A Day in the Life

I thought it might interest some of my readers how I manage and get through an average day. Some days are much easier than others but some are down right hellish. This "entry" is going to be about home, our precious home that we very much enjoy spending long days and summer nights swinging on the front porch swing.

Ry's alarm for work goes off around 6:15 but that is not before Keegan wakes up screaming between 12-1 and 4-5. He started to sleep through the night around 2 months but being in and out of the hospital has really messed up his schedule and ours. It is a blessing in disguise though because he is supposed to get so many calories/ounces a day and without the midnight feedings I am pretty sure we wouldn't get in the required amounts.

So Kee and I usually try to sleep till around 7:30 at which time I get up go to this cabinet in my kitchen:

His 8 o'clock meds are his Keppra, Nexium and Fluconazol. Keppra is his anti-seizure, Nexium is for the irritation in his lower GI, and the Fluconazol is an anti fungal. I give all meds through his G-Tube in his belly

The morning is spent on the couch, since Keegan is not sitting yet we usually work on sitting up and head control. Most of the time he squeezes a small nap in in the 10 o'clock hour but not always! Daddy comes home for lunch around 11:30 or so, as long as its not fish taco Friday at Taco Tiera! Playtime then ensues and grandma comes home for lunch as well. Mommy is able to do some laundry and get bottles ready for the afternoon.

The afternoon is spent much of the way the morning is, we sometimes watch an episode or two of the Backyardagains. He LOVES them! I think its the bright colors and the singing but he will just stare at he TV and smile. Around 3:00 I have an alarm set to go off to remind me to take his GCSF out of the Fridge and to give him 1.75 ML of Zofran so he does not get sick from the GCSF (GCSF or Filgrastim helps his bone marrow recover and his counts to come back up to start another round of chemo).

Around 4 o'clock the GCSF process beings. I absolutely HATE it because I know it makes him feel like poo but on the other hand it helps his count rebound much quicker than leaving it alone to do on its own and risking infection. Its a double edge sword, it really is. So here is the process:

Step 1:  Get supplies Together

Step 2:  Drawing up the 2.5 ML of Heparin for the flush after the GCSF

                                           

Step 3:  Drawing up (2) 5 ML Syringes of D5W

Step 4: Putting Syringe on Pump to get going...

Step 5: Flushed Kee's line with 5 ML of D5W then attached Keegan to the drugs/pump

Step 6: All hooked up and ready for an hour and a half long infusion

After the infusion is done, he gets another 5 ML flush of D5W then a flush of 2.5 ML of Heparin. Total time for preparation and infusion is about 2 hours give or take. There have been days when I have to rearrange my schedule so I am home to do the procedure, I am sure my mom or Ry could do it but I was trained by the nurse in the beginning and I am very anal on the sterility of the process. But arranging my schedule is nothing compared to betting my baby better!

Daddy is usually home by the time the infusion is done and my mom is soon to follow. We all take turns making dinner and doing dishes. Kee gets fed, more meds are given around 8 pm, same as the morning minus the Fluconazole. Kee's bedtime is approximately 9 pm (give or take). We bought this futon type couch thing that folds out to basically a full size bed that we have moved into Keegan's room. We sleep right next to him, while my mom sleeps in the extra bedroom and my sister Abby sleeps in our bed. It just worked out better that way!

Anyway that is the day in the life of my little family! Nothing too exciting but if anyone else is going through this you know how tedious some of the procedures can be!

Love to All,