Wednesday, July 29, 2009
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
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
Wednesday, July 22, 2009
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
Friday, July 10, 2009
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)