A Treacherous Path

Spring has sprung and along with the flowers & spring snow storms has come several medical procedures for Milo. I'm calling it his preventative maintenance :0) In March he had an ECHO (ultrasound of his heart) to check on his co-arc repair and to try to get a look at his pulmonary arteries that were so very small at birth. His pulmonary arteries were what I was most curious about. When he was born he had a Left Pulmonary Artery Sling that caused his trachea to be very small and both the left & right pulmonary arteries to be VERY small and the doctors HOPED they would grow at all and hopefully fast enough to catch up to the proper size. No one has looked at his pulmonary arteries very closely since then. Turns out because of the trach his pulmonary arteries can not be seen with an ECHO. I talked to a cardiologist and it was decided that he should have a heart cath to get a real good look at them and if necessary they could try to stretch them out with a balloon or if they were still very tiny a stent. On the positive side his co-arc repair was great, they never would have known he had one. A few weeks later Milo was scheduled for a heart cath, he had one when he was a month old but not since then. He was originally scheduled at 8am on a Friday but didn't end up having the procedure until 4:30, never again will I let it happen that late on a Friday. At the same time he had a bronchoscopy to check on his airway & make sure things look good. Of course his normal ENT couldn't be there for the bronch so she sent a new Fellow to do it but explained to him what Milo's airway looks like (cuz it's very far from normal) and the Fellow assured me he understood. The bronch was done first and out came the poor Fellow, he was a few shade whiter than when he went in. He said there's lots of scar tissue and he would need that removed as soon as the regular ENT could. I sat him down and showed him pictures of Milo's last bronch and I could see the guy physically relax. I just know he couldn't figure out how Milo was breathing at all after looking at his airway. He said "Oh yeah, that's exactly what it looks like now." OK problem solved, Milo's airway looks great, for Milo at least. Milo has broken in another new Fellow! On to the heart cath, it seemed to take forever and several hours later the cardiologist came out to talk. He brought pictures with him to explain what he saw. He got to the pictures with this Pulmonary arteries and explained that both of them had small areas of narrowing but that they didn't seem to be causing any problems. They did try to balloon them open a bit. The left one did alright with this procedure but it didn't seem to help a whole lot. Totally different story with the right one, as soon as they started to inflate the balloon Milo's heart & respiratory rate fell, his blood pressure in his lungs sky rocketed, NOT GOOD at all. Luckily as soon as they removed the balloon he returned to normal, phew. I asked about his left artery and if it was kinked since it didn't form in the correct place, when he was tiny I was told that he might have to have a stent if it got kinked. He said it was not kinked but took a "treacherous path" of turns to get to the left lung, it looked good. A treacherous path, how fitting for Milo, I think that sums up all of Milo's medical adventures! He stayed one night on the cardiac floor and we were out the door the next morning. With all this behind us the question became, When is the trach coming out? Today we got closer to that answer. Last week we saw the ENT who felt it could come out in June/July as long as his trach was capped all day and he doing well. Today we saw the pulmonologist who wants to get a date nailed down and "get that thing out". The doctors will get together and come up with a date that both of them will be around to the big event. He will probably have to be admitted a day before so they can watch him and cap him during sleep, after the trach is out he will stay for at least 24 hours maybe longer. I know this is a good thing but to be honest, I'm scared. Last time he tried breathing without the trach he wasn't very successful at all. I know he'll be better at it now, but will it be good enough? I think I'm attached to the trach...
Good news, the ventilator gets to leave the house, it has been gathering dust for the last 6 months, I think we will throw it a going away party. I'm defiantly not attached to the vent...

Eating, or rather putting food into his belly, continues to be a challenge. Luckily he is growing though, he has gained about 5 pounds and grew 4.5 inches in the last year. He has good days every now and then but most are not so good days. He retches & gags, his belly hurts, he drools, his heart rate goes up and lays on the floor. He was constipated for awhile, thought that might have been the problem but nope. He had a barium enema to make sure his anatomy was normal, it was. That was a messy procedure though. Not sure where to go from here but hopefully the GI doc will have another guess, another thing to try...I feel like we are living a bad episode of Mystery Diagnosis where the person lives with problems for 10-15 years before figuring out what is wrong.

I think that's about it for the medical update...