Tuesday, April 21, 2009

Trying to keep a stiff upper lip

Not feelin' the love about Mott's anymore. Haha (I still love the staff but the facility, not so much.) We got moved to the regular floor after all. I am really struggling with it, which I'm not proud of. The room is small and depressing. It's smaller than her PICU room and we share it with another family. Their little boy's bed is literally two feet from Kate's. Can you say, "Claustrophobia?"

They are sweet...but he is loud. And he just woke Kate up after I had gotten her settled down for the night. *sigh*

I will adjust, but tonight I am trying really hard not to just bawl my eyes out. Kate is sad and looks confused. She gets sooo upset when she is moved because it hurts her. Then she looks at me with the question in her eyes that says, "Why are you letting them do this to me?" I feel awful for her.

The little boy next to us had a normal fontan, was out of PICU in three days and is already up walking. Kate was in PICU for eight days and is sooo weak. She did sit in the chair today but cried and cried and then fell asleep sitting there with me holding her head up. Tonight her alarms keep doing off because she has had one Desat after another (which means her oxygen levels drop too far when she is sleeping). She is still on oxygen. She has not eaten anything yet, although was able to take some sips of apple juice. Please pray that she will regain her strength quickly and that her chest tubes will dry up. When the fluid stops and she can get them out, she can come home. I pray it is not weeks before that happens, but I think it will take a miracle for her to be able to go home soon.

I stood on their side of the room to take the picture of our side. (The curtain is where their side starts.)

There is a playroom, so that was encouraging. Until... I was in there with the big girls, who had come to visit and noticed a little boy with snot running into his mouth. He then wiped it with his hand and went around touching almost every toy in the room. ugh. I asked the nurse if there was a no-sick-kid policy for the playroom. She said yes, so I told her about the sick child. She went and told someone, but then no one came to clean the toys. They were soooo careful in PICU. If anyone got sick, they totally isolated the child away from everyone else. Now I feel like I have to try to keep Kate safe from others who are not worried about infecting other kids who have had a major surgery.

I'm bummed...can you tell? I considered not writing this post and just pretending that I was fine...but that is not truthful. So...I'm keepin' it real.

Kinda feel like I'm in a camper


Kim K. said...

I so remember that couch. I had many stiff necks trying to sleep on that blasted thing. I'm sorry you have to share a room. Josie was so wild with fear and her screaming was so bad, that they kept us isolated in our own room on the regular floor. I seriously think the nurses wondered what the heck we had done adopting her at that point. Perhaps this little boy will be released soon and you can have the room alone. I'm thinking of you. I'll send you an email too. Hugs!!!

Cari Bacon said...

Thank you for your honesty. You don't have to "keep a stiff upper lip" for us bloggy friends! :)

We can pray even more specifically for you.

I'm praying that Kate's fluid drainage will dry right up so they can take out the chest tubes and get you both on your way home!!

I sent an email to our church's secretary tonight so she can update the prayer sheet for tomorrow's Wednesday night service.

This may sound weird, but I'll say it anyway. I'm so proud of you, Karin!! God bless.

Michelle said...

I am praying things get better and you will have some peace and quiet. I hope you can get some sleep. Praying in North Carolina.

Teach said...

Karin, I can tell you only want to protect your daughter and truly want the best for her (I can relate because I am the same with my kids).

Will keep praying for healing for your daughter and a miracle to bring her home soon and that God protects her from all the possible germs from people not being careful. Will also pray that God encourages, comforts and strengthens you to continue on this difficult road! Be blessed!

Praying in Alberta, Canada

The Prieskorn Way said...

Praying in AZ, you will and Kate will get through this and with all the prayer being sent your way, I believe it will be sooner than you think!! Love you all, Nancy and family

trustandobey said...

