6/21 - Sleepy McSleeperson Strikes Again

So I mentioned last week that I found Leo's night nurse sleeping when I came in his room on my first day back to work. To start my second week back to work she fell asleep while I was in the room this time! I came down to pump and had been in there about 10 minutes. She was sitting at the desk watching TV and for about 4 minutes she dozed off. She was leaning on her hand doing the head bob. I texted Terry to come check it out and she woke up when he came in the room. At least she was not sound asleep this time. Still if she dozes off while I'm in the room what does she do when I'm not there? A big part of me wants to replace her, but I'm worried the next one will be worse. I hear lots of scary stories about home nurses and I'm worried we will get one who is mean on top of being sleepy. At least this nurse is a good person who genuinely wants to do the right thing.....but still her chances are about to run out.

So on top of that we had a really busy week:

1. Monday we saw Leo's pulmonologist and he made a few changes. Leo will now eat 155ML (about 5 ounces) 6 times a day instead of 115ML 8 times a day. So same volume per day just less feedings. So far he is doing well with the change. He also had his heart rate monitor changed to alarm at 180bpm instead of 170bpm. They said he should not be going over 180 unless he is upset. He goes over 180 from time to time especially when he is hot so the Dr. might be ordering some more monitoring of his heart.  Leo' also did a passy muir valve trial in the office. The valve goes at the end of Leo's trach and allows him to take air in through the trach, but exhales and coughs go out through his nose/mouth. The air passing through Leo's vocal cords allowed him to make the cutest baby noises. We heard him coo, cry and cough like a normal baby. It was very heart warming. He did about 30 minutes in the Dr. office and is approved for 20 minutes per day at home. Before this the longest he had gone was about 2 minutes so it was a big leap forward :).
2. Tuesday we started off with a visit from the developmental therapist. I'm not sure what her role was supposed to be, but she did not offer any help. Leo was upset and had a really high heart rate the 20 minutes she was there. She seemed like she had no clue what to do with him and just said she would talk to the other therapists about maybe stopping by one of their appointments. The whole appointment was frustrating...obviously he has developmental challenges so she should have been able to offer some suggestions. After she left we headed to the Neurologist. I think I was more pleased with the visit than Ter. They had scheduled our appointment with the nurse practitioner instead of our neurologist but I was pleasantly surprised when our neurologist walked in and we never had to see the APN. She reviewed Leo's MRI with us. She didn't really offer any insight to his condition or what we can expect in the future, but she did say his brain was progressing and growing appropriately. Since we are worried his condition is progressive, this is good news. The MRI read out mentioned protein and fluid buildup in the front of the brain. I was really worried about this, but she explained this happens in lots of typical children and she was not concerned...so more good news! The MRI also mentioned a non-functioning artry leading to the brain...well that just sounds bad, but she said most people have a dominant artry and this is also not concerning. At the end of the visit we told her about what the University of Washingtin said about PTCD. We could tell she would not have come up with the diagnosis on her own, but after reading about it, she seemed to think it sounded very reasonable. She said our next step is just waiting to see what that genetic testing tells us.
3. Day number 3 included Ter and I working a half day and heading back to Peoria to see an Ears/Nose/Throat specialist. We thought Leo was getting sick again because his temp was over 102 that night and Tylenol was the only thing bringing it down. We waited a long time for this appointment so we still wanted to go, but I went ahead and called his pulmonologist to see if they wanted to see him while we were in Peoria. They said after the ENT stop by the hospital and get labs done. The audiologist we originally saw to test Leo's hearing had explained after a child is shown to have hearing challenges, it is the ENT's role to figure out why and determine if anything can be done to help. By the time we finally saw the doctor Leo was not doing very well. He was upset and his heart rate was reaching 200bpm and his fever was back. The doctor was very kind but he seemed overwhelmed by Leo. He kept asking us how we were doing instead of talking about what was going on with Leo's ears. In the end he just said he needed a complete hearing test before he would proceed. We had one scheduled for the next day, but the ENT said there was no way Leo would sleep through the whole test....we had already tried that once. So he said we should get the sedated test instead of wasting our time. I thought good idea, but why couldn't someone suggest that when we were in the hospital for 3 months and sedating him for the MRI already....frustrating. The earliest they can get us in for a sedated hearing test is September. In addition to the fever, Leo's eye was still not looking very good from the scratch last week. The ENT was right next to the eye doctor office so I called them. At first they told me they could squeeze him in the the next day at 3:00...not ideal. They they had an opening that same day at 4:20...perfect! After the ENT we had the labs done and then headed back to the eye doctor. Our normal one was out of the office, but the guy we saw said his eye looked healed:)
4. Thursday we were supposed to do the hearing test, see his hematologist for a follow-up and see the helmet doctor. Since the hearing was canceled I decided I wasn't dragging him back to Peoria. We will see the helmet doctor next week in Bloomington and try to tag the blood doc onto another appointment sometime soon. I ended up working Thursday and Friday since we didn't have anything scheduled. I figure it is always good to "bank" some days when Leo is doing okay and the nurses are available. We are not sure if he was ever really sick this week. He had a few more fevers and some low oxygen saturation, but nothing too bad. We have not heard back on the labs.

Last night I took Sammie to the circus in Bloomington. She really enjoyed it. I can't even say what her favorite part was because she seemed entertained through the whole thing. Friday Grandma was out of town and Terry and Sammie did a daddy daughter day at the pool. She is a busy girl always keeping us on the go!