Today began wonderfully! Wanna know why?! Because Cannon and I got about as good of a night’s sleep as is possible in a hospital. I neglected to mention yesterday that right before shift change last night……Cannon got his N.G. tube pulled out of his nose. That went a long way towards helping him feel a bit more human again. And helping him sleep. I, then, conspired with his nurse and tech to let him fall asleep before we bugged him. Let me explain. Cannon sleeps like a rock usually for the first few hours and this is especially true when you consider how little sleep he’s had over the past few days. And the nurse and tech had a bunch of required stats and such to get done…..which he hates and therefore screams about. So, we let him fall asleep and then we sprung into action. The nurse gave him his scheduled dose of Valium through his I.V. (something he would usually scream about due to how close she has to get to him), she listened to his chest and belly (again… a “no-no” with the touching), his tech got vitals (another potential scream fest), and put the pulse ox on his toe (the absolute devil in his world). When all that was accomplished, the nurse and tech’s bases were covered mostly for the night and they had permission to leave us alone. They could just check the pulse ox’s monitor as needed to get the vitals they needed, when they needed them. I think one blood pressure was done later but that was it. After all this was done, I roused him up just enough to give him his night time meds. 3 syringes and 2 pills later……we was quickly back to Dream Land. And we were patting ourselves on the back for coming up with a great plan of attack. From then on out, it was nothing but zzzzz’s and I was thrilled. He even slept over 1 1/2 hours later than his usual! It was fantastic!
When we woke up, he looked so much better. His coloring was still a little off, his eyes were still squinty (something he does when he doesn’t fell well), and he was CLINGY……but he looked SO MUCH BETTER! The thing that was evident immediately is that he had much more to say today. And with functional speech, no less. He told me he wanted milk, he wanted something to eat, he wanted a video, and which video he wanted. He even asked me “Where’s my Daddy?” I LOVE the week after a clean out. It’s amazing the difference in him. I am not saying he is normal but you can just see these amazing glimmers of potential. Before the collapse back to reality a week later. When his tummy begins its transition back to blah! I HATE that part! It is the worst! If you are just joining us on this journey and hadn’t read some of my much earlier posts, you may not know. From what we have been told, Cannon’s tummy issues are a fact of his life…..not something that can be fixed. G.I. issues are a problem that can accompany Autism and in his case, he got one of the more extreme cases of these G.I. issues. We have tested him to death for any and everything, we have tried everything possible with diet and medication, and even contemplated surgery. But as our world-renowned G.I. doc says, “He will just have to have these clean outs periodically. There is nothing more that can be done.” And we have no choice but to accept that for now. But, as I mentioned on Wednesday, we are just incredibly grateful that we made it 5 months since his last hospitalization for this issue.
So, Cannon and I did all those things he asked for, called Mark and Townsend to say “hi,” and put on our shoes to take a walk. We walked the loop around our hall of the hospital and then headed for the playroom. By the time we got there, he crawled in my lap to rest. His color was weird and he didn’t look good. He got down to play for a few minutes and then crawled in the lap of a volunteer. Much to her surprise. My punkin is such a lover, it surprises people sometimes. 🙂 Then he gagged a couple of times. The Child Life Specialist that I was talking to gasped! My heart skipped a beat! I did a super fast scan of the room for something to grab that he could hurl in. I couldn’t believe he was going to puke on this poor girl. But he didn’t! He swallowed very hard a few times, made a few sour faces, and came back over to me for more snuggles. Thank goodness! I asked him if he wanted to go back to the room and he said no. I asked him if his tummy was okay or ouchy. He said ouchy. And got down. I figured this was the beginning of the residual effects of the medicine. Ten minutes of so later, though, he was singing some songs and playing like nothing was wrong. This kid is so crazy! He always keeps us guessing! 🙂
I had multiple talks with our Resident doc today. We discussed things like when was a good time to discharge Cannon, was our G.I. doc going to round, when could we pull his I.V., could we go home with pain medicine just incase he began to react, could we have a standing x-ray order written for the Radiology Department (for next time), and would we be trying anything new. All our questions were answered throughout the day by either him, the Attending doc, and/or our G.I. doc. Cannon was doing well by mid-day, surprisingly enough,……so it was decided that his I.V. could be pulled. No need to keep hanging onto it incase he had a meltdown and needed Valium. We had to remind Cannon constantly while she was unwrapping his heavily taped I.V……that this was a good thing. We were taking it off. The hardest part of this process is not the actual pulling of the needle. It is coping with the bandage applied afterwards. Those darn sensory issues at work again! So, I tried just holding the gauze myself and applying pressure. But the needle used was big and it needed to be pressurized for about 10 minutes. This was not a hit with my child and he fought to get free and blood splattered. So, he got a bandaid instead and I held him as still as possible until it could be pulled off. Then finally, he got to take a shower! And boy, did he need it! After a good scrubbing, diaper change, rub down with lotion, and fresh clean clothes……He was a new man! And he looked like he felt even better, too. Now our mission was to hang around a couple extra hours to see our G.I. doc. He is desperately hard to get a hold of and when the hospital called his office to get us a follow up appointment……they couldn’t get us one until December. So, we were so grateful he came by to check on Cannon. He decided we are going to try one new med. To see if it will help with the issue he has of getting too much air in his intestines. And we are going to try an extra teaspoon of his prebiotic powder to help with the same issue. I am grateful for any new ideas. They won’t help with the overall picture, but if they work, could improve his day to day wellness somewhat. We discussed several other details of his treatment and ended our stay on a good note.
I am beyond ecstatic that after 6 hospitalizations for this issue……this week’s began what I hope is a new era. One where he doesn’t react to the Go Lytely after he finishes his treatment. I mentioned yesterday how horrible the 2 days after have been every other time. I mean excruciatingly bad! And today…..pretty much nothing! It is a huge load off our shoulders and we are so thankful he doesn’t have to go through all that cramping and pain. There is no rhyme or reason as to why it didn’t happen. But I don’t need a reason…..I am just glad! Tonight he crawled into his bed and said with a smile on his face, “Cannon is home.” Melts your heart, doesn’t it?! Sure melted mine! Then he said, “Cannon has a nice, cozy bed.” Yes, you do buddy! Yes, you do! And now Mommy is going to go enjoy hers! God bless ya’ll!
Soooo glad you’re all home in your warm cozy bed!!! luv u bunches!!!