Wonderful, Memorable Moments –and other stuff too!

Sorry there was no update yesterday, but Wednesday night I had to do my “12 hour shift” to prove I was capable of caring for Elias! No really, Katharine and I both have to do this. The real comical part of my shift is that while we had scheduled them with the unit discharge coordinator, it never apparently made it to the staff. So as an experiment I decided not to breathe a word about and just go on with things as I always do, which is to care for Elias completely. I mean they do not come in and check on alarms, be it the vent or other so I knew it was not a big deal. Sure enough I did the whole thing. I even got lucky and every now and then we get a really lazy nurse who will ask if we want to give his medications. I said sure why not and she left them out of the lock drawer and on the nurse server, reminded me of the times and that was the last I saw of her until 7 am. They had no clue I was to even be doing this and when I asked at the end of the shift they confirmed what I knew to be true. So do I really need to prove myself? I am almost expecting them to give me a difficult time signing off on this. It will be an interesting confrontation if they do.

So what has been going on with Elias! Well, you know that it can never be just status quo with him, that is too boring. Wednesday night the stoma area of his colostomy began bleeding so much that it was running down his side. The resident came in and of course was useless. So it was decided that the ostomy nurse should come and look at it. We waited all day yesterday having paged them twice with no response. Then again today they were paged twice before they finally showed up. Apparently, someone neglected to inform me that they spoke to someone this morning and said it would be late afternoon. As for yesterday, well the ostomy nurse responding said she was off the day before so she could not speak as to why. Anyway that stoma had been bleeding off and on since. Unfortunately there isn’t much that can be done except apply more stomahesive powder to the area and wait for it to subside. In the interim the doctors were concerned it might be something other than irritation & breakdown so cultures were done. There is a common bacterial growth that showed up positive. It is nothing really, it was caused by the antibiotic Elias was taking for the UTI and this is a common side effect. So now another antibiotic must be given for that in addition to flagyl to help with the loose stools these antibiotics can produce. Isn’t it great when you have to take a medicine because of another medicine.

One more bit of bad news, then I promise we have something very special to share. We finally got to talk to the audiologist today. The plan going into the discussion was to repeat the ABR around the 17th of November. That plan was no longer an option as they had reviewed the history and decided it is unsafe to do the procedure under sedation, but anesthesia would be acceptable. We were misinformed last week about this process. The ABR was to be done in radiology without and real support measures available. With the trach Elias also is not able to have procedures done there. The next available anesthesia ABR is sometime mid-December. Given the upcoming bronchoscopy that Dr. Wood plans to do is shortly after the first of the year it has been decided, with us involved in that decision to coordinate it with that date. It was disappointing and difficult, but honestly a few weeks will not be much difference with intervention and success. It just us not a safe idea to do this on its own especially with another procedure on its heals. It is the right thing for Elias’ safety and that is the more important issue. We also had the opportunity for a better explanation as to why we needed a repeat. Simply put the ABR is incomplete! The full frequency range was not performed and the right ear was not tested at all. So essentially they did the bear minimum, but did not do everything they could. That really infuriated us especially since they were so reluctant and disheartened about doing this to begin with. They were being forced by the state to perform this. Unacceptable practice is what this is. Heads are going to roll for this!

Yesterday was a great day for Elias and therapy. He really showed off how much work he has been doing. For PT he was doing some great sitting and corrections as the PT tried to knock him down by pushing the mattress in the crib down. Then he did some really great leg work with weight bearing and pushing himself up with this legs. Then in Occupational Therapy while the OT set up the floor mat Katharine was holding Elias and I was playing “boo” with him. Going back and forth on either side of her head. Then Elias did something that absolutely shocked us all….Katharine was holding Elias so that he was facing her and he was sitting upright. He all the sudden crouched down in a tiny ball then jump up with his torso straight and just laughed. Then he repeated it again, then again and the OT realized that he was playing “boo” with me. It was precious, much needed and brought a few laughs and tears to our eyes. No one had ever taught him to do that, but he figured it out based on the exercises we have been doing with him. It was amazing! Elias is also getting much better at sitting. He sat up in his bed for 25 minutes today without falling over. He was loving it! Now we are working on getting him to figure out how to get from the lying position to the sitting. This is a bit challenging, but the PT has a few tricks up her sleeves. Finally in OT we took a chair and put a stuffed animal on it and had Elias pull part way up and rest his arms on the chair while putting weight on his legs. She admitted when we tried it that it was advanced for him and she wouldn’t be disappointed if Elias did not do well, but with the other stuff he was showing she wanted to see what he would do. He did have a little issue at first but seemed to enjoy the play exercise. Again so wonderful to watch him do all this. It did our hearts good to see him like that.