Wednesday, July 29, 2009

A Significant Day

Today marks a significant day in Milo's life. Today the balance has shifted. Today the number of days Milo has been at home OUT NUMBER the total days he has been in the hospital. It is a strange kind of milestone, definitely a good milostone though. 16 months ago when he was released from the hospital I looked forward to this day with much anticipation, it had so much significance to me back then. Now it's just another day on the calendar, the memories of all those endless days (and nights) spent in the hospital are growing fainter with each passing day.

Milo continues to do great without his trach. He was grumpy and clingy for several days but after he caught up on his sleep he has returned to his normal happy-go-lucky self. We've hit a bump in the road every now and then with his stomach but nothing out of the norm for Milo. He is making so much more noise now and let me tell you he can now be very LOUD when he screams and screeches :0) Now we have to work on volume control! The best part is being able to hear all his "little" sounds that got lost with his trach. I can hear all of his giggles and laughs, his sighs, and the little babbles are just precious. I savor every one of those noises. In a few months I'll probably be complaining how much noise he makes...he'll be the kid in class that talks non-stop. Milo now has 3 words! Of course his first was Mama, then "open" and just the other day "please". Now open & please are far from perfect but definitely intelligible. I was trying to get him to sign or say "open" on Sunday when he spit out "please" I was so excited that he got his box of toys opened quite quickly.

This Saturday is the Celebration of Hope for the Memorial NICU graduates so we plan on going down to Colorado Springs for this event. It will be the first time Milo & I have driven more than 30 minutes without anyone else in the car. Luckily we have the portable DVD player, what did parents do without these things :0)

I also wanted to take a quick second and that all of you who left kinds words of encouragement for Milo & me in the comments. It is so nice to hear from all of you.

Monday, July 27, 2009

4 Days & Counting

I can hardly believe it's been 4 days since Milo's trach came out. He is too cute, I ask him where his trach is and he still points to his neck :0) I'm trying to get him to sign "all gone" but he hasn't caught on yet. I guess that's good in a way, he must not notice a big difference. Sleeping has been the biggest challenge so far. He just doesn't seem to get to sleep as easily as before & I'm hoping that gets back to normal too. The good thing is that he hasn't had oxygen while sleeping since coming home from the hospital. He seems to be keeping his sats around 94 so at least I don't have to fight with him about the nasal cannula because that has become a huge battle. He did have a little stridor the first evening while at the hospital but it went away while the night resident was deciding what to do. It probably lasted all of 5 minutes. I've been watching him like a hawk though. He was breathing a bit fast yesterday but seemed to settle out and has been fine today. Sometimes he will sound a bit wheezy too but only for a bit. We got a new prescription for Atrovent "just in case" we need it. I will say that he has been more crabby than normal but I guess that's allowed for a little while.

He is making more noise too! He makes a noise that sounds like a siren and it sounded like he was singing a song while we were outside a bit ago. I tried to get video, it's not the best but it gives you an idea

video


He crashed into the wall & fell on the floor while running down the hall the other night and gave himself a shiner on his right eye, that makes for beautiful pictures :0) Just proves he is all little boy! Here's some pictures...


about 20 min after returning to the floor after decannulation



this is what his stoma looked like 24 hours after taking the trach out


playing outside this morning

Thursday, July 23, 2009

Milo's Naked Neck!!



















We got to the hospital yesterday afternoon around 5:15 pm and Milo was immediately spoiled by the nurses. In fact I didn't see him for the next 10 minutes :0) he came back will all kinds of new toys. He did really well playing in the room last night but was not about to go to sleep. I would think he was asleep and try to put on his nasal cannula but he would wake right up, we fought over this for a couple of hours. Finally about 12:15am he gave up and fell into a sleep deep enough that I could successfully get his oxygen on him. Of course it came off at some point but his oxygen saturations were high enough that we didn't bother putting it back on him :0) He did really well with his trach capped, in fact I think he might have been better than without it capped. He slept in until just after 8:00 when we heard someone in the hall say that transport was on their way up get him for his bronch. Kind of a rude way to wake up but we went down stairs bed head and all. His bronch went really well, and he was back in the recovery room in about 30 minutes. They finally let us back to see him and I was a bit disappointed to see the trach still in his neck. The nurse said they were waiting for Dr. K to come and take it out, she wasn't sure if the Dr would be alright with us being there for that or not but we could step out for a minute if necessary. Dr. K came by and asked me if she was going to take it out or if I was so I opted to do it. At 10:00am I took his trach out of neck for the very last time and the Dr. put a bandage over the stoma. He did really well, coughed a bit and cryed, but then fell asleep a bit later. His oxgyen sats actually went up with his trach out and he no longer needed oxygen (he normally does after anesthesia). About 10:30 we went back to his room and about 20 minutes after that he was good to go. Handed me his binky, signed "car" and "outside" poor guy he was ready to go but we have to be here until tomorrow morning. He continues to do well and soon his IV should come out. He just got done having chair races in the hall with his nurse & the charge nurse :0)

Wednesday, July 22, 2009

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.

Wednesday, July 15, 2009

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!

Friday, July 10, 2009

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)