10 DAYS AND COUNTING

A year ago today Milo had surgery to receive his tracheotomy, it hardly seems like it was a whole year ago. Today Milo has been home for the hospital a record 10 days in a row. He is doing really well, soaking in his surroundings and exploring more and more each day. Last year I could never have imagined how the year would unfold. My expectation was that he would have surgery and in a week we would be on our way home to Colorado Springs. The doctors thought that just the tracheotomy would be enough to help him breathe easier, they really didn't think he would need to be on a ventilator long term. Fast forward a year and Milo is finally home and is still on the vent. Just goes to show you that medicine is more of an art than a definite science.

MILOSTONE--Milo stood up all by himself in the middle of the room today. He was squatting (which he has been doing for several days now) and just stood himself up. He looked very pleased with himself then fell down. My cousin Curtis and his wife Candace were here for a visit at the time and we all cheered for him. I expect that we will be seeing a lot more of this in the days to come. He has been letting go of things and standing independently for a couple of seconds here and there. He will also walk while holding hands, sometimes with only one had. I am so excited for him to learn this skill like all the kids his age but on the other hand chasing him with the ventilator will be that much more of a challenge!!

Milo has 3 doctor appointments on Tuesday afternoon so we will be spending a bit of time at The Children's Hospital but this time in the outpatient clinic area. Of course we will be stopping by the 8th floor to say hi because we both miss you guys so much. His appointments are Special Care clinic at 1:40, Pulmonology at 3:00 and Allergy at 4:00 and we will be by after that. If his isn't too crabby maybe we will be able to stop by the PICU as well.

Eating has become much more enjoyable for Milo. He is eating like a champ, at least 7 ounces of baby food 3 times a day. In fact he ate so much in addition to all the formula he always gets that he was miserable the other day. I have cut him back a bit with the baby food until we can talk to his doctors about how to balance food and formula so he won't feel like he ate Thanksgiving Dinner every day! It's not a lot of fun to see sweet potatoes squishing back out around a g-tube and it has to feel horrible...

Well I'd better go for now and get some rest before the race begins again in the morning :0)

