Update on Daughter of Purpose for February 18, 2014

Daughter of Purpose and I stayed in the hospital for 30 days. Yep…a whole month for a brain surgery and initial recovery.

In some respects it felt like forever.

Time frequently stood still as Brandy and I grappled with understanding the medical situation of our daughter. Nurses and doctors came in continuously. They used big words. Just when we thought we understood what was going on, there would be a nurse shift change and new doctors and nurses would come in. They would use different big words. Medicines changed constantly. Then they would stop the meds. On some occasions, time would just stop and stand still. Days turned into more days and those turned into more days. I started losing track of what day it was in the hospital because every day seemed the same. It was like walking next to a train track while a high speed train roars by. You might be moving forward, but it pales in comparison to the train. You can try and see what is happening on the train, but it is completely useless. It just moves too fast.

In other respects, time just flew by.

Although I lost all sense of time while we were in the hospital, as I look back, it was just….done. On several occasions Monday jumped to Friday. 3am skipped to noon. I wondered where the time went and if I missed something. The doctor said the next MRI would be in two days…and then in twenty minutes we were pushing DOP down the hall for the MRI. To use the same analogy, if you’re standing on the high speed train and are trying to look out the window at the passing scenery you can see off into the distance, but you can’t possibly tell what is close by. It’s all just a blur.

I learned there is no real time in hospitals. The doctors don’t follow any logical time pattern. Friends and family never show up when they say they’re going to. The time difference between when you fall asleep and are awoken by the nurse to check DOP’s blood pressure is about 32 seconds. The cafeteria, which is “just down the hall and around the corner” takes 8 minutes and 37 seconds to walk to. A 4 hour brain surgery actually takes 6 hours and 10 minutes. And a 45 minute MRI lasts 30 days….

Brandy says I should be used to it all because my previous traveling days seemed to run about the same way. Perhaps. But the difference is…my daughter’s life was at stake.

And I would do it again….

DOP has been home for just over a week now. She is doing really, really well. When we run into friends or see our neighbors, everyone asks how she is doing. We definitely have felt the love from everyone. So I figured I would give a post-hospital update for all those who wanted to know.

DOP came home with a walker, a wheel chair and a shower seat. She only uses the wheel chair when we need to walk long distances, like in a store or to an appointment in the hospital. She also uses it in high-traffic areas, like at church. Yes, she has been to church twice since being home…her friends missed her lots!

She can walk around the house on her own now, although she is still very slow. The last few days she has put the walker aside and just used counters or walls for stability. She can walk up and down the stairs also! Woot! No more carrying her!

For her daily therapy, she works on her arms with a pull strap and plays with a hard putty to work her fingers. She still uses the walker for her exercises and is capable of getting all the way to the mailbox and back….that’s about 600 feet total. She has built up a bit more confidence, although it still wanes after a while. She will have PT and OT therapy for 6 to 12 weeks at least. But she is doing well.

Her eyes are still seeing double. She says they’re getting better, but we’re not really sure. She wears a patch during the day and switches it back and forth. We have a follow up appointment with the surgeon next week and we’re hopeful she can talk to us more about this. Please keep praying for her eyes to get better.

The talking is back…yep {sarcasm}. Sigh. I failed to enjoy the silence while we had it……

Thank you everyone for your continued prayers and support for DOP and our family. You all are the best!

Here is some other interesting data and facts about the hospital stay. Well, I think it’s interesting.

All of this took place during the 30 days in the hospital…

A PICU doctor once prescribed the wrong medicine. It was really early in the morning and even in my sleepy state I could recognize that something in the medicine’s name didn’t seem correct. I immediately asked about it…turns out, it was the wrong med! Parents, pay attention to the meds when in the hospital. If you don’t know what it is….ask! On another occasion the nurse gave DOP the wrong dosing of medicine. I didn’t catch it until it was too late, but no harm was done. Generally speaking though, she had FANTASTIC nurses and doctors.

DOP got thirteen visits from Northpointe Church staff, none less than an hour long. Honestly, we were completely blown away by their love and support and care. This church knows how to care for their sick kids (and parents)!

62 Starbucks drinks were purchased. I know the name and face of four of the Starbucks employees who work at the hospital location. After two weeks of ordering the same tea at night, the baristas knew my order…so I had to change it up to make myself feel better.

2 of the night guards know me by name and face.

I ate 26 grilled cheese sandwiches with fries or tator-tots.

DOP had 6 MRI scans.

13 days in PICU (Pediatric Intensive Care Unit).

3 days in a recovery room.

14 days in the rehab center.

The operating room is billed by half hour increments.

1 unit of blood was given during surgery.

296 medications given.

314 general and hematology labs performed.

9 chest x-rays taken.

1 page…the total length of the form giving permission to perform brain surgery. One. Single. Page. (Car salesmen could learn something from hospitals)

28 pages….the detailed billing for just the first 20 days in the hospital.

I wrote 9 papers and read 3 and a half books for my university classes. Don’t ask me what they’re about…I have no idea.

DOP took 23 visual, verbal and motor skill tests over two days for a Neuropsych Evaluation.

87 bazillion….the number of texts and private messages Brandy and I received and sent.

3” by 2.5”….the size of the tumor.

4”…the length of the incision on the back of DOP’s neck.

54 meals were brought to Brandy and the kids at home or to me at the hospital.

Our best friends, Randy and Monica, spent countless hours at our house watching our other kids, making meals, and making sure our kids did their school work and chores. One of our babysitters, Sam, also spent a significant amount of time helping too.

Our other kids went through 50 boxes of Kleenex and 10 bottles of Musinex because they were all sick during the same time…for almost as long.

1 visit to urgent care for Brandy.

2 feverish kids.

7 people swooped in to help our family within a half hour of us posting on FB about our daughter’s condition.

56 nightly visits from Little E (in to see Brandy) because DOP was “not in bed.”

I took 23 showers (don’t do the length-of-stay comparison here….)

3 kids started public school for the first time (on surgery day)

7 hours…the exact amount of sleep I got during the whole month. Total.

All this for one Daughter of Purpose. Our family is exhausted, but we are on the recovery now, thanks to living low while at home and all the support we received from everyone.

Nathan and Brandy