Our Teddy Bear's Journey

Theodore was born with renal failure. This is his story.

Clinic Days

on May 5, 2012

Clinic days just wipe me out. They technically start Tuesday afternoon or evening, when I start packing everything up. Breast pump. Frozen milk (just in case). Milk for the day. Laptop and cell phone charger, just in case. Vitamins and supplements for me. Meds for Teddy. Snacks and drinks for the car. Pack up the diaper bag. Make the decision on how confident I feel about coming home, so I know whether to pack cloth or disposable diapers. Double check EMLA and tegaderm in diaper bag, make sure I have at least one Gtube extension and empty syringe. Pack the kids backpacks with activities, books, snacks, and a change of clothes.

In the morning, I get up early and pump, then get myself dressed, load up the car, then do my morning Teddy routine. Wash bottles from the previous day, administer meds, wash all syringes from past 24 hours. I skip the next two steps in my usual daily routine – drawing up meds for next 24 hours, and measuring out bottles for next 24 hours – just in case we don’t come home. Then blood pressure check, diaper change, get him dressed. At some point, his feeding pump signals that it’s empty and we turn that off and unhook him, though on days I have to leave before 7, it’s not finished yet and I have to do this step in the car on the way out.

Get the kids up, dressed, fed. Pump again. Load kids in car, drop kids off, get on road. Pump on the road. Get to Iowa City, preferably about an hour before our appointment. Gives me time to park, neaten the car, finish up any Teddy-related tasks, feed him, get him in the carrier, grab the diaper bag (and pump if i think i will be there longer than 3 hrs), and walk over.

If we have a 1:00 appt, I leave town by 10, and usually leave the house by 9. We wil get to the car after our appt by 3 or so. Teddy usually has a melt down at that point, which lasts 15-60 minutes. Load him up, grab lunch and refill the gas, and get on the road.

What I have done with the kids determines what happens next. Either we pick them up from my sister in law’s house and bring them home, have dinner together, and then have the evening to do whatever; or we head down to a friend’s house if they’re there, and eat dinner with them and let the kids play and leave by 8 so I can be home in time to hook T up to his feeding pump at 9; or the kids are at our house with a friend and we come home and all eat dinner together here.

Regardless of the above, once we get home, I have to pump and then unpack the diaper bag (remove dirty diapers, bottles, syringes), repack the diaper bag (with clean syringes and diapers), set up the feeding pump for the night, draw meds for the evening and the morning, and put away all the other things I packed up for the day, like my laptop, phone charger, snacks, etc.

I honestly just kind of want to collapse into a heap after I pull in the driveway.

Advertisements

3 responses to “Clinic Days

  1. Oh honey. I know. I don’t know exactly, but I know the endlessness and exhaustion. I remember back to those early days when my whole life revolved around suctioning, feeding Evie, trying to keep her from puking into her trach and drowning, pumping, plopping Aleyna in front of the tv, doctor appts. Ugh. It got better for us, but I know our situations are different and I can’t give you that guarantee. Have you started looking for a nurse? I think our nurse has saved my pumping by just giving me an extra set of hands. It can take a while to find someone so if there’s any chance you may want someone, best to start the process sooner rather than later. Praying for you.

  2. Steve parker says:

    Your days seem incredibly full. What energy strength and endurance it must take.

  3. Christy Helm says:

    Whew! Just reading that wore me out! If you ever need an extra set of hands on those busy days give me a buzz! My kids are old enough for me to escape for an afternoon to help you out!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: