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.

The incision point is healing very nicely. By the time her hair grows back, only about an inch will be below the hairline. If she keeps her hair at a decent length, nobody will even be able to notice.

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!

Having fun baking with mom. Definitely, her wild personality is still there!

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.

Occupational Therapy.

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!

A sock fell. She had to figure out how to get it herself.

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.

Target practice on dad is apparently a fun therapy.

DOP practiced her aim and arm strength by shooting balls her brother.

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.

Relaxing in bed.

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.

Blue, the Sheep Dog, sitting on the bed with DOP and CTB.

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!

Playing cards in Child Life with violinist in the background.

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!

Playing more cards with our roommate.

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

Update on Daughter of Purpose, January 29th

Sorry, I have not updated much. Brandy has kept most people up to date with the basics via Facebook. Here’s where we are at with our little Daughter of Purpose.

We’ve moved to the Rehabilitation Wing of the hospital on Saturday night. We always move in the middle of the night….because it’s fun….and never wakes the kids up….and is awesome….and easy since you’ve already started sleeping….

Sunday we had a fairly easy day because they don’t do any therapy on Sunday. Monday started DOP’s three hours per day Physical and Occupational Therapies. The teams that are working with her are great. She doesn’t like it at all, but she is very easy going and does what they ask for even when it hurts. It’s just in her nature to not say no. Already we see improvements to her motor skills and movements.

She can sit up in the bed (after some help of getting there) for a minute or two and can even lift her arms above her head and bring them down in a somewhat controlled fashion. The PT guys got her to stand up out of bed just to evaluate where she was at. She screamed most of the time, but she did it! There is a long way to go and our best estimate is that she’ll be here for a week, possibly two.

Standing…in a bit of pain.

Please pray for her strength and coordination and a good spirit of motivation to get out of here.

After not pooping for more than two weeks, the doctors prescribed a few different medicines to help this problem…which eventually worked…and then worked too well! So those meds have now stopped. In fact, except for one stool softener, she is OFF ALL MEDICINES whatsoever! In fact, after going to the bathroom this morning, the nurse never put her heart and oxygen monitors back on. Woot! Woot!

Also today, the surgeon pulled off all the remaining steri-strips off DOP’s neck so she could look at the original incision and stitches. It looks great! I had to count the stitches for fun….20!

20 Stitches!

MRIs and CSF

DOP had another scheduled MRI this morning to check the pressure in her ventricles again. I’ve had several people ask me about why she keeps getting MRI’s and what they’re looking for….so here’s the best explanation I can give.

There are four ventricles in the brain and they are essentially hollow areas that produce and store cerebrospinal fluid (CSF). This is the fluid that your brain and spinal cord sit in and creates somewhat of a “cushion” (among doing other things I don’t understand). The tumor was located mostly in the fourth ventricle which also allows the CSF to flow down into the spinal column. So when they removed the tumor, the hope was that part of the brain tissue would just “go back to normal” and fill in where it is supposed to be. The remaining “cavity” would be filled with CSF which is what is supposed to be there anyway.

Still with me? Good.

When the ventricles become too full of fluid, this increases pressure in the brain….that’s bad. So the reason DOP keeps going in for MRI’s is to check the pressure that is building within the ventricles. We have a picture set of what they looked like prior to surgery, but since that contained a 3″ mass of a tumor, that’s not good for a baseline. So the day after surgery, they did a full MRI to use as a baseline. During that scan, DOP still had the EVD line (Exterior Ventricular Drain) exiting her head so this allowed the surgeons to more-or-less control the amount of pressure in her head. So they used this scan as a baseline when the ventricles were at the smaller size post-surgery.

Scan of ventricles a few days after surgery.

Since they removed the EVD line, the only way to know about the pressure in her head is to watch for visible signs and use an MRI. Visible signs are nausea, headaches, eye issues like double-vision, blurred vision or blindness, and a few other things. Except for DOP having double vision, she has experienced none of this. But the doctors are not sure if her double vision is from too much pressure or simply side effects from having their hands and a bunch of sharp objects poking around inside her brain. So we look to the MRI.

If she continues to show too much pressure, then the solutions the doctors would take is to install a shunt. It would be a small tube located under the skin that would run from her head, down her neck and into her lung cavity or some other location that can absorb the extra fluid. It would be permanent…as in, she would have it forever. That would suck.

So we asked all of you to pray that the pressure would go down so she wouldn’t need the shunt.

Of the last three scans, the pressure has seemed to decrease to acceptable levels and with this last scan, the ventricles looked their best. So no shunt! Yeah! For those of you who prayed…thank you so much. For those of you who didn’t…well, you can pray for the next issue and redeem yourself.

