Tuesday, September 9, 2008

praise the lord and do not disturb

Do you ever have times in your life in which you wish you could put up a "Do Not Disturb" sign? I feel as though I have reached an imperative point in my need for sanity, in which a sign such as this is necessary. Granted, I know that while in the hospital, all the nurses and assistants have to do their job, and it's all in the name of taking care of Ethan. However, there is a grouch simmering right below the surface of this "smiling" face that wants to shout - DO NOT DISTURB!

It's 8:30 at night, Ethan is extremely restless because of the new rash that has developed on his arms and legs. I finally (and I do mean finally) get him to calm down and fall asleep... I lay him in his hospital crib. Not 30 seconds later, someone has opened the door to our room (which has a sign that indicates that Ethan is sleeping) and proceeds to change the large noisy trash bag out of the large noisy trash can.... Ethan wakes up. My cycle of getting him calmed again, starts over. Insert here an extra 1 1/2 of work for mommy. And the worse part... the trash can wasn't even that full.

Do not disturb.

It's midnight, Ethan has been asleep for about 2 hours. It's now time for vital signs (blood pressure and temperature check). The side rails of the crib go up and down - however without a certain finesse, they are quite noisy. One side rail goes down... then up... then down. Then the other side.... up... then down.... then up.... then down. And while Ethan can sometimes sleep through his vital signs, the continuous raising and lowering of said side rails (why all of this was necessary, I don't know) has now startled him. He's awake. For an hour.

Do not disturb.

It's 5:45 in the morning. Again with the side rails. What is going on?! In the 6 weeks we've been here, this has never been an annoyance before.... at least not to this degree. He wakes up. Again, for an hour.

Do not disturb.

As I lay him back in bed, somewhere around 7 this morning, the inner grouch in full grouch-mood... I find, next to where I lay Ethan's sleeping body, a small cap off of one of the syringes of saline that is used to draw his blood (from his central line). This is the 4th time this has happened in the 6 weeks we've been here. There is even a large sign on his bed that advises the nursing staff to be extremely careful about what they "leave" in Ethan's bed... because EVERYTHING GOES IN HIS MOUTH. Needless to say, anger ensued. The grouch wanted to run out into the hall throwing the tantrum of the century about how unacceptable it is for pediatric nurses to be so careless as to leave cheerio-sized plastic caps in my baby's bed (for the fourth time in as many weeks!), that he'd surely find, then put in his mouth, then choke!


After much debate within myself, I decided to wait until the shift change later in the morning, to discuss what happened. That's when the nursing manager and other higher-ups that I'd need to talk to would be clocking in. So I tucked that plastic cap under my pillow and went back to sleep until 9:00. And I'm overall better for the extra dose of sleep, and was able to be a bit more diplomatic (though only slightly, I'm still a mom ya know!) in my discussion about the choking hazard.

Ah, yes... the concept of Do Not Disturb... my son.... my sleep.... my life! Sounds extremely appealing to me today.

But there is a silver-lining to my bad mood today. AND IT'S BIG!

Ethan's counts have started coming in! We found out yesterday that his counts (ANC) were at 130 and today they are at 120 (it's understood that they will fluctuate slightly from day to day). Tears of joy covered my face when the nurse came to share the news yesterday. It is starting to happen.... we are so excited. We can go home once the numbers hit 500 for more than 3 days in a row and he remains fever-free. Thank You, thank You, than You Lord!!

And thank you for praying for this specific area!


Anonymous said...

Praise the Lord Kasey! I know I haven't posted lately, but we have been diligently praying, watching, and waiting with you!
Thank you Lord for your powerful answer to prayer! You have been so good to this Godly family and I continue to pray for your goodness upon this faithful family! Lord, give Kasey, Adam, and Ethan the much needed rest and breath of fresh air they need! Your grace is sufficient and we praise your name for your renewed strength each day!

Cathy Lang

Janelle and Ella said...

Oh Kasey, I found myself getting angry and frustrated as I read this post! And then teary eyed as I read the last paragraph wanting to jump up and down!!! Thank you Lord so much!!! I am still praying daily.

Sharon said...

Awesome Awesome Awesome, what great news to read first thing in the morning. A great way to start out the day. I'm happy and thrilled for you and your family and all of us following baby Ethan's story. This is just a reminder that it's in God's time. When we believe, God always shows us his love. AJ's WBC would go up and then go back down a bit. Are they administering GCSF (to be honest I couldn't remember if they did after BMT, but I think so)? Not long before you all can be out of there! And until that day and everyday thereafter, that it'll just get better and better!

nr2769 said...

