So I have been meaning to write quite a number of posts but I have been BUSY! A mobile 10 month old and a non-walking, trach pulling, 3 year old can do that to you. So I wills start with our latest visits and developments with Luke and then post some about June visits and things later.
Yesterday Kevin, Luke and I headed to Mott Children's Hospital in Ann Arbor. Hannah thankfully stayed with my parents and had a great time. I am so glad my mom thought of just taking her and that she is old enough for this as 8 hours in a car and a stressed out mommy due to Luke's procedure would have made for a very bad day for her. She had a great time with my parents, and they had a great time with her. She even stayed over night and only kept them up for one 2 hour block. Not a bad night for Hannah.
So why did we go? Luke needed a CT scan of his jaw before his jaw distraction surgery in August so the doctors can get the lay of the land and make sure they have all the appropriated sized tools and equipment. To do this Luke needs to be put under general anesthesia as he has to hold still for 10 minutes or so of the scan and what 3 year old, let alone my terrified of anything or anyone medical little boy. And also nervous that as he woke up he would pull out his trach and cause an incident.
He was put under once before for ear tubes and it didn't go so well so I was nervous this time. But now that I think back, he did fine, it was just how it was handled and how I reacted that did not go so well. It was going to take 10 minutes and the ENT said that things would be easier and he would not have to be admitted if we kept him off the vent for surgery. I said okay we can try it as at this time I think he was getting one nap a day off the vent. We hadn't yet realized he had alveolar hypoventilation and central sleep apnea. However, they put him on 100% oxygen and said he did fine. We were called back before he woke up to the recovery room because they didn't have the power cord to the vent and it wasn't worked they said so they wanted us to come back. Well I didn't give them the power cord because I didn't want it all over hospital floors and the vent has 45 minutes or so of batter power built in, more than enough time for the surgery and us to get to recovery. I was not able to talk to the anesthesiologist about the vent because she went back to surgery and then they said they wanted it so we went back and got it and sent it with a nurse. There was some miscommunication as to whether to leave our stuff or not and we should have brought it to pre-op holding and then I could talked to the anesthesiologist about the vent. Oh well, lesson learned. When he woke up they had him on 5-6L of oxygen!!!! and put him on the vent at like 60 or 70 breaths per minute. I was really not wanting him on that much oxygen but they would only turn it down in small increments every 15 minutes. Ahhhh, we were going to be there all day, and, as we would find out, you are only supposed to be in recovery for 2 hours at most and if you need longer you need to be admitted. As they turned his breath rate down below his waking rate he still wasn't breathing like his normal fast self and they were waiting for it. I was thinking but Keivn put it into words that he wasn't going to breath over the breath rate if he didn't have to. He was being pumped with oxygen and the machine was giving him good support so there was no reason for him too. Kevin and I worked to get the nurse to turn the settings down faster as Luke was sitting up reading books and being his normal self right away. We even would try to turn down the oxygen when they walked away. Finally, they nurse said she was going to call the anesthesiologist because we thought he was fine and we wanted to go but she was all nervous. Well when she left we started turning things down and then Luke started breathing like normal once his oxygen levels and breathe rate were down to reasonable. This happened just before the nurse came back with a different anesthesiologist than did the surgery and he listened to the nurse then to me and said “Do what the mom says, she knows best.” Thank you Mr. Anesthesiologist.
Every experience is a learning experience and now I know that he needs the vent when under and to really be firm about he settings and I am not afarid to be a lot more adamant about Luke and his breathing.
So back to the procedure from yesterday. I was prepared with the vent and with 6 trachs I think. I was prepared to fight to get Kevin in the room or at least one of us there till he was out and have us back before he woke up. As much as I love DeVoss the ear tube surgery incident just did not go well and maybe it was just a freak thing but Motts handled it awesome! No issues. I didn't even have to push for anything.
