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.

I'm Dreaming Of A White....EASTER?!?

We went to Alamosa for Easter and woke up to snow on Easter morning. It snowed most of the day. In fact it snowed more than it did at Christmas. Go figure...

The Easter Bunny braved the snow and freezing cold temperatures to leave a few treats for Milo. Note the pink pig, the bunny knew just what to bring.

The Bunny had to hide the eggs in the house this year. Milo was interested for just a few minutes. He had an egg in each hand and was done :0)


We had a great Easter Weekend. Our adventure started on Thursday when we went to Colorado Springs to welcome my Grandparents (Milo's Great-Grandparents) home from Texas where they spend the winters. We met them & my aunt at the airport and went to my aunt's house where we spent the night after a nice dinner with more aunts, uncles, cousins & little cousins too. Milo played with the little girls and had lots of fun. Friday we continued on to Alamosa and arrived there just after lunch. We relaxed in the afternoon and did a bit of shopping. I finally found some jeans to fit my skinny little dude, Wranglers of course, size 1T slim with an adjustable waistband. Finally pants that stay up. Check out how cute they are!
Saturday we went to Uncle Chad & Aunt Melissa's house to dye Easter Eggs with Brett, Dylan and Owen. Milo had a blast. He ended up with one yellow hand and one green hand. His skin dyes better than the eggs! Later that afternoon we dyed eggs with Grandma too. This time he prefered to have a blue hand...
Grandma & Milo

Owen very proud of his yellow egg.

Dylan & Brett working hard.

Check out these Easter Cuties all dressed up and having fun hunting eggs...

Owen

Dylan

Brett & Milo

Piggy Tails

For some reason Milo has a fascination with pigs. Stuffed pigs, toy pigs, pictures of pigs, cartoon pigs, and pigs on TV. The only pig I’ve seen that he didn’t like was a guy from a barbeque place who was dressed in a big pig costume; he was handing out stuffed pigs at the hospital. Milo ended up with three of the barbeque pigs since he was in the hospital so long. These pigs are his prized possessions; unfortunately I think we lost one the other day, oops. In January we ventured out to the National Western Stock Show. We found the animal petting area and waited in line. Milo had no idea what we were going to do and was a bit impatient. As we passed the big huge sign notifying everyone of the possibility of e. coli I wondered if this was a good idea but I knew he would love it so doubled checked to make sure his trach cap was securely on and we continued. I bought an ice cream cone full of animal feed and we ventured into the pin. OK so the food probably wasn’t the best idea, there was one bully of a goat who jumped up on me to get it and scared Milo a bit. Once the food was gone I put Milo down and he didn’t know what to do. I guided him over to a small fenced in spot that had ducks, another of his favorite animals. He LOVED them, and then he discovered the goats but was not impressed. A sheep walked by and he tried to pick the bedding out of it’s wooly coat, my guy likes to be clean :0) He was standing right by a pig but had no idea what the animal was, it wasn’t pink like all the pigs he had seen in pictures, it was grey. I kept telling him it was a pig but he didn’t believe me. He finally noticed it’s curly little tail swinging around and tried to catch it, poor pig. I directed him to the front end of the pig and Milo squealed with delight. He sat right down on the floor where the pig was snorting in the bedding and blowing it around. Milo put his face right in the pig’s face & I’m pretty sure he ended up with pig slobber on him but he didn’t seem to care. He was so EXCITED I thought he would poke the pig’s eye out. After several minutes I had to drag him away, other kids wanted access. I tried to distract him with the huge llama that was sitting right next to him, no interest…the donkey, nope…he found another pig to accost…I decided for the animal’s sake it was time to go. We went straight to the hand sanitizer cuz e. coli isn’t something to mess around with, especially with a kid who has an open airway and a slightly depressed immune system. Unfortunately there were several people who did contract e. coli at the Stock Show.

After the animal petting adventure we wandered around and found pony rides. Milo was on his uncle’s shoulders when we walked into the area with the ponies. Again he squealed very loudly pointing at the ponies. Several people turned around to see if he was alright, then smiled with the realized how excited he was. His happy noises and his hurt/mad noises sound a lot alike. This line was even longer but I gave in. After a very long wait it was our turn. I sat Milo on a pony and he tried to get off. A guy came by, strapped him on and shortly the pony began to walk around the circle. The look on Milo’s face was priceless, he was worried and then excited all in the span of about 10 seconds. He had a great time and the experience was a success!

We adventured outside to the corrals so Milo could see some big cows up close and personal. The only animal sound he really makes is a “mmmmmm” sound that is supposed to be a cow. Of course he had his Carhart overalls on and it made for some really cute pictures.

No Joking, It’s April Fool’s Day

April 1 has come with some very important steps in Milo's world. April 1, 2007 Milo was flown to Denver for what would become a very challenging year. April 1, 2008 Milo finally came home from the hospital for good. It's now April 1, 2009 and Milo has been home for one whole year!! It has gone by so fast, he has grown so much & life has changed in innumerable ways.