Double Vision

Please keep DOP and her double vision in your prayers. She doesn’t seem to be bothered by it. But it bothers us! We were hoping that this problem would go away sooner, but it has stayed fast and we’re not sure it is getting any better. She watches the TV with both eyes open and she doesn’t want to wear a patch on one eye. Both the in-house doctors and the neurosurgeons test her eyes daily and know it’s an issue, but they don’t seem overly concerned. Is this because double-vision is an acceptable collateral damage as compared to….death from a tumor? Or are they not concerned because it will go away? Or are they not concerned because it can be fixed later with corrective lenses? We’re just not sure…

So please pray that DOP regains the perfect vision she had before this whole ordeal started. Our God is bigger than a tumor and bigger than double vision.

Lastly, our friends whose daughter had a heart attack two days after we came into the hospital is now sharing a room with us in the Rehab Center. They refer to her as Cloe The Brave (CTB) because she has always been so brave in this and previous heart surgeries. We’re privileged to allow the girls to see each other and do rehab together! Many of you know both families and have been “praying for the girls” together and we both appreciate that so much!

Thanks for praying and caring so much.

Nathan and Brandy

Update on January 24, 2014

Well, Daughter of Purpose has been moved to a regular recovery room…no longer in PICU. This room is quieter and we have our own bathroom. The nurses don’t check in as often so the pace is a bit slower, which is nice.

Two days ago, DOP started physical therapy, occupational therapy and speech therapy. The therapists come to her room, so that is nice. Here is an update on where she is….

Speech

After only two days of ST, the therapist decided she didn’t need any more. This sounds a bit odd based on our last prayer request of her not speaking much, but it actually makes sense. The problem is not in DOP forming or saying her words. She can speak and pronounce most words correctly. The problem is that she just….doesn’t.

For those who know DOP….this….is….odd.

This girl used to talk so much we would have to discipline her at the dinner table. After a half hour of eating she would still have a full plate of food because she talked the whole time. So, you can see why this concerns us just a little.

According to both Neurologists who have been working with us, this is very common among brain surgery patients. They just don’t talk. And this can last up to a couple weeks. In the meantime, she has been prescribed a low dose of medicine that has shown to help expedite this issue in past studies.

We’ll keep you updated on this.

Physical and Occupational Therapy

This is where she will have some work ahead of her. During the surgery, they went into the head through the back of the upper neck. They pretty much just cut right through all the big neck muscles that hold up and turn your head. DOP still has a lot of pain when her head turns, but it seems to decrease every day. She can very slowly turn her head side to side, but she cringes in the process.

The PT and OT specialists work together at the same time which is nice because the games she plays with the OT to help with fine motor skills helps distract her from the more painful movements in her neck. With help, DOP can sit up on the side of the bed, but she gets tired very quickly. We still have to carry her to the bathroom, but she is at a point where she can at least sit on the toilet for a few minutes by herself. She shows improvements daily, but I’m not convinced walking will come anytime soon. I, however, have been getting quite buff from picking her up several times a day. And I need to go to the chiropractor.

Her fine motor skills with her arms, hands and fingers need a lot of work but she was able to eat a piece of pizza today by herself.

I suppose there is more in her movement than I give credit for. Tonight she was trying to pick her nose because the dry hospital air was bothering her. As a result, she got a bloody nose and it got all over! She’s such a trooper…she just laughed as the nurse and I cleaned her up.

Please continue to pray that her strength returns and her motor skills improve. Pray that her neck pain reduces and her neck muscles get stronger.

Eyes

Many friends have been asking about DOP’s eyes. She is still seeing double, but the shaky movements you see when you look at her seem to be much less than a week ago. She’s frustrated at this….since it is what brought her in here in the first place.

Please continue to pray that her eyes will get stronger and she will eventually only see one good image.

Rehab

The hospital has a very good onsite rehabilitation center. There is limited availability and certain qualifications must be met prior to being admitted. DOP had a consult with the doctor who runs it. Turns out, we knew her! (More on that in a bit.)

We found out that she meets all of the qualifications and that insurance has approved it. Originally, we were told this part of the hospital does not do admissions on the weekends, but that seems to be changing since the nurse told me we might move in on Sunday. Then it changed to Saturday.

Scheduling with this place is crazy….nothing, nothing matches anyone’s schedule. But DOP is getting great care so we don’t mind just going with the flow.

Everybody we talk to in the hospital says that the Rehab is the…place…to…be! So here’s to hoping our hopes are not let down! Apparently the rooms are much nicer, DOP can wear whatever clothes she wants from home and there is a kitchen we can use. She’ll do therapy several hours a day…so here’s to hoping I can get more school and work done too!

