And it doesn't always get easier....

Today I had an appt with a Dr. that has his office inside the hospital where we spent the first month of our summer. Even as I was driving that familiar route that I drove every morning for a month, my stomach was churning. I tried to laugh at myself because it was just so ridiculous; Gary was safely at home, working away at the computer, but I still felt a little ill. When I arrived at the hospital, just as it had been every morning, the parking lot was jammed with cars. I was amused by the people driving around toward the front, looking for a space. I knew to go straight to the back of the lot...you have to be there by 7:oo am at the latest to get a space up front and then later in the afternoon the spaces will again open up.

By the time I walked across the parking lot, taking a couple of deep breaths to calm myself, I was feeling better, and then I walked in the doors. The smell was what got to me first. I'm not saying that this hospital has a bad smell. It just has a familiar smell that will forever be linked in my brain with fear, anxiety, waiting and watching Gary suffer. Those that know me well will not be the least bit surprised to hear that I teared up immediately.

After my Dr. appt, I walked to the lab for some blood work and my feet knew the direction to go without my even thinking about it, even the little shortcut that takes you closer to the patient rooms, but to the other side of the hospital faster. I will NEVER go that way again! It made me remember the night that Gary was so drugged and hadn't eaten or woken up for nearly two days. Alyssa and I, trying always to keep each other encouraged and brave, actually had a race to see which way got you from point A to point B most quickly. Inside, we were so sick with worry because no one could really tell us for sure what was wrong with him; yet we hid it from one another as much as possible.

Two nights ago, we were watching a random TV show in which one of the characters was in a car accident and in a coma. Alyssa asked me if seeing the monitors upset me, because she got the chills and was nauseous when she saw them. I definitely had the same experience when watching something earlier in the week. Seeing those monitors, learning what the numbers mean so you can watch them and make sure that they are fine, that's something I wish I would never have to experience again. Then, in this random show, one character grasps the patient's hand and there is the finger monitor that all patients wear and she asks him to "squeeze if you can hear me". It is such an overused plot and overused line and even as I write it, I'm transported back to sitting in my grandma's living room and watching soap operas, but maybe because of that, it is what we say. Even the nurses said that. "Mr. Hook, squeeze my hand if you can hear me. Can you hear me, Mr. Hook?"

This afternoon we hired a company to come and do some yardwork for us. I was admiring the results and commenting how great it looked to have the enormous, practically dead, rosebush chopped down. Gary said, "Oh, they didn't do that. I did it last week." I can honestly say that I freaked out, both with him and on the inside too. He told me that he did it while I was gone, so I wouldn't make him stop. That's so much worse because if something had happened to him, no one would have been here to help him. It means I have to ease up and let him do whatever he wants to do, so he won't sneak around. It's kind of like when you have to let your toddler, then child, then teen have more privileges and freedom because you want them to begin to do more while you're there to provide a safety net; not when they are all alone and you can't help them.

Courage is a wonderful thing. Having peace and resting in God's promises is even better. But I have to admit that sometimes things are even harder now than they were during the middle of the crisis, because they're unexpected and they bring out emotions that no longer need to be kept in check to deal with the crisis at hand. Seeing all the progress that Gary has made is amazing and wonderful, but this side of it isn't always easier.

12 Weeks of Summer (and it's almost over)

What a summer it has been! It’s incredible to take a look back at last spring and even comprehend how much our lives have changed in such a short time.

There is much to share about Gary and his progress. He has gone from somewhere around 10 medications while in the hospital to a couple of weeks left on his ulcer medication and that's it. His blood pressure is usually stable, vision is hardly ever doubled anymore and his dizziness is much improved. Exercise really lowers his blood pressure, but he keeps at it anyway. He is determined to get stronger. His speech is almost back to normal and when he smiles now, there is no droop on the left. Dr. Kim saw him last week and he was grinning like a Cheshire cat after asking Gary about his improvements. He said he never knew for sure that some nerve hadn't been damaged.

