So here's how it went:
Pedatric Seurgeos - stop 1
Luke has some nanstly looking granulation tisse around his g-tube site that just won't go away. The doc decided to try to cut some off and cautarize it with silver nitrate. They don't have nerve endings so this doesn't hurt. It is just hard to hold him down espeically when he doesn't like people looking at him and touching him when he thinks it is going to hurt. He did so well though that the doc cleaned the whole site up and it looks great! Onward....
So now I have to go through this building and two hospitals and into another office building (without going outside which is very nice in the winter). However, since we didn't come in time to park at the other building where we would be spending the next 3+ hours I was walking the kids and Kevin was moving the car. I don't like to be far away from the car in case we need extra, clothes, diapers, oxygen... So I had Hannah in the Boba carrier on my front, a large tool bag stuffed with kids thing over my shoulder and I was pushing the double stroller with Luke in the front and the vent sitting in the 2nd seat with the suction hanging off the back and the oxygen, pulse ox and my purse shoved in the bottom. I am sure we were a site to see. But we made it with no incident and got to our next appointment at orthopedics....
Orthodicts - stop 2
When we were at neruodevelopment last they wanted to make sure someone looked at his hips since he wasn't walking yet to make sure they were okay. Our PT said he just needed to gain more strength in his hips. Since we were at ortho we asked the doc and she got his hips x-rayed and showed us that everything was doing well and since he has neuromuscular issues that it is probably just that and he needs some more time. She did prescribe AFOs which are braces to help him with stability in his ankles. When his ankles are more stable he will be able to work on getting his muscles strength and balancing in his upper legs, hips and core in order to stand better and walk.
Luke's clubbed feet are being corrected by the Ponsetti method and doing well. His left one is still way worse than the right. The right is I think about normal now. They left one has just the amount of range of motion that they want to see. Ponsetti (or his group because he has passed away) has changed their recommendations to keep the braces on at night until he is 4 years old and not just 3 years. Also, our doctor is changing practices and so we will get another doctor next time we go. Fortunately the new doctor does almost exclusively clubbed feet. Just the doctor for us.
I must say the new offices are great. They have couches!!!! and more room for our moving NICU to get in. We were comfortable and there we weren't moving the stroller around every time someone needed to move to a new place in the room.
Blood work - attempt #1
Kevin and I were not too hungry and so we decided to get the bloodwork done before his 1:00 p.m. appointment. Well I guess a lot of people thought this because we were there for 45 minutes and finally next in line and it was time to go to pulmonology. Pulmonology will not wait and since we were first after lunch were ready for us. Fortunalty the lab said they would put us back to the top of the cue when we came back.
Oh and during this time I had to feed Hannah. Looking around the room there were two empty seats and they had people leaning over the shared arm rests from other seats. Not a good place to nurse. So I decided to go to the pulmonlogy waiting room which is huge and was fairly empty. When I walked in and told the room coordination why I was there she offered me an empty office. Bonus! Hannah is VERY easily distracted while nursing and thus far had not nursed well in the car when we stopped to feed or change Luke because she was too busy watching Luke and Kevin. So I was happy for a quite, distraction free place to nurse.
Pulmonary - Stop 3
We had a good visit to pulmonlogy. We got a blood pressure for Luke for the first time in over a year I think. Luke HATES to have his blood pressure taken. He sees the machine and goes nuts. This kid is strong. He is flails so much the machine does not read and if it does get a reading he is usually so worked up that it is not accurate. He was sitting on my lap facing me which I thought was good. The nurse was going to annouce what she was doing and I shhed her and said to just slip it on. Kevin was great and brought Hannah over and we had Luke point out the ducks on Hannah's feet and her nose and all sorts of things. He made a little fuss when it squeezed but mainly we were good to go. Luke is growing well and now down on the 40% for weight and around the 11% for height which puts his height to weight ratio at a much better place, maybe around the 50%, I didn't look real close. But he used to be 98% or more. Yikes!
We are just keeping doing what we are doing lung wise for Luke. We will need to see a cardiologist to clear him for jaw surgery this summer and if his heart looks good we can think about weaning some of his oxygen at night. Right now he sits at 98-100% almost all night on the 0.3L of oxygen he is on. The doc is hesitant right now because they saw a dip to 86% oxygen which is not good and she said there are studies that show dips in oxygen being very hard on the heart. So I understood that and we will have to see.
Blood work - attempt #2 Stop 4
So after pulmonlogy we got right into the lab for blood work. Luke is a super hard poke and he really hadn't had a nap and it was after 2 p.m. and after all the visits I saw that this could not be good. Hannah was asleep in the carrier at this point and stayed asleep through the whole thing. Me moving around, leaning down, singing, all of it. We have found that Luke's feet are the best place to get blood from him but they always have to check arms first. Kevin was holding Luke his lab and another lady and I were working on holding him still. The lady who was taking blood we have seen before. She found what for Luke is a good vein in his right arm and as she was going in he jerked and we lost it. She dug around in that arm and tried the other and then went for the foot. She said next time she will only have to try one arm. Luke is super upset. I am trying to sing "Wheels on the Bus" the only acceptable song and the song that must be sung when something is going on that Luke does not like. He requests it if he knows something is coming. But we got it done. Allergy testing, CBC and blood gas. I forgot to call yesterday with the results and so I will have to do that today.
AFO fitting - Stop 5
Since we don't go down much and I didn't want an extra trip I squeezed our AFO fitting at 4 p.m. Luke was soooo not happy about it but the therapist doing the molds was great and fast. We will have to go back in a few weeks to pick them up and make sure they fit correctly.
The car ride home was pretty uneventful. Luke did not sleep, although he must have been exhausted, but he just sat and nicely looked out the window and was just a wonderful car rider. Hannah on the other had started to loose it. Her bedtime is around 7:30 p.m. and we were past that and she hadn't had any really good naps so she was really fussy. She was so tired and just wanted to sleep in her bed I think. Poor girl. She was also awake for most of the car ride back. Normally she is a good car sleeper but I think she was just too overtired to sleep.
We are recovering and Luke just played and played yesterday, I had a lot to do and a major poop incident from Hannah and so didn't have much time to play with him (and the time I did sit down to play he wanted to watch Signing Time). He was just fine playing by himself. I think he just wanted some time away from people after all the doctor visits.
So there you have it. A very long day but I getting a lot done.