Megan's New Care Schedule

This post was supposed to be about the symptoms she exhibits from the Mitochondrial Disease and also her Daily Care Routine. I have decided to post Megan's care schedule first because this post would have been way too long it gives an idea of the schedule we are keeping for those who are praying for our continued strength and also those wondering about Megan's current health status. As long as we perform our duties on this schedule as stated, Megan has been fairly stable.

We were almost comfortable to bring her to church this morning, except that she developed another bladder infection this week. In addition to running a fever, she has been going from being awake and very "fidgety" (uncomfortable with rampant spastic muscle movements) to being completely knocked out by the extra pain and anxiety medications she requires to be calmed (she is taking morphine and valium regularly and requires extra doses in order to sleep - when she does not get the extra doses, she will go over 20-30 hours straight with no sleep at all). It is a very fine line we are running to keep her comfortable but yet still awake. Here is my comfortable, yet sleeping, beauty.


This is her regular care schedule without any extra doses or antibiotics.

6am - Medication

7:30am - Breathing Treatment, Vest Treatment, 8 Medications, and In and Out Catheterization

9am - 2 Medications

10am - Start feeding with protein powder - this is a formula fed into her continuously by a pump her feeding tube.

12pm - Breathing Treatment, Medication, and In and Out Catheterization

3pm - 5 Medications

4pm - Breathing Treatment and In and Out Catheterization

6pm - 1 Medication

8pm - Breathing Treatment, Vest Treatment, and In and Out Catheterization

9pm - 9 Medications, put jammies on and go to bed (start oxygen for the night)

12am - Pain Medication and In and Out Catheterization - Turn off Feeding pump

3am - 2 Medications and In and Out Catheterization

Megan takes a total of 14 different medications, the protein powder with her formula, and wears oxygen for apnea issues at night. The medications are for feeding, reflux and motility issues, seizure disorder, Mitochondrial "coctail" supplements, reactive airway disease, spastic muscle movements, and pain/anxiety management.

Also throughout the day, we get her cleaned up or showered, dressed, get her hair done, intermittently suction any nasal and oral secretions, and change any #2 diapers.

Megan also still has the central line in her chest that we monitor for wound precautions and flush bi-weekly. She will have this until it is determined that she will not need additional blood labs drawn or the possibility that she will need IV anitbiotics administered. We finished the last schedule of the IV antibiotics about a week and a half ago.

We do have a nurse from an agency that comes on Mondays and Thursdays so that I can catch up on housework and spend time with Monica. However, this schedule feels pretty rigorous at times and very tiring, especially since we are setting our alarm clocks for the middle of the night medications and catheterizations she requires (She has not been able to eliminate on her own since we brought her home in late April). We were hoping that she would be able to be weaned off of the morphine and valium doses and that she would not need to be catheterized any longer. However, it looks like this schedule will be our permanent "normal" from now on.

Just for fun. Here is a picture of us playing with the camera on my computer this afternoon. I happened on it by mistake when I was trying to upload the above picture of Megan from my phone. You learn something new everyday. YEA!