It has been a couple of days since my last update. We have surely had our ups and downs since then.
The first night home (Thurs) M and I both slept well! It was such a blessing to wake up feeling somewhat rested. I think M was so overtired that his natural seemingly supernatural abilities to fight sleep would not hold up.
Friday and Saturday night did not go as well. M has quite a cough (surgery related most likely) which means he wakes up frequently. Once awake he feels throat pain and cries and it not easily comforted and does NOT go back to sleep easily. Each wake up is at least 30 minutes. Last night there were 2 or 3 before I went to bed. The last two nights it took him almost 2 hours to fall asleep as well. That is a lot of rocking and singing and praying and back rubbing. Whew, does my shoulder hurt. I am thankful for his small stature.
During the day we try our best to manage pain. He doesn't want to drink much and this is the key to healing so we try to push drinking anything he is willing to drink. Interestingly, we have been offering and begging for him to drink juice. He usually chooses water! He also rejected Jello and the popsicles with corn syrup. We have some healthier ones that the family seems to like better. While I deeply appreciate his taste for real foods without dyes, sugars and other nastiness, keeping his hydrated is the top priority right now, so we will keep trying every liquid we have!
M does best when he is distracted. He went to Sunday School and church this morning and church tonight at that was his best time. If you saw him there, you would have no idea how he is at home and esp at night. I guess that means we need to schedule some playdates this week. It is Spring Break which is great for him to recover, but hard because it pulls us out of routine and strips away a great pain distraction.
My parents were great pain distractors, but they left yesterday so we are now on our own. It was so wonderful to have my parents here to care for T while we are at Children's and to help with things once we were home. M slept great in my dad's arms. The kids love having them here, though they crave routine so usually behavior and fears creep up the longer guests are here. I am so thankful that my parents toughed out the trauma and stayed and served and loved on us and our kids.
Besides people distractions, the TV has proved very beneficial. It seems the only thing he wants to watch is Dr. Quinn. He loves the adventure element of it, although violence on the screen feeds his need for violence in real life so it might not be the best option... but it does distract him.
The other amazing distraction is special gifts and cards. M has been showered with cards and gifts and even flowers after his surgery. I try my best to be time strategic with the cards. When the pain meds are wearing off times are hard. If I give him cards and he totally forgets the pain. We have also learned that he needs to open cards and gifts when T is not around. This really helps. To each of you who has sent something, called, prayed for him, send an email/text/video etc I say Thank You! It means so much to all of us. Please know that even if a Thank You doesn't come in the mail, your thought were so appreciated by Brandon and I and also deeply by M. He seems genuinely touched that people are thinking about him and praying for him.
Mealtimes have been very hard. M wants to eat and his hungry, but then eating seems to hurt and that makes him very upset. Funny enough, the one thing that M has really enjoyed eating is Fritos! Seriously, hard scratchy corn chips! I think the salt must be soothing, at least that is what I can guess.
We learned something incredible at Children's... the "Tylenol Cocktail." Wow! So basically you measure out the Tylenol in the syringe and then you suck the Rx into the syringe too (measuring first of course). M can't taste the Rx and willingly takes the meds. Brilliant! Huge answer to prayer! I didn't realize we would go through SO MUCH Tylenol. I thought I bought a lot, but might need to make a run later this week for more!
In case you are seeing this late posting and wondering why I am not sleeping, there is a reason. I am staying up for the 11:30 Rx dose before bed. This way I only have to set one alarm for 3:30am. It is hard to wake up twice in the night (besides the other wake ups which happen) to an alarm. I like staying up much better. Tonight I have so much to do, I am not even feeling sleepy.
If you would like to continue to pray for him that would be great. Please pray that his cough would end allowing him to sleep better. Please pray that the surgery sites would be healing and the pain would be less and better controlled by meds. Also, pray that he would keep drinking!
We would also love some prayers for T. She has been a hot mess since we got home from the hospital. She is very VERY needy and cries and screams A LOT! Wow! It is so hard. Amazingly M has been doing better than usual with handling her neediness. Please pray that her heart would feel at peace and that Peace in general would reign in our home!
Thanks so much for walking the journey with us!
*OK, I just read this post quickly since I noticed I typed out the kids names in full a couple times. As I read I thought, "What a downer!" Sorry if this post is a downer.
I will tell you something fun to end. One of my best friends just found out she is having a baby girl! We are so excited for their family. I decided to sort through all of my kids outgrown clothes to see if there was more I could part with to share with her. I found 4.5 paper grocery sacks. Pretty impressive since I have send several boxes to my niece Baby A. Anyway, along with the sorting I am labeling exactly what is in each bin so I can find it easily if someone wants to borrow something, or if a LONG time from now I need little clothes again. I am not ready to part with all of them just yet, but it feels good to slowly let go. Taking on this project right now might be silly, but it is sort of mindless and in between all of M's wake ups last night it was a fun distraction for me!
this past month, part 3
1 week ago