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

Update on Daughter of Purpose January 31, 2014

DOP is doing well in rehab. Every day there is a marked difference in her motor skills and abilities. She is talking more, although not as much as pre-surgery. She’s getting more sarcastic with the nurses and therapists….DOP at her finest!

She is eating very well and asks for all kinds of stuff we wouldn’t normally allow her to eat….somehow I’ve become a pushover when she asks for candy at 11pm. Several Gatorade bottles are drunk each day.

Last night when she went to bed, she was facing the left side of the bed. When I checked on her about an hour later, she was lying on her back. When I woke up this morning, she was facing the right side of the bed. She can turn in the bed all by herself! That’s a big jump from just a few days ago when she would yell in agony when we adjusted her neck.

Her daily schedule has increased and is quite rigorous. There are now three sessions each day for a half hour each for both OT and PT. This comes to a total of three hours of hard work throughout the day. Both therapists communicate well with each other and with Brandy and I so everyone knows what everyone is doing.

DOP can also now sit up in bed on her own and helps dress herself. She brushes her teeth in the morning and can use forks and spoons to feed herself fairly well.

Like I said….there is much improvement!

Anxiety From Walking

There is one thing that is kind of new and rather unexpected. She suddenly has this massive fear of walking and falling. Both therapists are working with her on standing up and walking with a walker and this is a major component of her rehabilitation. She is able to do it fairly well given the circumstances. However, for some reason, she is totally freaked out about it. When we ask her to stand up, her anxiety shoots through the roof. She begins to cry and yells out, “I don’t want to do this! I don’t want to do this!”

Honestly, I have not seen her have anxiety like this since her Gotcha Day when we took her from the orphanage five and a half years ago. When it started this morning, I was rather surprised. We talked with her to make sure she was not in any pain. She is not. She is simply scared of falling.

Now here’s the thing….anybody that knows DOP, knows this is really odd.

DOP falls all the time! She always has! And she never cries about it or is scared to fall again.

Until now…for some reason. She’s been through a lot. We certainly get that. But everything else has been fine with regards to her rehabilitation. This just kind of came from nowhere. And she hasn’t even fallen once yet!

We discussed it with the Rehab doctor and later in the day someone from Psych came to meet with us. Basically, we agreed we would wait another day or two to see if this subsided on its own before any sort of medication is discussed.

Please pray for this. Everyone has been very supportive and encouraging when it happens. We pray with her daily and in the midst of her anxiety, Brandy and I have each stopped the therapist to pray with her. Aside from this one hiccup, she is doing great! Please pray her fear of falling subsides and her anxiety disappears.

Child Life

The Child Life department at the hospital is amazing! Every day we get to do something new and exciting. From them delivering movies each day, to playing games and borrowing books, to having a volunteer play the violin for us, this department knows how to help kids have a good time and forget they’re in a hospital. Yesterday, Blue the dog, came to visit. Two days ago, we had someone come and do music therapy with both girls in the room at the same time. The girls played drums while the therapist played a guitar and sang worship songs. We all loved it.

A couple of days ago, we took the girls to one of the play rooms and met several other kids and volunteers. While we played cards, one of the volunteers played his violin. It was fun!

A Big Room

Our roommate, Cloe the Brave, was able to go home today. Yeah for her and her family! While we celebrate that her friend gets to go home after nearly three weeks of being in the hospital, we are sad to have her leave us. Like us, her family has been through a difficult time and it was nice to be able to share our story together. But now, Cloe and her parents can sleep in their own beds, in their own comfortable home. Thanks for all the UNO games and good laughs!

For the moment….we have this massive room to ourselves.

One Week To Go

After meeting with the Rehab doctor yesterday, she suggested we had about a week left here in the hospital. The goal is to get DOP to a place that everybody feels comfortable with her leaving by next weekend. This would put her (and me) being here for a total of one month. Ugh. It feels like way more than that. Based on her performance, this may change by a day or two either direction. Certainly, the anxiety issue needs to be resolved first.

Pray we’re outa here soon!

Thanks for praying and for keeping DOP in your thoughts.

Nathan and Brandy