Wednesday, June 30, 2010

Milo's Summer Theme Song

All is right with world as long as Milo can play outside! I saw this on Sesame Street this spring and found it quite fitting for my little nature boy. I can't help but smile when I hear this song. The days he can't play outside are very long and difficult for both of us. He has been enjoying water play in the sprinkler, the water table & his kiddie pool as well as digging in the dirt. He drives his tricycle around, he can almost reach the pedals :0) He likes being outside by himself too. Yesterday he made it clear that I was not invited outside with him so I took to peaking out doors and windows to make sure all was alright.

Saturday, June 26, 2010

The Nitty Gritty

I know it has been way too long since I've updated the blog...I was reminded that there are still snow pictures and it is now officially summer. Well, there's lots to say, so much in fact that I don't know where to start. Most of the time I just give up after staring at the computer screen for awhile but today I'm going to take a stab at getting something written. At least part of it anyway, the medical part, which is probably the most boring but has the biggest impact on daily life. Deep breath, here we go!

Airway

When I last left off Milo was scheduled for a bronchoscopy in early April. That bronch got moved up to March 17th and I was given about 15 hours notice. It was a whirlwind of a night and definately gave me less time to stress over it. This bronch showed severe narrowing of his trachea near the bottom where there is scar tissue from his very first surgery when he was a week old. Here's the picture the surgeon gave me, the black spot is the opening and it should be much bigger, the white above it is the offending scar tissue. You can also see that his trachea is more a tear shape than round like a "normal" trachea.
Dr. K was able to use a balloon to open up the area. It was very stubborn and took inflating the balloon 7 times to get any results at all. Inflating a balloon will stretch the scar tissue and cause little tears which should then firm up and hold the trachea open. Here's what it looked like after the balloon dilation, it's a little red and irritated but the opening is much bigger now:
This scar tissue has been there for basically his whole life and it had been stable for over 2 years and now it is causing issues again. This part of his trachea is well below where a standard tracheostomy tube can reach and so far no talk of re-traching. Pulmonology also joined in and took a look deeper into his lungs and got a sample of secretions to culture to make sure there was no deep infection brewing, and there wasn't. Milo didn't appreciate this part so he was admitted overnight for observation. Here he is finally resting in his room.

In April he went back again for another bronch to check on that scar tissue and not suprisingly it had grown back. This time Dr. K used a laser to remove the tissue and put in some medication that is supposed to keep scar tissue from forming. Here he is waiting in pre-op playing with his toys. It really is hard to keep him enteratined in that room.
He was admitted to the hospital and ended up staying for 4 days. He needed oxygen longer than normal after surgery and sounded horrible. He was rattely, like he needed to cough secretions up but he just wouldn't cough very much. His pulmonologist, Dr. D was the attending that week so get got a little more attention than normal to fine tune his treatments and try to keep his airways clearer.
He came home with a CPT vest that shakes all the junk loose from his lungs and airway so it is hopefully easier to cough out. It does help some but not as much as we had hoped. Here's a video of him in the hospital.
video

By the 4th morning Milo was ready to go. He found a pretty blue button with the word "code" on it and pushed it, everyone came running. He was amused :0) they discharged him shortly after that. In May he went back for another bronch which showed the scar tissue had grown back somewhat despite the drug used last time. Milo was treated to more laser but this time he was able to come home that day. He continues to sound like he needs to cough most of the time. His normal secretions get stuck on that scar tissue and he has a hard time getting them up. He is scheduled for another bronch mid-July, we'll see what's going on then.

Heart

Last Monday Milo had his annual heart catheterization. I'll have to say this procedure is one I dread, almost more because of the recovery than the procedure. He has to lay flat on his back for 4 hour afterward. Ever since he was tiny he knew everything was alright as long as he could sit up after a procedure, an IV stick, surgery, trach change, etc. We wrestled him for about 1.5 hours before I nearly demanded they find a drug that would work to chill him out. They had already tried the normal versed, valium and dalaudid which worked for about 10 min each. Finally they gave him a combination of dalaudid and benedryl which worked and he finally rested for most of the rest of his 4 hours. At the 4 hour mark he popped straight up on the bed from a half awake state and there was no holding him down after that. The results were a mix of good and not so good. He still has narrowing in both of his pulmonary arteries (they take the blood from the heart to the lungs to get oxygenated) and they did not respond to the balloon dilation (I sence a theme here). The good thing is that his heart is not really suffering from it. The pressures are higher than they should be but not danerously high so we have time. Ideally they would like to put in stents to hold those arteries open and he is big enough for that now. The only problem is that when they tried to dilate the right artery his breathing was affected. The theory is that the artery then pressed on his airway (bronchus) in his right lung and collapsed it. The doctor recommended that Milo have a CT scan to figure out his unique anatomy and then a plan can be made. He said that should be done in the next 6-12 months so while it is important this be fixed, we do have time on our side.

Bones

Yup bones, this is new territory for us. In December Milo saw a genetic doctor to try to figure out if he has a "syndrome". I have mixed feelings about this but that's a subject for a post all on it's own :0) I took him to this appointment confident they would find nothing and boy was I wrong. Turns out he has funky bones, like the technical term? Seriously he has a form of skeletal dysplasia also know as dwarfism. Now if he follows his current growth pattern he will be around 5 feet 4 inches as an adult so I hardly consider that dwarfism. It was also noted that he has osteoporosis so he is now on rather large doses of vitamin D so his body can use the calcium it is getting. Milo has been refered to the new Skeletal Dysplasia clinic at Children's Hospital but they only see 4 patients a month so I suspect it will be several months before he is seen. This clinic is comprised of several specialists (probably all the remaining ones Milo hasn't seen before) that try to put everything together to come up with a more specific diagnosis and medical treatment plan. If they can't come up with a diagnosis they will send his information on to another doctor (in California I think) who is apparently the guru of skeletal dysplasias. I still think he is a uniquie kiddo and doesn't have a "syndrome" or maybe it's a new one they will name after him :0)

The Belly

I am proud to say that Milo's stomach really hasn't been an issue for a while now (knock on wood). He had the stomach flu in February and some mysterious something 2 weeks ago but other than that he's been doing well. He continues ot take his daily reflux medication and I'm not messing with that! We still avaoid certain foods that we know or suspect he may be allergic to. He is starting to eat by mouth now (that's a story for another post) and all those allergy foods are hard to avoid.

Skin

Eczema may very well be the most annoying ailment we deal with on a daily basis. He is itchy a lot of the time. When it got hot his skin flared up pretty bad but we quickly got it under control. The oral steroids he is taking for his airway also help the eczema. His arms look 1000% better than last year and his legs are clearing up as well. The red patches on his cheeks are gone most of the time but if they do appear they are less noticable. Recently I took him off his daily dose of zyrtec and he has had no increase in itching. He still gets an antihistamine at night but I am trying to wean him off that as well because I don't think it helps either. He still does need to be moisturized twice a day and every now and then we have to use a steroid ointment but over all it's not as bad as it could be.

Well this has been a very long post, thanks for hanging in there with me. I do have lots more to tell ya and hopefully I'll get to it soon!