FIRST: The wonderful night shift nurse that has been wonderful with Skyler the past two nights. She has made me feel very comfortable and she does it with a smile on her face.
SECOND: This awesome view that we have from our room. At night its all lit up and pretty. I get to see the world again, Even if Im not out there at least I can see it.
THIRD: The peace and quiet we have that lets Skyler rest better.
AND LAST BUT NOT LEAST: Skyler is finally well enough to be up here! I never thought this day would come, but it did, and I am beyond grateful for it.
This is a before picture from down in the PICU
And this is Skyler now, finally well enough to be here!
It took some getting used to, but this is a change that is definitely worth it and I am so grateful that we are here and that Skyler is starting to get better. I may get frustrated sometimes but I am so grateful for the staff that is taking care of my precious boy. Thank you!
6 comments:
I don't think you were being mean. Its how you feel.
I am so glad that Skyler gets to be on the 4th floor but that doesn't mean everything is okay or that you are not use to something else.
Trust me we have been it that hospital many many times and I end up having to show a lot of the nurses what to do. It gets a little frustrating because they are the ones taking care of your child. I remember when Maggies trach came out and the nurses didn't know what to do. They panicked and I had to take over. I'm not saying that all nurses don't know what they are doing but it definitely makes a difference when you have good nurses. Anyway you need to express how you feel or you will go crazy keeping it in. You have valid fears and concerns and thats okay to talk about. The people that love and care about you will listen without judging and just be there for you.
I just want you to know that we think about you guys all the time and pray for you both. We saw that Skylers counts were still low but would love to come and bring him some things when they go up to a safe spot. Please know that we will do whatever we can for you. It sucks being in the hospital especially for long long periods like this. You are doing an amazing job!!
You are welcome to vent any time you need to. I have a post from last week on my blog that I vented and then I felt the same way you did. But I decided that it is good to get it out and it helps you to feel better when you vent. Skyler is looking AWESOME! Are you guys in a room that has double doors? You go into one little room and then into your actual room?? I know a lot of the rooms in ICS probably look alike, but I swear your room is the same one we have been in twice. The view, the layout of the room, and the chair (maybe all the chairs are yellow). Tell sky to keep getting better. He will be home before you know it!!!
oh, I am just praising Jesus for what He is doing in little Skylers life! Yes, Lord, work your miracles!!!
Today in Primary ALL of the children made a card for Skyler. Would it be alright to bring it up and leave it for him? We have a blanket too. If he is still not having visitors then it's totally fine I could even take it to your parents and leave it with them.
So glad to see you are able to have a window again. It does a soul good to see the world. We are all still praying for Skyler and you. Hang in there, you both are so loved.
Crystal,
You don't know me, but I feel like I know you and Skyler well. I've been following your blog during the last 12 weeks. When you posted on Rachel's blog today, I knew I wanted to say hi. We are in room 4--so we are just around the corner! My sister-in-law was the Nurse Practitioner on duty in the ER the night Skyler was admitted. Do you remember when she talked with you at dinner out on the patio a couple of months ago when Skyler was first in ICU, well, I was out there eating dinner that she had brought to us while we were on Round 2 of chemo.
Anyway, then I became friends with Amanda and Chelsea and found out about all these cute kids fighting leukemia and realized that we all have a common connection. I check your blogs every day to check your progress. I pray for you and your kids every night! We celebrated when we found out that Skyler was out of ICU and up on the floor. I wanted to run right in and introduce myself, but I thought I'd better respect your privacy.
I admire your courage as you've sat by Skyler's bedside and worried from day to day. Skyler is obviously a fighter and has an amazing mom!
Sorry this is so long...but I wanted you to know that we are very aware of you and Skyler. Rachel checks your blog too! Hope to meet you in person soon!
he looks so much better. I WILL PRAY FOR SKYLER AND YOU!!
CYNDELL
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