I'll do another "snapshot" schedule when we get into somewhat of a routine at home, but this is the run-down of Malachi's hospital life. Those marked with an ( * ) are things I got to do today.
6:00 A
medication (2 meds)
8:00 A
medication (1 med)
9:00 A
*bathtime, change monitor leads, change bedding, trach care
*medication (8 meds)
*get vitals (temp, resp rate, BP, heart rate, change diaper and weigh)
*weight
*start feeding (lasts one hour)
(first round of meds)
(feeding pump-which we will have at home too)
10:45 A - 11:15 A*physical therapy (I was a bystander)
-supported sit, head turns, extremity range of motion, sucking on paci (gotten worse), grip, transfer, etc.
11:30 A OUT LIKE A LIGHT!
11:45 A*cardiology rounds
12:30 P
*medication (3 meds)
1:00 P
*start feeding (lasts one hour)
*get vitals (temp, resp rate, BP, heart rate, change diaper and weigh)
(daily medication list)
2:30 P - 3:00 P*Photo shoot. (So this isn't a normal occurrence. A group from Riley who handle carseat/transport for special needs kids won an award and they need to submit a photo for the awards conference held in Philadelphia. They--I have never met ANYONE in this picture--asked if Malachi could be in their photo. I mean, who can blame 'em? I wasn't aware that I was going to end up in the picture as well though... oh well.
After they finally got what they wanted, one of the occupational therapists stayed behind to get my written consent for the photo and talked to me about the car seat. A few minutes later she handed me the registration card and it was then I found out WE GOT TO KEEP IT!
4:30 P*medication (1 med)
5:00 P
*trach care
*start feeding (lasts one hour)
*get vitals (temp, resp rate, change diaper and weigh)
6:00 P
medication (2 meds)
8:00 P
medication (1 med)
9:00 P
*medication (4 meds)
*get vitals (temp, resp rate, BP, heart rate, change diaper and weigh)
*start feeding (lasts one hour)
12:00 mid
*medications (2 meds)
1:00 A
*get vitals (temp, resp rate, BP, heart rate, change diaper and weigh)
*start feeding (lasts one hour)
5:00 A
*get vitals (temp, resp rate, BP, heart rate, change diaper and weigh)
*start feeding (lasts one hour)
Shew, Marissa! You will need a schedule person just to keep up! I had a good friend who had preemi twins give me some good advice about meds, so I am passing it along. When she got ready for bed at night, she prepared all the meds for her kids in cups ahead of time for the next day (labeled, of course) So she had cups for morning with the meds labels on the cup, cups for afternoon, and cups for night. It is a great idea that we still use now but with some amendments. We use long plastic pencil boxes now (b/c we need the extra room and the transportability!
ReplyDeletenow we will be praying that the home nurse doesn't ever take a day off =)
ReplyDeletei say that jokingly, but in all honesty, you guys are doing such a GREAT job handling all of it. Justin and I were sooooo overwhelmed when we first brought Moriah home at 3 1/2 months old, and all she had then was a feeding pump. pshaw! that's like child's play to us now =)
Continued love and prayers,
the Nelsons
Ok, I need to stop complaining about my children needing me.
ReplyDeleteYou have such an amazing attitude about this. Will you have a night nurse? I'll be praying for a smooth transition!
WOW!! What a day for such a little guy!! Also what a great gift, that car seat is amazing, I want one...LOL!
ReplyDeleteKeep up the great work you are doing great.
Hugs,
Crystal and Eva