This week saw the end of “chairs”. There is no more wheelchair in the early morning and the shower chair will be taken apart and re-boxed. The only special chair in Gary’s near future is a beach chair, as we have decided that we desperately need a short trip to listen to ocean waves and take long walks across the sand, assisted by a wooden cane, because yes, the walker is actually gone also.

Just a few short weeks ago, I shared with some friends that it was heartbreaking to see Gary unable to walk and I cried as I said that no one knew how long it would be before he could play on the worship team again. It was only a few days later that he came walking into the kitchen unaided because he forgot his walker and he regularly forgets his cane now also. And this Sunday, Gary played his first worship service. Alyssa and I were in the nursery when we heard the claps and cheers. At first we had been upset that we were going to miss him; then we realized that we would be crying so much, it was better if we just stayed in with the kiddos. As it turned out, we took turns peeking into the auditorium to see him sitting up there playing the keyboard. I’ll admit it…we took pictures. I'm pretty sure everyone totally understood.

In all honesty it seems like May 27^th was a million years ago. If I even start to list all the changes in our lives, I get overwhelmed. Gary is not the only one who has changed…the girls and I see life in a totally different way. There are some trivial things that mean more than anyone can imagine, like watching Gary setting up the sprinkler or walking through the grocery store. There are also many trivial things that make us all impatient; I’ll do you all the favor of not listing those here. Amy tells me that she has so much trouble now dealing with people who are constantly in a bad mood for no good reason (which is kind of funny if you knew her as a teenager:)). Alyssa struggles a lot with those who take good things for granted. She knows how incredibly quickly all of that can be taken away from you.

There is a country song called, “Live Like You Were Dying” and it expresses my feelings so well, “I loved deeper and I spoke sweeter and I gave forgiveness I’d been denying…I was the friend a friend should be.” I think all of us realize that not only is our time on this earth finite, we should truly fill our days with the things that matter: God, family, friends, talking with one another, reading good books, eating good food, taking care of ourselves, going places, pursuing our passions and yes, even watching our favorite TV shows:). Alyssa and I have pretty much given up facebook. I check in a couple of times a day for a few minutes and she only gets on about once a week. I’m only on the computer to write or to prepare for another year of school. I’ve also found that housework is just as easily done once a month as once a week and the house still looks almost as clean. We love spending time with our friends, laughing together, trying new restaurants, going to movies…just give us a call.

Alyssa and I have been on a search for a “Big Adventure” and she finally settled on one. She is going to conquer her fear of heights by doing a zipline as soon as it cools off a bit. If you hear an echoing, unexplained scream on an early fall morning, just assume it’s her. She is also going to take some chances with some solo dance performances and competitions, just for the experience. “Nothing ventured, nothing gained”. I have some big plans for the school year, new programs to try and what I’m calling our “Downtown Day”. I’ve decided you can study at Central Market, by the lake or at the Arboretum just as well as the kitchen. And my goal is to see one movie a week, if there’s something even remotely interesting. Amy is interviewing for a childcare job and she is on a waitlist for her first ACC math class. Gary has always loved trying new things, so I won’t be surprised by anything he wants to do. We already have some new kitchen utensils, including the butane torch for cooking meringues (and it also comes in handy for browning sausages apparently, as he was doing that for lunch the other day). He did have some disappointments this last week, when his body, which still requires lots of healing sleep, didn’t allow him to experience some adventures with “the merry men”, but they’re planning a Texas BBQ Extravaganza soon that will help make up for it.

Honestly, the last few weeks have been a little shaky for Alyssa and me, as we are still dealing with anxiety over Gary and all that he is doing and trying to do (like exercise for an hour or two a day…I mean, who does that when they’re healthy, much less 3 months out from brain surgery). Just how much anxiety we were feeling was well illustrated this last weekend when Gary walked in from the garage and announced, “I’m bleeding.” I was out of the chair in a split second; both Alyssa and I felt the adrenaline shoot through our bodies. I literally felt faint. You will all be relieved to hear that he just scratched the top of his hand:/ and he’s now been asked to be more careful about his sudden announcements. We’re letting him do as much as he wants to do and take over the old jobs that he used to do, without being frightened (sort of) and this week has been good. I had a 2 ½ hour coffee time with a dear friend and didn’t tear up once and the last three days the house has once again been filled with Alyssa’s laughter. I think we’re finally realizing that this amazing man is on his way back, and like the summer, this is almost over!

8 Weeks Ago Tonight

It was exactly 8 weeks ago that we sat in the ER at North Austin Medical Center waiting for the neurologist on call to meet us there. I’ll never forget the feeling of having Gary call me from the MRI center to tell me we had to meet the Dr. there immediately. We’ve all become so accustomed to waiting a week or two to hear the results of any medical test we take. Immediate consultations with Drs. could mean only one thing.

When I checked in at the ER window to see if Gary had arrived I was told that he hadn’t yet, but “everything” was ready for him; I turned from the window and heard one nurse say to the other, “Is that his wife?” I felt the blood drain from my head and I had to sit down and tell myself to breathe slowly. I knew that he had been fine when he left the house and that he would walk in the hospital just as normal as when I’d last seen him.

One month in the hospital and one month recuperating at home later, Gary is not as “normal” as he was when he greeted and hugged me as he entered the ER that night, but every day there are tiny improvements and we’ve headed into what feels like an almost normal life.

Gary is back to eating and drinking without any trouble. He has had to limit his coffee somewhat, much to his dismay, as it affects his already erratic blood pressure. Mostly, he has to drink less coffee so he can consume more water. Staying hydrated is extremely important for him and his physical therapist helps me regularly encourage water consumption. Most importantly on this subject is that Gary had the stomach tube removed on Tuesday!! I thought I was going to have to make him one of those chains that kids make at Christmas so he could tear off one link each day.

Praise God, Gary’s blood pressure is resolving. After a couple of high readings of 170/95, the Dr. said to completely get off the blood pressure medicine designed to raise his numbers and see what happens. Now his readings vary from 150/85 to the occasional 70/40, but the low readings are infrequent. They usually occur in the morning, after pt and/or when he has been someplace and has to get in the hot car. Upon standing, he will get a little dizzy and have to sit down for a few minutes before continuing on his way. Coolness and hydration are the key (actually for all of us in Texas this summer).

So, this brings us to walking. Although Gary has become quite adept at wheeling around in his wheelchair, he has been instructed to use his walker most of the time. About the only time he uses the wheelchair when we go out is if we are going to the movie. He has gotten quite good at taking the stairs with the walker, but we don’t want to push it in a darkened movie theater. The only drawback with the walker is if he is experiencing dizziness from low blood pressure (or trying to change directions too fast). He has no problem recognizing dizziness coming on now though, so he can sit back down, take a few deep breaths and be ready to move again. Gary is practicing with a cane at pt and once the double vision is completely gone, he will be able to move on to a cane at home.

The double vision is much better. Morning reading at the computer is still not completely focused, but he no longer uses his eye patch. As with everything he does, he is pushing himself to make things work better now! The other day at the grocery store, he put 4 bananas in my hand, only my hand wasn't quite there yet and they smashed to the ground. I asked him if he had seen two hands and just missed the real one. No, he just let go of them too early:), so he and Alyssa will be eating an extra banana over the next couple of days, or Gary said that there is always banana bread.

Speaking of food again, he has made a cheesecake, a lemon torte and many batches of peanut butter and lemon ice cream. He insists on making his own breakfast and lunch. We're still finishing off all the great frozen meals we were given, so I've managed to keep him out of the kitchen at dinnertime. He just bought some fresh Brussels sprouts though and he plans to roast those soon, so it's obvious he's planning to start helping with evening meals again.

A typical day for Gary is many hours at the computer, walking on the treadmill or rowing, lifting some weights and doing leg exercises, physical therapy 3x a week (down to 2x next week) and and finally, a couple of TV shows before heading off to bed around 11:00. He is working part-time again already and I have to fuss at him as much as possible to let us do a few things for him. The other night he decided that he would go outside and start watering the yard. Well, that is definitely not my favorite job, but I went into a whole story of "what if you fall down and hit your head on the sidewalk and get a concussion and blah, blah, blah". He laughed at me, but is letting me water for a while longer:). (Nope, in a quick update, I took Alyssa to dance tonight and when I got home he had started the water in the back yard.)

If you want to hear how his speech is doing, give him a call or come by and visit. Every once in a while, his d, t and r will give him some trouble and there are certain combinations of letters that cause him to sound slurred. In the evenings, he says that he feels like his speech isn't as clear, but we have no problem knowing what he's said. We do miss all our company...that was the most fun part of the hospital! We did have a little get-together for a dear friend that was visiting the states from S. America. It was small, but we're already planning a much bigger "thank-you" party for all of you who truly demonstrated the principle of being Jesus' hands and feet for us this past two months. Gary has to get a little better first though, because he's a much better host than I am a hostess!

I think I have a small understanding of what post-traumatic stress disorder is like now. Alyssa and I are both having some anxiety, worrying too much about little things...I'm tearing up easily and she is more tired than usual and has little appetite. We've talked about it some and feel like we ran on adrenaline for the entire month we were at the hospital; then she went to Ballet Magnificat and I came home with Gary. She was, of course, unbelievably busy and I was busier than usual and both of us were still keyed up, waiting to see what changes Gary would make. Even now, with so many of his abilities back to normal, we find ourselves waiting and watching him...is he doing too much, is he getting overheated, has he had enough water, was that a stumble, is he dizzy...the list could go on and on.

We both know that God has incredibly blessed all of us with Gary's quick and major recovery and we know that worry isn't scriptural, but when you watch someone that you love go through SO MUCH, it's impossible not to feel anything. We feel indescribable joy, we feel unbelievable gratitude, we feel a very raw and emotional love for this husband and daddy, but we also feel a "sitting on the edge of your seat", heart-pounding wonder at what exactly tomorrow holds. But we are "trust(ing) in the Lord with all our hearts and (definitely) not leaning on our own understanding". If we had ever NOT done that in the past two months, I think we, Gary included, would have missed out on experiencing what has truly been miraculous.

Independence Day

I was thinking last night about what independence means to me this year. It certainly has a different meaning than it ever has before.

Independence Day at our house has usually meant something extra fun for dinner, special celebrations or gathering at a friend's house. Whenever possible, sparklers have been involved. Although we've never paid to go to a firework show, we have often found a yard in which to watch a local show. Amy had some daring friends who would put off fireworks in their yards...the really nice (and illegal) kind, like Roman Candles and Bottle Rockets. During my decorating the yard phase, while the girls were little, we would line the edge of the yard with small American flags. While my parents still lived in Albuquerque we would occasionally take a trip there to celebrate my dad's birthday (7/3) and the 4th of July. Neighbors had been gathering at our house since my childhood to eat delicious food, homemade ice cream and set off ground (legal) fireworks. Amy and Alyssa enjoyed those special 4th's immensely.

So, on to Independence Day of 2011...

This year there are no children or teens at our house to celebrate the holiday. Amy's independence began many years ago, but especially at 19, when she moved into her own apartment. Her 4th's are celebrated with friends by the pool or floating on an inner tube down the Comal River. And for the first time ever, Alyssa is not with us on the 4th of July. She is attending a ballet intensive at Ballet Magnificat! in Jackson, MS. Yesterday, they were decorating their dorms, but today they have a full dance schedule. Since this intensive occurs at the same time every year, we probably won't have her home on the 4th again. The girls' independence from us has happened gradually. I have been a mommy for 21 years, which mean 21 years of holiday celebrations.