This image was taken several days ago, but she looks great in her homemade gown from “Auntie Mo!”

Adaptive Sports

So….a bit of history for those who do not know DOP real well.

DOP had Polio as a baby when in Russia. As a result, her legs are weak. She can walk, but she requires braces and she has a funny little limp to her gate. She’ll never be an Olympic runner and has difficulty with many sports.

Stairs are her worst enemy.

But she can get around just fine. She can swim, get in our very large car by herself, play baseball and various other things. She is just unstable sometimes and a random fall is just part of our normal entrance into every store.

Enter Children’s Hospital’s new Adaptive Sports program which is designed for those who have physical disabilities and their families. We have participated in this a few times in the past. DOP has played sledge hockey on ice. It’s the coolest thing to see a bunch of kids who can’t walk (or have difficulty walking) play ice hockey on these little sleds. They also do water sports, rock climbing and snow skiing. We were planning on going rock climbing with the group two weeks ago….but somebody had to go and get a brain tumor!

Loving the Ice Sledge Hockey!

Some of the people we have met during these outings, happen to be people who work in this hospital and have now worked with DOP. The doctor who runs the Rehab center is the one who helps put on the Adaptive Sports Clinics. She knew who we were before she entered our room. How cool is that?

God has paved the way for many things in this journey of hers….ours….whatever. There are many areas that we see God has made provisions for our family and for DOP’s recovery. We’ve made many new friends who have showed more love and support than we knew we could absorb. Our dearest friends, Randy and Monica have come to our house almost every day to help take care of our other kids, clean the floors and heat up leftovers for lunch. They’re the absolute best and we could never have come this far without them.

So many other friends and family have brought meals every day to both the home and the hospital. The support we have been given is overwhelming. Thanks friends!

But we’re not done yet. Certainly, DOP is no longer in danger (I weep just thinking about it) of the tumor, but please continue to pray for her recovery, her mind, her drive to get well and her strength.

As always, thanks so much for the prayers and support.

Nathan and Brandy

Tuesday Update (January 21, 2014)

Ever since surgery, DOP has had this little tube sticking out of the back of her head. It’s called an Exterior Ventricular Drain, or EVD. It connects to a hanging bag that collects the fluid that builds up over time.

EVD Collection Tube

The funny thing is how this whole EVD thing works. It’s rather simple, really. It’s all based on simple physics…gravity to be specific.

So the nurse hangs with a rope this little collection tube exactly parallel to DOP’s ear canal. When leveled out, this is the Zero Point. If she lowers the collection tube below the ear canal, then gravity kicks in and the fluid drains out of her brain, thereby reducing the pressure in the brain. If the nurse raises the collection tube above the ear canal, then it increases the pressure in the brain because it takes more before it drains into the elevated tube. Raising or lowering be degrees allows the doctors to monitor the pressure and also how much fluid is being produced. This all makes sense…until you see how they level it to the Zero Point.

They use a yard stick ruler with a level bubble.

Really.

All this technology around us…..

We have the ability to reach into someone’s brain and remove a tumor. We can scan their head with touchless MRI technology and see microscopic bits of tissue. The child down the hall has had heart surgery and has a dozen tubes in her body. The nurses can recall any amount of patient data wirelessly from anywhere in the hospital with these cool little portable computers.

But when it comes to leveling a brain drain….we use a level and a rope.

Awesome.

Last night DOP went in for another MRI. This one went fairly quickly and they let me go inside with her again. For all three of her MRI’s she has gone in without sedation. She is such a trooper! I know full grown adults who can’t do that! The reason was so the neurologist can determine how much pressure is building up inside her brain from fluid and to compare this with the EVD readings.

MRI room

MRI thru glass

As of this morning, they were not happy with the results. They’re not bad, but just want the pressure to be less. So they’re waiting another day before removing the EVD from her head. Please pray that the pressure continues to level out to normal. If it doesn’t go down fast enough, they’ll resort to a permanent shunt that will have to be installed under her skin down her neck into her chest.

That would just suck.

So please continue to pray for any swelling and brain fluid drainage, etc.

Lastly, Brandy and I are increasingly concerned about her speech and fine motor skills. Everything in her personality seems to be in place, except for her lack of talking. If you know DOP at all….she’s never been lacking words! We’re not sure whether it’s hard for her to talk, or hurts, or whether there are some residual effects from the surgery. Her hand and arm movements are still very slow and don’t seem to be improving much.

Is this permanent damage? Will her normal movements and speech return after a while? Will she need therapy? These are all still unanswered questions.

Please keep praying for these issues as well.

Thanks so much for everyone’s support and prayer and help.

Nathan and Brandy