I Spoke Too Soon...

I should have known better. After announcing to the world that Milo's stomach problems seem to have resolved--they are back. He feels horrible, it's been over a week now. Retching, gagging, drooling, laying on the floor. That's not my kiddo, he's normally running, climbing, playing with toys and being a wild kid. We tried 24 hours of Pedialyte which normally "fixes" him but it didn't work. I called his GI doctor but haven't heard back. He had an upper GI study last week to see if he was refluxing and he wasn't but the radiologist did say his stomach was emptying slow, in fact we had to stay an extra 15 minutes to make sure the barium was emptying out of his stomach and it was. I'm suprised the GI doctor hadn't called with results, well kind of. It was good to have the study done while he was feeling bad, I think it might have been a better view of what is going on, maybe. Oh yeah, I learned that his mini g-button is NOT compatable with the Mic-key extensions like the website says. I forgot ours so we tried a Mic-key because it was supposed to be compatable but it wouldn't work so the radiologist rigged a feeding extension, he was so nice to do that :0) We've tried smaller volumes, thicker food, thinner food, giving it faster, giving it slower, nothing seems to be helping. I'm guessing that the GI doc will prescibe Reglan and hopefully that will help although last time we tried it, it didn't work but I'm up for trying anything at this point! Ugh...

Leaps & Bounds

I can't believe how much this kid is learning and absorbing all the sudden. He's like a little sponge right now. Developmentally he's soaring!

Speech Therapy: He learns new signs every day and although he "personalizes" them they are usually pretty close to the "correct" form. This week he has started to sign outside, turtle, movie, eyeglasses and probably a few more I can't think of right now. I think he knows upwards of 45 signs at this point! He babbles in sign language, it is very cute but has to be frustrating when I don't understand what he is trying to tell me. He is answering questions with sign language too. This evening I asked him where he trach cap was and he signed "train" so I found his little train in the living room window sill and sure enough it was hooked on the caboose. It is so nice to communicate with him better. Even more exciting, he is trying to say words and letter sounds. Last weekend he brought me a ziploc bag that had some toys in it and pointed to his mouth and said "open", it was far from perfect but I sure figured out what he meant. His speech therapist always points to her mouth to get him to pay attention to what her lips are doing when she speaks so it was so cute to see him point when he was trying to talk. Now I know when he is trying to say a word rather than just babble because he points to his mouth.

Physical Therapy: He is doing so well that PT has been scaled back to only twice a month. He walks on uneven terrain and keeps his balance, runs, climbs and is jumping a little bit too. His main issue is with the way he sits. He "W" sits, as best I can describe it it would be like sitting on your knees then letting your feet move to either side of your bum and sit on the floor.

Milo (and Owen) demonstrating the w-sit

Looks terribly uncomfortable. He learned to do this early on and it's a hard habit to break. Initially it was easier for him to keep his balance and he was more stable sitting this way. There are two camps regarding w-sitting. One is to try to correct him every time we see it and get him to break the habit, this is what his physical therapists have always done. We saw a physical rehab doctor last year and he said not to worry about he will correct himself in time before any damage is done. It does stretch out the knees and his hamstrings are very tight. Personally I'm taking the middle ground, there is no way I can correct him every time he does this, I would have to hoover over him 24/7 but I do correct him as often as I can and we are working on stretching out those hamstrings so sitting "criss-cross" won't be so uncomfortable for him. He hates stretching, who can blame him. Oh yeah, on the climbing front, Milo has learned how to climb out of his crib. Yesterday he was supposed to be taking a nap and I found him with his knee on the top rail and he was holding onto his oxygen tank for leverage. Yikes! Good thing we have a video monitor to keep tabs on the little monkey. Looks like the toddler bed might be in our near future.

Sensory Issues: He's getting better, a couple of weekends ago he hauled a poor worm around until it expired. Poor worm, he sacrificed his life for Milo therapy. We were all surprised that he would touch a slimy wiggly thing like that. He was so cute, he'd put it on the sidewalk and push it along if it wasn't moving fast enough for him. He also got good at making mud pies although they were pretty runny. He still doesn't like slimy things that stick to his hands though, we're working on it.

Milo's Worm

Making Mud Pies, note the dirt on his face :0)

Feeding: Still not eating anything by mouth :0( He does like to play in my food though and loves to feed me, his stuffed animals and his toys. I'm not too worried about this though, after his trach comes out we'll tackle this. On a very positive note, his g-tube feeds are going much better. Almost all of the retching has disappeared. I asked his GI doctor if we could try Previcid for reflux and it did the trick. I had to play around and find the right time of the day to give it to make sure he didn't retch after any of his feedings. Typically his breakfast gave him the most problems and it turns out giving it to him before bed is what works best for him. I feel bad it took so long to find out what the problem was, we tried Zantac last fall and that didn't work so we figured it wasn't reflux. Previcid just works differently although it does the same thing and looks like it works better for Milo. I just hope it keeps working because the last week has been wonderful.

