the GI people and we should know later today if the heart procedures will get moved back.

More to come but I think we are heading in the right direction.