It Usually Gets Worse Before It Gets Better....Right???

Our second night was even more difficult than the first. ARGH!!! Sam required oxygen and his desaturations without it went into the 80's, sometimes lower. So we got the oxygen on but Sam decided he was ready to do battle. My feisty little warrior, (aka Houdini) seemed to work out of every configuration of hand restraints we could come up with. Every time he could get enough movement he would add twisting his upper body and would pull his oxygen off. If that didn't work he creatively figured out how to move his head enough and while using his tongue to assist he would remove his oxygen, setting off the wonderful beeping followed by the struggle to again get his oxygen on and regain positive oxygen stats. Wouldn't you think all the fighting would just naturally bring up the oxygen level...I'm praying that is what he is working on.

I took the first shift of the evening, Ben took over to allow me some sleep at about 10:30. By 11:00 Ben was done, patience gone, so I stepped in. Sam drifted off to sleep but then woke two hours later to start the fun again, Jeff jumped in but Sam had him so worn out by 2:30 p.m. I think he was considering wrapping tape around his head to hold the oxygen on. I stepped in again...knowing Jeff was going over the edge and Sam needed his pain medication. A few hours of sleep and we were up again, and again, and again... Needless to say I managed to get through the rest of the night but the lack of sleep and stress finally took it's toll at about 10:00 a.m. when I snapped at everyone around me as I was desperately trying to get Sam to poop for the 9th try with no luck, Jeff brought me Children's Pepto Bismol and hemorrhoid suppositories instead of the stool softener and glycerine suppositories I had asked for because he didn't ask for help at the store so I broke into tears, said a few things I should have never said in my life and generally felt like a failure. Oh crap, this is hard!!

The night schedule really messes up the day schedule which includes: Sam's pain management, incision management, monitoring his oxygen level, changing the pulse ox every 4 hours, turning him every 2 hours, respiratory exercises every half hour, feeding him, massaging his legs, bathing and toileting (which includes desperately trying to get this child to poop). I have never prayed for poop...but I am now.

I am trying to keep my focus on Sam. This is no walk in the park for him and everything I'm going through can never equate to what he is dealing with. But when you're Mom and your focus is only on one thing the balance of the home goes completely off kilter and the snowstorm only added to the snowball effect that was already occurring in our home.

We regrouped, Jeff went back to the store and asked for help this time, Danielle jumped in without the complaining this time and I washed Sam's hair and bathed him, then took a much needed shower myself, had some wonderful pancakes that Jeff made when he came home and took a 3 hour nap while Danielle sat with Sam. I once again felt human and then had to apologize to everyone who unfortunately was damaged by my breakdown earlier.

We sat down and enjoyed a wonderful zucchini lasagna dinner, a little garlic bread and some fresh/frozen green beans from the garden that my sister had put into our freezer, we talked over our frustrations and options, prayed, and came up with strategies to cope as we go into yet another night. Sam loved the zucchini lasagna and finally ate a pretty good sized meal.It will get better, when his lungs gets stronger, his pain less and his ability to work with us more. Life right now is challenging but we will work it out. I also want to thank the Schlenvogt family for their care package of food, it was enjoyed by all. Thank you to Grandma Mayer for keeping the rest of the family fed while Sam and I were in the hospital and for having a welcome home dinner prepared for us. We are very blessed with a wonderful family and amazing friends. WE LOVE ALL OF YOU!!!

We have had numerous friends and family offer help. Never knowing what each day is like it is hard to determine sometimes where help is needed. During the week Grandma (God bless this woman's soul) will come over to assist. On the weekends, Ben and Danielle would be happy to have additional help which would allow their schedules to free up. For those of you who offered a meal, we do have a large freezer in the garage (thank you Grandma and Grandpa Mayer) or if you would like to bring something over hot please call and let me know that morning. Sue Waldkirch I will need you to make a grocery run for Sam to Slow Pokes this week. From everyone I ask for continued prayers. I want to thank everyone for their emails and comments here on the blog, as much as I would love to respond to each of you I'm sure you can guess from the updates that just isn't possible at this point. I never even got to send out "Thank You's" from Sam's birthday party but I hope everyone knows how much that day and the gifts were appreciated. I want to end this post with a passage I received from another family member Chris Russell, which gave me a wonderful sense of calm this evening:

Philippians 4:6-7 " Don't worry about anything; instead , pray about everything; tell God your needs and don't forget to thank him for his answers. If you do this you will experience God's peace. His peace will keep your thoughts and your hearts quiet and at rest as you trust in Christ Jesus."