Remember how I mentioned the lack of couch removal on Grayson's part the past week or more? Well, it was about the same when we returned home. I continued to monitor his stools and push the fluids and food whenever he was interested. And then all of a sudden 7 pm hit and he was much more whiney than days past. He really was uncomfortable. I figured he was super tired and brought him upstairs.
For the next 5 hours he was miserable.
His whining was indicative of pain. I mean, EVERYTHING aches when he is on any steroid , but this was worrisome. In the past, just being comfy and relaxed on the couch or bed was enough to pass the aches and pains. As long as he didn't walk much he didn't seem to overdo it (at least that is how he seemed to handle it all). He had always been able to tell me what area hurt him in particular. Last night he just repeated over and over "It hurts, mommy it hurts". It was so hard to watch and listen to. It was clear it was mostly his lower body bc he kept adjusting his body as if to push away the pain through his legs or hip or butt. I kept asking him if it was his butt (freaking out that his constipation issue led to a tear w/ internal bleeding!). He said no.
This went on for 5 hours, every 10-15 minutes. He would get comfy, you thought he'd fall asleep and then he would contort his body to push away pain or whatever was going on. Then once he fell asleep it occurred every 40 minutes. He wasn't in overwhelming pain, with screams and uncontrollable rants, but it was different from what we had experienced thus far.
So G and I did not sleep much at all. He woke in a decent mood but ready to hit the couch again. I made him walk to the bathroom to try potty, put his clothes in the hamper and to the couch once we reached the main floor. He was eager to rest. I thought for sure he would take his first nap within minutes of my departure. I determined on my drive to work that I was most def going to put a call into his nurses. I needed to find out if we could administer some pain relief, just in case this new reaction lasted all day long or stole another night of sleep from him.
By 8:30 Mamac called me stating he was shaking. I knew he had received his Pro-Air from Charito before he left and sometimes that can do that to him. It is a steroid. It was occurring whenever he held his cup to drink his milk. As we were on the phone it subsided. As if I dont have enough to worry about from work. He is on my mind all the time! I worry so.
Then she called to say Caden was gagging. Huh? I told her to feed him and let me hear what he was doing. Ah, he was simply reacting to the first nibbles of home-made breakfast---pears. Much diff texture than store bought. I stayed on the phone w her a bit longer and before she knew it he was chowing down. It just took him a few bites to realize it was the same fruit he has always enjoyed just felt diff on that sensitive tongue of his. As if the mommy guilt isn't bad enuf in me for NOT home-cooking Caden's meals, here he goes reacting not so excitedly about IT WHEN I DO! I can't win! And to think I was going to make him some carrots tonite!
When I finally got the chance to call the nurses about G and his sleep-deprived evening I was so relieved I did. Nurse Jennie's first question was to confirm whether we had finished up our Dexamethasone Monday pm. Yes, we did. She continued to explain it as withdrawal. His body is simply going thru withdrawal. How sad for my 2 yr old. Think about that! That little body. Ugh. She asked if he was having some shakes at all in his arms or legs. I concurred. Yep, withdrawal. And she agreed that he has been really good about locating his pain points and from the kind of night I described to her it indicated that everything was going at him at once. Very typical reaction, just not one we had been a part of before. She told me if he seemed to be heading toward a similar evening tonight we could give him some Tylenol. With fine print instructions of course, it is never that easy! We can only give him the Tylenol if he did not have a fever, even the slightest. We don't want to mask anything else brewing. An epsiode like last night could go on for a few more days til his body adjusts to being off the steroid. My poor guy!
And we also talked about stools. As long as the blood I see is bright red it is new blood. Most likely an irritation tear or swell he caused while pushing on Saturday and Sunday. If I see dark red or black blood then that is a sign of internal bleeding (old blood) and we need to call them immediately. New blood is better than old blood. Got it. Now let's hope I don't see much more of any blood!
But this story really does get better! By noon Mamac called me again. But it was actually G on the other line. He gleefully told me, "I play trains mommy! I walking in the kitchen! I watching movies! I eating and eating (and then named all he had eaten). I use my muscles!" He sounded great! He was so happy to talk to me. And before he handed Mamac the phone he said, with his sweet voice, "Mommy, I love you so much!". The tears were forming when he was sharing his day and those words turned the faucet on! Oh, I love my sushi!
I left work on time to help out in Triston's classroom. And to take a peek at his Feeling Journal (the school version). He shared some deep feelings with Mrs Curtin in school yesterday and with myself on the walk home. I wanted to assess the situation. After our chat we headed next door to the other 4 yr old prek room for their combined cooking lesson. It was really nice to be elsewhere. Triston had no idea I was coming and he was surprised to see me. Happy, too. Another guy I missed so much today.
As soon as we walked in the door Grayson lit up! My boy was back in action. He has been taking his time moving about the living room. It is pretty clear he is not as achey as he was. He has some trouble getting up from a seated or squatted position (we have seen that before) but walking around just fine. He tried to run and dance when a fav song came on but immediately fell. He even has some trouble lifting his foot up to step high. One thing at a time baby boy!
Oh, and I was also greeted with the typical ginormous smile from my littlest. Caden always spins that frown upside down! He cracks me up. The one who has no clue that my mind raced in a million diff directions today, I worried from here to the Arctic, and my emotions had to remain bottled up for the most part. He is so innocent, yet so therapeutic with one simple smile. Luv him!
And just bc we are off the steroids DOES NOT mean we say goodbye to the steroid - chunk cheeks just yet,
Gotta love it!
That was my Tuesday...it felt like a whole week wrapped into one day. How was yours?!
AND I got one reprot card done...13 more to go!
No comments:
Post a Comment