Flying by the seat of our pants

We have been home for 5 days. Non-stop…survival…flying by the seat of our pants…are all good descriptions. My best description is we are in “Catch up/Keep Up” mode. It’s an adjustment to jump back into the regular schedule of things after being in hospital life for over 2 weeks. The girls needed extra attention, the kids all needed to get reacquainted, then there’s the house. We are still recovering from the construction. The first 3 days were full of appointments for Micah, setting up home health, trying to get his expensive formula covered by one of the programs he qualifies for, and seeing his primary pediatrician and for our home, needing a new water heater and water main. Then there’s the process of learning how the G-tube fits into life and the care that goes with that. What was that beep and how do we fix it? Watch out for that cord…don’t let it get pulled! Don’t forget to clean his surgery site three times a day. What schedule to we want the meds on and what works for the ones that are every 8 hours? Oh, and speaking of meds. Now that we are several day away from this incident it’s easier to laugh at it.


We got home on Tuesday around noon. Micah was due for his next dose of valium at 3:30pm. This was the first med that needed to be given since being home. So at 3:30pm Micah received his valium. We then went to look at the other meds, the doses and the syringes. We then realized that we were not given adequate syringes to administer the other medications….OR the valium we had just given him. GREAT! Randy called the necessary medical personnel and, yes indeed, Randy and Micah were heading back to the ER at Valley Childrens for observation. Our 3-1/2 hour “visit” home was over. I honestly did not have words for this situation. I could not call anyone. I almost could not think about it. All I could do was stay calm and make the evening the best possible for the girls. Once Randy and Micah were out at VCH they hooked him up to monitors and watched him. He was going to have to be observed for 6 hours from ingestion based on his age and weight.


The first 2 hours Micah was very happy and relaxed. He was talking to Randy’s pants, laughing and having a good time. The nurses thought he was hilarious. The valium had relaxed him so he could move his arms in ways he normally cannot due to the CP so he was looking at his arms in amazement. The expressions on his face were priceless. He was indeed having a good time. The next couple of hours he took a peaceful nap. During this time all his vitals began to return to normal and now they had to just wait it out. At this point Randy was ready for some of his own valium, Airborne, mask and anything else that would protect him from the surrounding germs. They were in the middle of the ER during the peak of RSV season. All he could hear around him was coughing, breathing treatments, and diagnosis being given of pneumonia and RSV. At one point he heard someone was there for a dog bite and he was ready to ask if he could be moved next to the dog bite injury. The last thing we need is for Micah to get RSV or for any germs to be brought back to our house from the hospital. So while Randy and Micah were waiting I was home praying for health. About 7 hours from the time they arrived they were released with a stamp of “good to go”. The doctors said that since Micah is so stiff that he probably just absorbed the extra medication and it did not really phase him. I was relieved that our family would all be under one roof for the night. We are expecting this to be the last overdose he ever receives. It’s happened to everyone in our family before so now we can check this off the list of life experiences and move on. Oh, and yes, we have been given several of the correct size syringes. We are all good to go.


We have a wonderful friend who has offered to set up meals for us as we are adjusting to the various changes, learning the new equipment and Randy returning to work. If you would be interested you can contact her at nates5bs@gmail.com .