Monday, August 24, 2009

Will we ever get out of here???
So they've changed our discharge date to probably Wednesday at this point. The one thing holding us back is the level of her pain medication. Funny part is that she doesn't need if for pain anymore, just needs it to wean. If it would have been a "normal" surgery, she'd only be taking Tylenol right now. However, she's currently sleeping 20 hours a day, due to her really high dosage of Morphine and Ativan. I worked a good portion of the weekend to persuade the "pain team" to lower her dosage so she'd have more awake time. Unfortunately for us, it sort of backfired as they decreased one and somehow ended up staggering the timing of the other- which has elongated her sleeping time today. They took her down from 12mg/6hours to 10mg/6 hours yesterday, which for anyone who understands is a super high quantity for a little peanut. While lowering the volume is a move in the right direction, it's currently 2:00pm, she's sleeping, and it's time for another dose of Morphine. Ugh. It's going to be a long road, possibly 2-3 months to be done with these nasty drugs. I just can't wait for the normal Mya to return.

3 comments:

Hilty Sprouts! said...

Wow, that's a rough deal. Bummer for poor Miss Mya! I will pray that you stay on track for discharge and for the weaning process.

Jen

jaime.ledger said...

I am sorry to hear you have to stay longer. But, it will make getting home that much better!!!! Little Mya sure is a trooper!!! Hang in there! Our prayers are with her. Any voice yet?

moelynas said...

Wow, I was given this site from a friend because she knows that we are in a similar situation. We have a 3 1/2 year old boy (Wyatt) who has been in and out of the hospital in Boston since before he was born due to a congenital heart defect (severe aortic stenosis). We live in Idaho, but the only hospital/doctor in the country that could do Wyatt's surgery was in Boston at Boston Children's hospital. At 23-24 weeks gestation he had his first heart surgery to repair his obstruction in his aortic valve, second surgery at one week old, third at six months and fourth at 2 1/2 years old. If you would like to see his complete story it is at www.carepage.com it will have you do a short registration, which is free and have you enter a personal password. It will ask for a patient name which can be entered as wyattlynas - All one word and lowercase. He has had a feeding tube in his stomach since he was two months old, and we feel your struggles w/the messes and the smells/spills. Wyatt also has a hyper reflux/hyper gage reflex, which causes him to have a delay of liquids/solids at his gage reflex. This causes him to throw up A LOT !!! This means lots of laundry and changing of clothes. I think that you guys are doing a great job, and Mya is so beautiful. She is such a miracle and from looking at her pics, if she did not have the feeding tube in her nose you would not even know that she had been through such a tough life! If you ever need anything I am always willing to talk w/other parents of kiddos in our situation and offer any guidence that I can, support or just someone to talk to during one of those bad days, which we all have. Your family is in our prayers and we are excited about following little Mya's progress. By the way my name is Monique Lynas and I live in Viola, Id. 208-882-1672 or cell 208-874-7136 Have a great day!