(it is another long one)
Saturday afternoon Luke fell asleep asleep, no tossing, no turning, he was out. We were thrilled. He slept for around 4 hours and woke up to a couple of hours of washing his body, stoma sites, post sites and then eating. He actually went back to sleep! He slept pretty good for quite a few hours before having some restless sleep. Sunday morning he woke up his normal self. It was awesome! He woke up and pointed to all the things I needed to remove, his elbow immobilizers, his pulse ox, his Ponsetti shoes. He knows what goes on the in morning and he was making sure I knew, very cute. I was so excited that I scared my mom when I cried happy tears on the phone. She thought something bad had happened and I tried quickly to control my tears and let her know all was very well.
Sunday was busy. I slept in the morning a little bummed to be leaving sitting up fun, playing with his toys and books Luke. But I did need sleep. I got back to Luke and found out that all the doctors had come to see him and he was hopefully headed to the stable vent unit that afternoon. Yeah! So we packed up and waited for the go ahead. We moved up 2 floors and thankfully still had our wonderful arboretum view and then some. When we got settled I went and got a massage from Nancy's (grandma) friend Dawn. Thank you Dawn! I am very tight and I should work on this. Wow have I come a long way from my hockey playing, dance company days in college. However, my mom found out that Luke loves to exercise so when he has his pins out we will see if he likes "New York City Ballet Workout". It is low impact and hopefully I can get loosened up. I am sure my knees would appreciate some more muscle support as well (my knees have been giving me lots of trouble).
Sunday night my parents and Hannah arrived. I was so happy to see her and she was so confused to see me at the end of a long car ride in a weird place that she didn't even smile at me. She had also just woken up from a nap. However, she was very vocal about leaving me and it was good to cuddle her. She did give Kevin (and maybe Luke sitting next to him) a big smile when we walked into Luke's room. It was really hard to have her in the room as she wanted to get down and go all over but then still be in my arms as she missed me. She was also getting over tired and so my parents took her to my Uncle's to spend the night with them. It was very hard to leave her again but I knew it was best as there was no way Kevin and I could take care of Luke and have Hannah with us in the hospital/hotel room. On Monday when I saw here she gave me a huge smile and came right to me. She was dressed in a cute strawberry outfit and oh so cute!
Luke was feeling good all day on Sunday, sitting up most of the day, reading and playing with toys. Very nice to see. Sunday night/Monday morning was also full of poo! Two blowouts that night. The poo has been bad. Antibiotics are not nice to digestive systems. Luke is taking the antibiotics to prevent infection at the pin sites and due to the internal device. We are done in two days but the poo is awful. However, he slept some that night and woke up a happy little guy, once his poo was removed and he had a fresh bed, on Monday.
The residents from oral surgery came down on Monday morning and turned the posts and thus started the actual jaw distraction and movement. It seemed too easy. We have a quite large, purple (my favorite color) screwdriver looking thing that fits over his posts and there are instructions on which way to turn and that 1 turn = 0.5 mm. We were instructed to turn 2x per day and they estimate around 20 days. We will follow up next Monday to check the progress. They also said that he could go home. What? Really? We can go home! We were ecstatic! We had planned to send Hannah home with Nancy to watch her at my parents house until we came home but now we could all be home. It was too good to be true but it was real! We got our discharge papers and prescription and after lots of packing and a few trips to the car were ready to go.
Luke got really excited to be out and was a good car rider, even sleeping some. However, he became really junky, needing lots of trach suctioning, as soon as we left the hospital. This is a lot of work and we are still working on figuring it out but are hoping he is just adjusting back to the non-hospital humid air. We had one poop blow out on the way home but fortunately the car seat was saved by the extra chuks (pads to absorb liquids that have plastic on the underside so they don't leak on things) from the hospital that we put down.
We got home and Luke all situated. My parents brought Hannah back all ready for bed and we got to rock and nurse. We don't have night nursing for Luke until Thursday night so Kevin and I are still switching back and forth. Nancy came back up with us and is helping wrangle Luke and Hannah and keeping Luke from falling on or banging his posts and keeping the posts away from Hannah's exploring hands.
We are still running on little sleep at awkward times and will be very happy to see nurse Keri on Thursday. We are still trying to figure out how to keep Luke's posts safe, give everyone enough sleep, keep Hannah happy, keep the house running and figure out how much of Nancy's help I will need.
Luke seems like his normal self, he is even letting me wash his pin sites and turn his pins sometimes without someone holding his hands to prevent him from pulling out his trach. He has learned to sign "mama" and other sights at his chin up around his nose to avoid the pins. I was a little concerned he would bother the pins with his very exuberant signing but that smart little guy figured it out. I am going to keep him contained in his high chair or with someone right next to him till the pins come out because I am so worried he will fall on them hard and do some real damage. The risk of damage is much higher than the displeasure I have at confining him. He didn't seem to mind today but it was only day1. Luke had really low muscle tone and will often fall over, lean on things and rub his face on things and I do not want him to do that with the pins sticking out. If he wasn't such low tone maybe it wouldn't be an issue but then there is Hannah. She loves to pull his hair, his trach, anything he has out of his hands and I fear that she would think the pins are cool and pull them as well. We were told pulling does not harm them (lots of force pushing would) but I don't want to test it out on Luke.
Also, Luke has been leaking around his trach at night (some of the air his vent is pushing into his lungs is moving around his trach and up through his mouth and nose instead of into his lung) and he has been breathing faster and shallower breaths. I don't like this as shallow night time breathing with low volumes recorded by the vent leads over time to Luke building up CO2 and not doing as well. The ENT is ordering a larger trach (which nurse Mike has been thinking Luke may need for awhile). I am a little bummed because Luke has been making noises over his vent again (for the first time since maybe a year old) and I was thinking that he may vocalize with his passy muir, or similar, valve now that he has more room around his trach and realized that he can do it. The ENT said the bigger trach may still allow him the room to do it but it may not as well.
Oh and I had this waking nightmare thought that I may have turned Luke's distraction pins the wrong way this evening but his awesome doctors (which allow me to e-mail them, thus a lot of their awesomeness) got back to me right away and said nothing bad will happen if I accidentally did move them backwards. Yeah for not worrying but I will be really sure I am turning with the arrow from now on.
Luke's surgery going really well
Luke bouncing back from surgery
getting to leave the hospital days earlier than we expected
having Nancy able to come stay with us
my parents watching Hannah and Hannah have a really good time
So prayers for...
a good full recovery for Luke
that the distraction goes well and works
for Hannah to readjust and get through her fear of us leaving her
for us to get sleep
for our nurses not to get sick and be able to show up for their days starting Thursday
resolving the vent leaking issue
that we keep Luke's pins safe from bumping and harm and Luke happy in the process
Thanks for all your continued prayers and support!
Luke in PICU right after surgery, before his cheeks started swelling like a chipmunk.
Luke sleeping on the car ride home with his swollen cheeks.
Kevin said that Luke looked like a Saber-toothed Chipmunk :) I love his sense of humor.