THE LONG AWATED UPDATE

Sorry it has taken me so long to update, it has been a busy crazy couple of weeks! First of all—MILO IS HOME!!! Now let me go back and start a little more than 2 weeks ago and fill you in on the craziness that has become our lives. Friday March 21 the nurses held a “Going Home” party for Milo. He was completely spoiled and got more toys to entertain himself with. There was cake and drinks but allergy boy couldn’t play with any of that. It was such a nice gesture from the nurses and other trach-vent families. They will miss us but we will miss them just as much! Easter Sunday Milo had a visit from Dr. Joy Browne who did a neurodevelopmental assessment with him. We don’t have the results back yet but I can tell that he has learned SO much since his last assessment in December. On Monday March 24 two of Milo’s home care nurses came to meet him and learn a little about what they would be getting themselves into. By the end of our time together they both decided that they would love to help take care of Milo and this step, in my mind at least, was the final step to getting Milo out of the hospital. On Tuesday I was able to take Milo to Build-A-Bear in the Cherry Creek Mall with the help of Cloy, Milo’s rehab respiratory therapist (he rocks)! Milo did great in the car, he loved all the bumps in the road, he giggled and laughed with Cloy all the way to the mall. Walking though the mall was no big deal and the glass elevator was a hit even though it didn’t go nearly as fast as the one in the hospital. Build-A-Bear was a big hit. It is bright and colorful and so much going on. We picked out a monkey to customize for Milo. I brought an extra trach, g-tube, and broviac so the monkey could look just like Milo. The people there were wonderful, a nice lady named Michelle took all the pieces and preformed surgery on the monkey before stuffing it. The stuffing part did traumatize Milo, the noise of the machine put him straight over the edge. Poor little guy it took quite a while to calm him down but the good news it that he didn’t require extra oxygen to get over the event. For a time afterward he really didn’t want to have anything to do with his monkey but he is quite enamored by it now. Cloy decided that the monkey’s name was to be Olim and so it is. Milo & Olim are quite a pair. Olim was quite a hit with all the doctors, nurses & therapists at the hospital too. The beginning of this week Milo’s home vent came in and he was transferred to that one with no problem. It is almost the same one that the hospital uses, the oxygen just goes in a little differently. On Thursday March 27 I traveled to Colorado Springs one last time to work. I didn’t technically quit my job at Memorial Hospital, it just downsized from part time to Per Diem, meaning that if they need me and I am available I can work. I don’t expect to do that much or for quite a while but we will see what happens. This weekend was a blur of moving things out of him room and getting ready to go home. On Saturday the hospital lost power several times but luckily his ventilator has an internal back-up battery so it wasn’t too big of a deal. I will say that I haven’t seen nurses move that fast since Milo was misbehaving almost a year ago. Nurses came running into all the vent kids rooms and all the kids just looked at them and smiled seeming to ask “What’s going on?” Doctors came by to check on them and so did the respiratory therapists. On Sunday we had a little excitement, while the nurse was flushing Milo’s Broviac it got a little bubble on the side of it, it looked like the thing had an aneurysm. His nurse called surgery to come take and look and fix it. It took them quite awhile but they finally came and decided to repair it. It’s not a bad procedure, they don’t even have to touch Milo and just do it in his room but Milo HATED it. He screamed and screamed until it was done. While he was screaming we noticed a big chunk of something hanging on Milo’s gum and it has a white “something” attached to it. The doctor wasn’t sure what it was so we had a dentist come look at him on Monday. Turned out it was no big deal, just a hunk of gum tissue came loose and the white thing was just gum tissue that had lost blood flow. He is teething so it was probably just pushed out by the upcoming tooth, which still hasn’t made its appearance. So now we made it to Monday March 31 and Milo is scheduled to go home the next day. It started out as a pretty normal day and Milo was playing on the floor. I look over at him to see what he is doing and the repaired portion of his broviac was on the floor! I immediately got him to his bed and clamped off the portion still attached to him because it was an open line directly to his heart. Luckily it didn’t bleed a whole lot. Again his nurse called surgery and eventually they came to fix it. Milo is still not pleased with the surgery people and he again SCREAMED the entire time they were trying to fix it. Just as they were finished they tried flushing some saline through it the thing broke apart where they just fixed it so again Milo had to be held down screaming while they went for repair #3. This time they decided to flush it before finishing the glue job. While they were doing this one of the doctors was standing on Milo’s tube and he couldn’t breathe so he arched his back and pulled it apart again. They quickly finished and said they would be back when the glue was dry to try to flush it. Luckily it flushed so Third Time Was A Charm :0) This brings us to THE BIG DAY! Milo’s nurse got him up and discovered a broviac piece laying in his bed. Both of us started to freak out but realized it was April Fool’s Day right away. Nice trick who ever did that, you almost go us!! We were scheduled to leave at 11:00 and at 11:15 we walked out of the door to the room that had been Milo’s home for the last 7 months. The hall was lined with doctors and nurses wishing us well, I think I saw a tear or two as well. We were home by 11:45 and Milo settled in pretty well. Grandma & Grandpa escorted us home and stayed for a while until Milo fell asleep in his very own crib. Meeting us at home was Cloy and Andy (the guy from the home respiratory company) who set up his ventilator and made sure we were good to go. Not long after that the nurses and their supervisor arrived for training. They were he a majority of the afternoon and as they were leaving a delivery guy arrived with yet more stuff for Milo’s care. Finally by 8:00 that evening we were alone in our home for the first time in 1 year. Milo was admitted to The Children’s Hospital on April 1st 2007 and discharged on April 1st 2008. This was a much better April Fool’s Day than last year!!
We’ve been home for 6 days now and Milo has discovered so many new things. He has learned the simple joy of playing with refridgerator magnets, seeing his reflection in the glass on the entertainment center, looking out the font window, pushing buttons on the TV, swinging and sliding in the back yard, watching Mom cook, taking a bath in the bathroom (we won’t mention how many times he pooped in the tub), playing with toys in his room, spreading all his books across the living room floor, crawling up the 2 steps from Mom’s room to the kitchen, climbing on things, crawling down the hall way, trying to walk down the hallway holding on to the wall, getting stuck under the kitchen chairs, helping to fold (or unfold) the laundry, watching the front loading washing machine spin, he is babbeling more and more each day and coutless more things. Medically he is doing great. He trach has come out twice but we got it back in with no problem. The cords on the ventilator limit his range and he does get frustrated with that when no one is paying enough attention to know when to move it for him. We have 3 nurses who are wonderful. Milo is not fond of me leaving the room when they are here but as time goes on he will get to know them and everything will be all right. In fact the nurse we have today has been here 3 days now and Milo has warmed up to her a bunch. In fact I got to leave the house for about 1 ½ hours today while Milo was napping. This has been a very long post and I’m sure I have forgotten more than one thing so if there is anything you are curious about just leave me a message and I will try to answer it. I’ll add pictures and when I get my DSL straightened out, dial-up takes way too long!


Milo wanted to say “HI” too
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