This afternoon we took some treats to the hospital to celebrate this "Milostone". Everyone was amazed that it has already been a year and we all reflected on his time in the hospital and how much he has changed in the past year. We saw one of the physical therapists who visited Milo once in a while and she was amazed that he was unattached so he proceeded to show off and run down the hallway. One of the nurses on the floor was a nursing assistant in the PICU when he first was admitted (2 years ago today) and she reminded me how tiny he was and how medically fragile he was. Poor Susie freely admitted that he terrified. Look at him today and you would never guess :0) In January The Children's Hospital opened up a new Pulmonary Unit on the 9^th floor. This is where all of the trach/vent kids go now and most all of Milo's regular nurses moved up to this floor as well. Today one the nurses gave Milo a new t-shirt that features the Pulmonary Unit.

It is so funny how much Milo feels at home in the hospital. I am so glad he doesn't have a fear of doctors or hospitals, lots of complicated kids like him are terrified of all medically related things. The Child Life person came by, she had toys in her hands and he weaseled them out of her. It didn't take much really, just a smile and some cute noises. She had an Elmo toy and a barn, of course the barn won out because it came equipped with a pig. His little delighted noise made every one laugh when he finally got his hands on the pig.

Here are a few of the changes that have occurred over the last year. Then being April 1, 2008 and Now being April 1, 2009.

Then: 16 pounds 12 ounces

Now: 21 pounds 2 ounces

Then: 28 inches

Now: 32.75 inches

Then: Not much hair

Now: Oodles of curls

Then: Crawling

Now: Walking, running, climbing like a monkey

Then: Ventilator dependant 24/7

Now: Breathes all by himself

Then: Oxygen dependant 24/7

Now: Oxygen only while sleeping

Then: Hooked to lots of tubes and cords 24/7

Now: Only at night and only a few

Then: Took us at least 30 minutes to get out the door

Now: Takes less than 3 minutes

Then: Trach tie had to be changed every day or his skin would break down

Now: Can go a week without a change

Then: Horrible eczema

Now: Under control

Then: Communicated with a few noises

Now: Communicates with lots of sign language, noises and a few word approximations

Then: Tolerated his carseat for 10 minutes maximum

Now: Likes to ride in the car and look out the windows

I'm sure there are many more changes that I just can't think of right now :0)

Enjoy the slide show of Milo's First Year On The Outside (it may take awhile to load)

Make video montages at www.OneTrueMedia.com

Sporting A New Look

Milo's Broviac (his central line or semi-permanent IV in his chest) came on on Tuesday night. It just fell out. Very strange. He was playing on the floor with a car and I looked down to find his broviac laying on the floor, Milo saw it at the same time and picked it up. I jumped up and grabbed Milo throwing his shirt up to see what was going on, I think Milo was pretty confused. No blood, that was good, I guessed but did that mean that part of it was still in there? So off the ER we went to get a chest X-ray to make sure it was all out. Luckily this was the fastest ER trip ever only 1 hour, sure beats the 8 hours were there on Dec 31 to have the broviac repaired because it had a hole in it. It was all out and since we really don't use it it wasn't such a big deal. We had planned on having it taken out in a few months anyway. Now is chest is free of tubes and he can run around with out a shirt on. 1 tube down only 2 to go, trach & g-tube. As for the trach things are coming along quite well. At his last pulmonology appointment a few weeks ago the doctor said she plans on taking his trach out the end of March or beginning of April. YIKES! Don't get me wrong I'd love to be free of the thing but it's scary at the same time. Right now he has a airway that's safe take that away and we have to hope for the best. We are allowed to cap him (that pink thing in other pictures) to force him to breathe through his nose & mouth. Right now our order are for up to 6 hours a day but he just isn't tolerating that. He won't leave the thing on and if he does he gets pretty crabby & clingy. His oxygen levels seem to be fine so I'm not sure what his problem is. It could be a sensory thing, when he got his trach it took several weeks and coding 4 times to be able to breathe without sedation. At least he isn't being that dramatic this time around! And the G-Tube, well that will be with him for the foreseeable future. He has no interest in eating orally. He gags if anything gets to the back of his tongue, he has to learn to swallow instead of gag, it's not pretty. We are working on it but I think it will be a long process. His belly seems better for the most part. He has his gagging spells about once a month that get so bad he sleeps after eating because he is exhausted from retching. Pedialite for a day seems to fix the problem. The doctor feels it is because his stomach muscles are slow and don't empty his stomach very fast especially if he is under any kind of stress. He prescribed a medication that would hopefully help the problem but when I went to fill it the pharmacist said it is no longer being made. Back to square one.

I think that's about it for the medical update. Milo is a crazy 2 year old who has come into the terrible 2's with a vengeance, tantrums and all. Most of the time he is a joy to be around though. We've had some fun outings and I hope to post pictures and stories soon so check back if you haven't seen them yet!