Hi Karin,
I feel so bad. I told you it would probably be better in your own room.Our Kate's surgery was at Duke Hospital in Durham, NC. We were supposed to be put immediately into a step down room but there was no room so Kate spent the first night in PICU. However, our PICU was crowded and busy and there was really no where to sleep. The next day kate was moved out onto a regular pediatric floor. We then had a room to ourselves with a bathroom and shower and fridg etc. i was nervous but it did turn out to be better for us. The role out bed was awful.So we asked to put Kate in a normal bed(not the little one with crib sides she had been in ) and the new bed was big enough for me or my husband to sleep in with kate. She slept better and so did we.Can you ask for a bigger bed? It might help you and Kate. Our Kate was startling and waking up screaming(due to some med she was on)but she was better with my arms around her. i am so sorry you and Kate and your family are having to go through this. Thank you for being real with us. I was real with my friends too. The adoption community needs for its members to be real and honest because often adoption is not easy. Let's face it, sometimes it is downright tough! When we got home with our Kate and found out within 3 days that she possibly had some major issues, i cried for days. Her surgery was in early Feb and i swear i don't remember doing anything in January but cry. I was completely overshelmed with what we were facing and i didn't even have time to bond with this new child before i was mired down with health issues. I chose to be real with some close friends too. It wasn't pretty but it was truthful and i felt that it was more important. I want you to know that we are all in awe of you and your husband for your faith and perserverance. Your brothers and sisters in Christ are with you!

Elaine said...

I was made aware of your blog from my friends blog K6. Kate and your family are in my prayers. I am so glad you blogged even when you didn't want to, it is an outlet. Let it go girl! You are amazing. Praying you are both home very soon.

Kimberlie said...

I am just imagining how hard this must be for you! I continue to pray for Kate's quick healing. I just wish that I lived closer so I could give you a big hug right now. I am sending lots of prayers your way!!!

Keep it real, and we'll keep praying!

Wife of the Pres. said...

OK, I am loving VCH right about now. ALL PRIVATE ROOMS, ALL WITH WINDOWS AND PRIVATE BATHS. What is up there? Like you said though, it is great care but they do need to get some private rooms!!!

She doesn't understand. But you know what, it is a GOOD SIGN that she is blaming you and that she feels she can show you that emotion. You know that already, but I just thought I'd put it out there. As you said, keeping it real. Does this make it any EASIER for you to swallow? NO WAY!!!

And let's get those chest tubes out! You know S went HOME in 8 days, so it is possible. ALL THINGS ARE POSSIBLE WITH GOD!!! And S had a very complicated Fontan procedure done, not a staged one as you know.

Keep on keeping it real!!!

Cindy said...

Thanks for sharing the good, bad and ugly...but one thing that doesn't change even if the hospital room does, is your love for Kate, she knows you are there for her, stable and giving her what she needs. She doesn't care if you shed a few tears, as long as you are there! But for your sake I hope that couch is comfortable enough and that the stay is short, Kate needs to be home w/ her family soon! Saying a few more prayers for quick recovery!!!! Cyber hugs!!!

mncfi said...

Oh Karin, I just want to grab a great big coffee and something really yummy and not-at-all healthy to eat, and come right over there to give you a big hug. Sadly it's a bit far away, so I will do something much more useful and spend the evening in prayer for you. I'm so sorry you are having a crappy time right now. I will pray that you are comforted by the tenderness of God. Love Fi

Marjorie said...

Bless your heart! I'm surprised a hospital like MOTTs doesn't have private rooms.

Be sure to share your concerns with the nurses and doctors about the little boy disturbing Kate's sleep. She needs her rest to heal.

We're still praying.

James, Dawn and Family said...

Here is a HUGE hug! I'll keep praying.

Joyful Mom said...

Oh goodness, I cannot blame you for feeling the way you do. I would probably be the same. Trusting and praying with you that you get out of there sooooon! Way sooner than you even anticipate. I'm sure you must be longing for home now.

Hang in there, friend. Every day that passes is one day closer to going home!

Meredith said...

Hi there Karin, hope you had a good night last night in your camper! We prayed for you today in my Bible study and many of my friends have been praying for you and Kate through out this past week.
Hang in there!!
Love you, Meredith