Respiratory: After only a few days Milo learned to tolerate doing his nebulizer treatments though a face mask rather than his trach. The first time I tried it he was confused and kept pushing it down to his trach and looking at me like I was crazy. The mask is cute, it is a dinosaur face :0) He sits very nicely now and will put the mask to his face by himself, we are working on the elastic band so we don't have to hold it but that's just icing on the cake. Next week we'll tackle the nasal cannula, I don't think that one will go as smoothly though :0)


He has been taking his cap off as usual but yesterday he pulled his trach out with it. His nurse had just said it was time to change his trach (he gets a clean one every 2 weeks) and went in the next room to get the supplies when he yanked it out. So with his trach on the outside of his neck I chased him to his nurse then took him into his room where we typically change his trach. She attached a trach tie to the new trach and I took the old one off. I was weird to see his neck for more than 2 seconds. She slid the new trach in with no problems although he didn't like it so much. The reassuring thing is that he had no color change, so problem breathing and even crying when he saw the new trach he did just fine. I think it's time to get the thing out, I'm still a bit nervous but I'm getting better after seeing him without it for a few minutes. By the way, this is not the recommend way of changing a trach. Ideally it's only out for 1-2 seconds :0)

THE DATE!!

We finally have the date for Milo's decannulation (trach removal)! Hopefully on JULY 23 Milo will have a naked neck :0) The plan is for him to be admitted the evening of the 22nd and be observed capped while sleeping, on the 23rd he will have yet another bronch and if all looks good his trach will come out. He will stay at least 24 hours after decannulation to make sure everything is alright. I'm keeping my fingers crossed that this will all work out and he does well without the trach. I'm getting more comfortable with the idea, I'm about 85% sure he will be fine. I won't say 100% because I learned a long time ago in this journey there are no 100 percents. I think Milo is about ready for it too. Today he pulled his trach out twice while trying to remove the cap. Once we were in the lobby of the hospital waiting for his prescriptions to be filled and the other was in our backyard. Neither time did he struggle to breathe, turn colors or seem like he cared in the least. I will admit that the 2nd time his trach came out we weren't vey fast at getting it back in. I wanted to see what he would do, and he passed with flying colors. It reminded me of when he would pull himself off the vent and we took our time hooking him back up. I've decided that removing the cap is just a control issue for him, it's something that he can control in his life. If he gets mad he pulls it off and throws it just as far as he can. He also likes to play with it :0)

Now I have to get him to wear a nasal cannula for his oxygen while sleeping and do his nebulizer treatments though is nose and mouth rather than his trach. These are 2 big steps for him. In fact the doctors offered to remove his trach mid June but I just didn't think we could accomplish these 2 things by then. The other day I tried his nebulizer with the face mask and he kept pushng it down to his trach and looking at me like I was crazy and didn't know what I was doing. Ugh, the nasal cannula will be much harder though. Little prongs going up his nose and blowing air is not something he enjoys. We've been using a neonatal cannula since his nose is so small and I've cut the prongs off but he wants nothing to do with the thing. Wish us luck!!

Summer's Here!

Wow, it's been hot here the last few days! Milo has been enjoying playing outside in the water. He loves to play in his water table pouring water from one cup to another, he can entertain himself for hours if ya let him. Of course he gets soaking wet in the process so when his lips turn blue we know it's time for a break to warm up :0) Milo also doesn't mind walking through the sprinkler. The other day we were in the front yard watering flowers and Milo started to run off so I sprayed the hose across the sidewalk assuming he would stop rather than get wet but he kept on running and giggling. The next day I turned on a sprinkler in the back yard and he would walk right though it. His water table was right on the edge of the water and stood there playing even with the water sprinkling in his face.

Milo has been tolerating the cap on his trach much better these days. He is allowed to have it on "all waking hours" and for the most part he leaves it on all day. He knows he isn't supposed to take it off so he will spin it around every now and then. Today he took it off and put it back on a couple of times. He is ornery though and will take it off and throw it just as hard as he can for no apparent reason at all, we have lost quite a few caps this way. He also grabs it off when he is upset and crying. I don't think he "needs" it off when crying it just a habit at this point. Sometimes when we can't find the cap we will ask him where it is and he will go get it, especially if he gets to go outside when it's back on. I've also caught him pulling it off and playing with it, putting in a dump truck or tractor. I guess it's a toy that's always with him...

We still don't have a date for decannulation (trach removal) yet. I have a call into the doctors to remind them so hopefully we will hear something very soon!

See Ya Later Ventilator!

Today we had a going away party for the ventilator :0)

I gathered up all the bits & pieces that go along with it for the respiratory therapist to come pick up. Slowly we are reclaiming our house from all the medical equipment..

When I was disassembling the circuit from the ventilator and heater Milo had to check it out, he tried to put it back together, it was too cute...

I made the vent a going away sign and we blew party blowers (quietly of course because loud noises still scare Milo) to mark this historic event.

Milo waved bye-bye to the ventilator just before it took it's last roll out of the house. At 2:30pm on Wednesday May 6th 2009 the ventilator left our house for destinations unknown. I'm sure it will be put to good use though.

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...

Another Milostone

In the past when Milo was sick he wasn't just a little sick he was dramatic about the whole thing. He didn't get a cold, he got pneumonia. He didn't get a little infection he got a blood infection. He didn't get a little scar tissue, he got enough to almost close off his airway. He didn't get strep throat, he got antibiotic resistant bacteria growing in his trachea. He doesn't have seasonal allergies, he has major food allergies. The nurses (and probably a few doctors) in the PICU called him the Drama King and were on the hunt for his crown.

This week Milo got his first normal, run-of-the-mill childhood illness--a double ear infection. The doctor asked if he was allergic to amoxacillin. I told her he had never had the "little" antibiotics before, he always went for the ones reserved to fight big nasty infections that could be life threatening and usually got them in combinations of 3 at the same time. She laughed and said to watch for hives and call if he got them. Well, so far so good. No rash, much lower temperature (although not normal yet) and back to his old self. He felt so bad yesterday he fell asleep on the floor of the exam room at the doctor's office, poor guy.