Deep Breath...Here We Go!

It is amazing how much power this small piece of plastic can hold.

It holds the power to save lives, it changes lifestyles & buys many people time until they no longer need it. Hopefully tomorrow this piece of plastic will loose it's power over our lives & Milo will no longer need his "little piece of white plastic". Yup 24 hours now Milo will be trach free as long as his airway still looks good. YIKES! What do I do with a child who breathes out of his face instead of his neck?

Some changes will be nice, no more lugging around a suction machine & emergency bag! Won't have to worry about him pulling his trach out, secretions getting dry & stuck in the tube, random things and dirty fingers being stuck into the tube & most of all no more noisy compressor blowing humidified air in him all night long. OK so the last one will be nice but I'm not sure I can sleep without "white noise" in the house. It's been over 2 years of listening to a machine at night. The other night I left it off of him (just put on an HME) and I couldn't fall asleep, I could hear his every breath and I concentrated on that, guess I'll get used to it.


Some things will not be so nice, our nursing hours will probably be cut drastically or nursing (aka a free nanny) will stop in a month. We have such good nurses who feel like part of the family. It will be hard to say good-bye when the time comes. The other not so good thing is that he won't always have an emergency airway. Having that safety net has been very reassuring over the last couple of years. After seeing your child struggle for every breath and sometimes not even breathing the safety of a trach is a relief.


So here we go down a new path on this journey. This afternoon we will go to the hospital & Milo will be admitted. He will be capped & observed overnight, then tomorrow morning at 9:00 he will go to the OR with his fantastic ENT doctor who will do a bronchoscopy to take one more look and make sure his airway is good. He will most likely come out of the OR with no more trach, a naked neck. I have to admit I'm concerned about him coming out of anesthesia without his trach. He is not the most pleasant child waking up from anesthesia and I'm afraid of how he will handle not having his artificial airway when he is stressed. If he makes it through that though I think he will be just fine :0) We will probably have to stay at least 24 hours after the trach removal to make sure he is doing well then we can come home.


A naked neck, I haven't seen his neck without something on it in 2 years, 3 months, 1 week & 4 days. I think he will look strange without it, at least for a little while. Most of the time when I look at him (or any kid with a trach) I don't see it anyway but it's just who he's been for so long. I also wonder how attached Milo is to his trach, I wonder if in some way he will miss it...


I have to finish packing for this fun (insert sarcasm) trip. Keeping a 2 year old who is feeling well & healthy entertained in a small hospital room for 2 days is going to be no walk in the park. Because he had MRSA he is not allowed in the play room or to wander the halls while he is admitted. Luckily we are going to the floor with all our hospital friends so hopefully he'll be distracted, and some new toys should help too :0)


Well, I'd better run. Your thoughts and prayers during the next couple of days would surely be appreciated. I'll try to keep you updated & post pictures of Milo's naked neck as soon as I can.

Playing Catch-Up

It's taken me a while but I finally got pictures from the 4th of July weekend posted :0) We went to Alamosa on the 3rd and came back on the 7th. There was so much to do and Milo was a trooper. The weekend wore him out though and he slept in until 10:30 on Monday morning! Here's what we did:

1. Annual 4th of July Parade in downtown Alamosa.

2. Played in the inflatable pool with his cousins at Grandma & Grandpa's house

3. Fireworks, until we got rained on then we sat in the car. Milo could have cared less about the big display but liked the fountains his uncle set off, was scared of the sparkler though

4. Church on Sunday morning

5. We went to Jasper in the mountains where Grandpa has property. Milo's first trip to the mountains he needed a little oxygen when he got upset but did pretty well for being at 9350 ft! It was beautiful & super green up there, the grasses were almost as tall as Milo!

6. Lunch with Grandma & Grandpa on Monday

7. Visited Uncle Gary & Aunt Gaye's farm, got to play on tractors and with some of his cousins.

8. Visited Great Grandma & Great Grandpa, there house is definitely NOT Milo-proof though...

9. Played in a great puddle in front of Grandma & Grandpa house :0)

10. Visited the horses of Grandma's friend Judy. Milo got to pet them and brush one of them. He thought they were great but likes chasing the poor cat more, go figure.

Phew, what a vacation!

I saved the best for last:

If you look really close you can see that Milo has finally decided to wear his nasal cannula for oxygen during naps and at night! I think this was his last hurdle before getting his trach out. Only 7 more days until that happens, YIKES!

PRAYER REQUEST

Last week a good family friend, Peg Russell, suddenly passed away. Her death has left gaping holes in the lives of her family and friends and the community as a whole. Today is her memorial service and I ask that you pray for her young son Quinn, her family & her many friends to find peace as they say their last good-byes this afternoon.

Peg touched my life in an amazing way. It was Peg who asked me if I would be interested in adopting a baby that hadn't been born yet, his mom was in foster care. That baby turned out to be Milo and Peg was named as his guardian ad litem until his adoption was final. Without Peg I wouldn't have Milo. Peg was the one who found a way to make his adoption final before the normal 6 month waiting period, she helped me to negotiate the adoption subsidy & when the county refused to pay it while he was in the hospital Peg represented us in legal precedings and ultimately got a judgement for the county to pay all the money owed. She didn't stop there, she pressured them until the money was finally deposited in my account 6 months later. She went above and beyond for us and refused any kind payment (well other than Starbucks). She was an amazing person, I will miss her.

Peg also brought another child into our extended family. She was guardian ad litem to another special needs little boy, Chase, who my cousins adopted several years ago. She was active in the community and I can only imagine how many families she personally touched in her life time.

Thank you for your prayers, they are greatly appreciated. Today will be a difficult day for many people. We are not venturing down to Alamosa for the memorial service. Milo & I just got back from our 4th of July trip to Alamosa last Tuesday and I think turning around and going again would just be too much for the little guy. I'll post pictures from our little vacation soon :0)

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!