Hi Kasey,
Last night as I was rocking my daughter to sleep we said our prayers and at the end of "Our Father" we prayed for Ethan's cells to engraft. And look! Today I read the blog and it looks like this is happening.....I always wonder if God can hear me and if he really does answer my prayers. I will keep praying so you and Ethan can go home soon!

-Nicole Rosario (The Hartford)

P.S......I think I would have said something to the person changing the trash! And the nurses. That is careless!

Lorri said...

Hi Kasey...rejoicing with you over the Lord's healing in baby Ethan as the new cells graft.

Your post made me chuckle because I unknowingly also wrote a "sign" post on my blog this morning. I think you need one like I was talking about: a big old wooden one that says, "Restoration in Progress." Yes. Amen.

With His love, Lorri

Dave and Elaine said...

Praise the Lord it's beginning to happen! Praying for that three-day 500!

Hollie said...

Oh girl, I was feeling every bit of your pain and getting so upset for you while ready your post....then I got to the best part!! What a great ANC report!!! Praising HIM for this wonderful news. I am praying his ANC jumps to 500 very soon! GO ETHAN GO!!!!!

But, what is up with them always feeling the need to change the trash can at 2 AM?!?!?! It NEVER fails!

A day in the life of said...

Kasey, this is wonderful news about Ethan's blood work going up. What a great step in the right direction! As far as the errors and inconsideration of the staff,you have every right to be frustrated. I will pray that it will not continue to happen to "you all" as well as the other children in the hospital.

Mandy said...

Today is one of those "do not disturb" days for me and I am seriously empathizing with your frustration. I also have tears streaming down my face as I praise the Lord with you about the count levels. Praying...

Sara said...

Oh Kasey, My boys will be so excited to hear the news! As far as your smiling "grouch" - I hope you have a way to look back at these posts years down the line, because you have such a gift for writing that my sides we splitting as I chuckled through your story - which I totally know was not funny at the time! I will pray that your nursing staff will be thoughtful as they go about their duties, and that Ethan can sleep soundly tonight so both of your bodies can get the rest they need.
With love and prayers,
Sara R. & family
Joshua 1:6-9

Megan said...

Anytime I feel completely frustrated with my baby and husband due to lack of rest I immediately think of you. You have kept yourself together so well through this all. Thank you for sharing your true colors with all of us. You are allowed to have these feelings and they are NORMAL. I bet you can't wait to be back in your own home. God Bless you.
I found a verse I have been dying to share with you since the other day: "The Lord is not slow in keeping his promise, as some understand slowness, He is patient with you, not wanting anyone to perish, but everyone to come to repentance." 2 Peter 3: 9
I really feel God wanted me to share this with you since I've been really pulled to share this with you.
Praise the Lord about Ethan's numbers. I am so thankful for that news!!!!!
Always praying for you!

Carrie Comstock said...

Yahoo!!!! What great news. So, so thankful for this wonderful news today.

Lots of love to you!

Praying you both have a very quiet and restful night tonight :)

huntsouth said...

How good our God is!
As we have been talking about those numbers for days, wondering WHEN, praying for SOON, impatient to see the answer, in God's time, He gives and gives. Faith turned to sight is such a sweet blessing.
We rejoice for this next step in your journey. It doesn't really matter that Ethan may never fully understand what happened to him as a baby--this time is for so many of us, our families and our faith. Glory to God!
Though you may not be too thankful for Ethan's current ability to find and ingest, I have to smile about his age of dexterity. He's made it beyond our wildest dreams!In years to come, may you fully appreciate the chance that Ethan will have to eat pennies, lost teeth, whole, giant candies and wads of paper! We will pray for sleep for you all. Thank you for sharing your life with us. Love, the Hunts

Marge said...

Oh How Happy I AM For You and Adam to see the light at the end of the tunnel. I'm just thrilled to see what great thing the lord has done for all 3 of you


Randi said...

Awesome! We are praying his ANC numbers will continue to climb and that you and Ethan will have a peaceful rest tonight.
The Dunn's

Elizabeth said...

Oh Kasey, I was feeling every bit of ur pain and getting so frustrated for you while me reading your post... Then I got to the very best part!! What a grat news!!! Prasing him for his excited news!!!! We will pray for sleep for you all.
Elizabeth & Family