The anesthesiologist came in and asked what questions we had. I was telling all nurses and told him that Luke is a huge trach puller. They don't like to hear this and are very accommodating to not have a trach out emergency on their watch. So Luke rode on Kevin's lap on the gurney to the procedure. Kevin stayed with him till he was out. They called us back before he woke up and basket case me was like pushing nurses out of the way to get to his side and see his face when we got to his bed. He was just fine. They were going to change his trach out for a non metal Shiley (he has a Flextend Bivona Plus, the plus for extra long so it is harder to pull out) but the scanners got a good scan and no trach changes were necessary. He didn't pull his trach out once, although there was a lot of grabbing and arm holding. They had no problem calling us back early and Luke woke right up and was just slightly groggy Luke. Kevin played him “Baby Signing Time” on his iPad while we waited and I fed him and did all the post recovery things. They told us they put him on 100% oxygen while he is out just in case bad things happen as it will give him 3-5 (maybe 2-3) minutes of oxygenated so plenty of time to get a trach or airway back in. He wasn't thrilled with the IV on his wrist and the big plastic thing on his thumb to protect it. This was the thumb he like to suck but he ended up sucking his pointer finger when he couldn't get the thumb in his mouth.
My mom made him g-tube pads in the shape of starts with star fabric on them for the 4th of July and he was wearing one. It got lots of great comments from the nurses and our nurse called others over to see how cool it was. Go mom/grandma!
So after a successful CT scan we were off to consult with the dentist about getting Luke's teeth cleaned during his jaw surgery while he was knocked out and my stress level went down to base levels. Then the dentist came in...
Dr. Laura thought that they would try to clean his teeth but would start with counting them and brushing them. I thought she was nuts. My stress level skyrocketed and Kevin took the go bag with the extra trach off the cart and to a more easily accesible place. They brought out this bean bag thing to put in the chair and Luke got to lay in that. Kevin held his arms. I held his head and a little bit of his arms and the dentist and her assistant went to work.
And what do you know, they counted his teeth, brushed them, and cleaned the one that needed to be cleaned. I was shocked and amazed. I think I asked her twice to make sure that she did everything she needed. He has all the teeth he should and no cavities! Moebius people are not known for good teeth so this was a huge blessing. She did say that she wasn't saying his permanent teeth would not have issues but we could check them out in the x-rays that will be taken during the jaw surgery. We had noticed some amber spots on the tops of his back teeth and she said this is plaque that calcifies. This is good when it is on the top of the teeth as it acts as a sealant. However, if she finds this on the sides of his teeth it is not so good because it can cause cavities. They found it on the side of only one tooth and she cleaned it off. There was more of this on the right side and she was thinking he probably sleeps more on his right side and so pooling at night would cause buildup of plaque. I told her he drools more on the left and she said that would line up with what she is seeing because the drool washes things through and so the more drool on the left side keeps the plaque from building there. He doesn’t eat anything by mouth so we skipped the fluoride treatment and were on our way home.
We stopped to pick up something at a little shop downtown and decided to walk to get something to eat. Not such a great idea in the high 90s heat. We walked maybe 4 blocks total but Luke's little cheeks were all red, which is how I know he is really hot this summer. We did pick up something to eat in an air conditioned restaurant in the middle of our walk. He was loving the walk though, he was sitting right up in his chair looking at everything and was antsy when we stopped to get our food. For most of the day we were in air conditioning so he didn't do too bad.
As Luke has gotten older he doesn't like to sleep in the car. He will tell us over and over that he wants to go to sleep and we tell him to just go to sleep its okay. But I think he wants his bed. He slept one 45 minute nap in addition to being knocked out which really doesn't count from 6:45 a.m. to after 10 p.m. when he went to bed. Poor boy. He slept well though and took a decent nap today.
We are trying to sell our house and move into a more Luke and our family friendly house. We haven't had a showing in forever and our relator called yesterday afternoon to ask if we could show it this morning and of course I said yes. So I worked hard and got the house all around last night and this morning. A HUGE thank you to nurse Keri and my dad for helping this morning clean and watch kids. Now we just wait and see.
It has been a busy and non “normal” week for the kids and Hannah was pretty out of sorts today. We are leaving for the Moebius Conference on Wednesday so things aren't going to be normal for awhile but hopefully she will adapt quickly. I am excited about the upcoming conference and can't wait to meet the Moebius moms I talk to on-line and have Luke meet other Moebius people and kids. This will be our first trip with Luke overnight that he is not in the hospital so hopefully things go well. Luke needs someone watching him 24/7 and I am going to take this on. Other trach/vent moms sleep when their children do and have them in the same room or in earshot of alarms. I am going to attempt some sleep at night but I am not sure how it will go.
Please pray for our trip that nights would go better than expected and for safe travels. My parents and Kevin's parents are going as well so we will have 6 adults to 2 kids. Wee will also be seeing Kevin's brother and his fiance on Monday for some sightseeing and fun.