Alyssa's independence this year is probably the hardest for me to accept. As my mama's girl, I never adequately prepared myself for the day when she would finally leave the nest. Now, I find myself celebrating her independence this summer while mourning it at the same time. I would wonder sometimes if she would turn out to be one of those daughters who stays home and takes care of her aging parents. That is laughable now. Although she has been incredibly attentive and devoted to her dad during his hospitalization, she has blossomed into a self-confident, God-confident young woman. Listening to her chatting with other patients in ICU, encouraging her dad (and me) when things were tough, acting as a hostess to hospital visitors and then seeing her go into the ICU room where one of her friend's father was desperately ill, showed me that she is confidently ready to enter adulthood. Her first foray into the world of ballet intensives illustrates even more independence, as she deals with a slightly difficult roommate, enjoys a variety of ballet teachers, accepts compliments and corrections with equal attention, eats not so hot cafeteria food while assuring that she gets enough protein and organizes her laundry and spending money for the two week stay. Still I glory at her last tweet, "5 days until I see my mommy". It's wonderful to know that I've still got a little time before she's completely independent.

Amy's independence has always been a mystery to me. On the one hand, she let us know from the very start that she wanted her way. Her first kicking, screaming temper tantrum was at 9 months, when I moved a Christmas bauble out of reach. From that moment on she struggled to gain and keep her independence. And yet, while her dad was in the hospital, she mourned the loss of the very help and support that had so often aggravated her before his illness. There were so many times during the month that she texted me about something that had happened and said that she needed her daddy. There's a constant conflict between her never-ending fight for independence and her actual dependency on us. I pray that Amy works this out with us and with herself as she ages. I hope she learns to accept that her need to be around people naturally leads her to be somewhat dependent on others and it doesn't have to be a negative attribute.

Finally, to address who this blog is all about...my sweet husband. Never have I met a more independent man! I don't even know exactly how I fell for him and/or managed to keep him, considering my lack of independence. One night after we were engaged, he was supposed to pick me up and never showed. I went looking for him and found him playing piano in one of the downstairs practice rooms at the college we attended. He had been there for hours and never even realized how late it was. During the early years of our marriage, that blessed young husband would set up his office in our living room because I wanted him in the same room with me, regardless of the fact that we had an extra room for his desk and computer. Until we had children and I finally had someone else to spend all my time with, he graciously spent the majority of his time with me.

And then came the massive brain tumor...

Let's face it, there is nothing independent about being in the hospital. A patient is completely dependent on the care of their family, nurses and friends (and yes, in that order). No matter how independent one tries to be: ice chips and water, going to the restroom, incessant beeping from IV's, bathing, etc. all have to be performed by someone else. I watched Gary struggle to be independent in ICU. We had the forbidden swallowed water incident that led to pneumonia as one example of his independent nature. Doubling up on the number of activities he did in physical therapy showed not only tenacity, but independence. Gary constantly pushed the limits of what he was able to do, which had both good and bad outcomes. Alyssa wrote these words: "Mostly it was taught me that I can’t always be independent, sometimes I have to rely on people. When a grown man can barely do anything, he has to let people help him and I have seen that although he doesn’t like it, he knows he needs the assistance." I found myself marveling at Gary throughout his hospital stay, especially during the two weeks he was in rehab. He worked diligently at all of his therapies, but also sat quietly in his wheelchair or bed in between therapy time. I would ask him if he every felt angry or frustrated and he calmly answered that there was no point in that. He had learned to be patient, to persevere and be dependent on the help of others.

Since we have been home, the one and only mild argument that we have had happened the very first afternoon. Gary implored me to "stop hovering", despite the fact that he had been released from the hospital "under supervision". I didn't honestly think that I was hovering because there was suddenly a wheelchair, a walker, 2 medications, blood pressure to be taken several times a day, a shower and the responsibility of seeing to everything thrown into my day. I just thought that I was "accomplishing" those tasks. But Gary needed to work out what he was capable of doing on his own, and 10 days later we are in perfect sync with daily care. Gary is doing many things on his own: making his coffee in the morning, taking his medicine and blood pressure, doing his exercises, working on the computer and at the piano, getting his breakfast and lunch. He has had to accept dependence in other ways: me driving him places and then helping him get around in the wheelchair and walker, cleaning up after his meals, doing the garbage and watering the lawn, help him with meals and showering and bandaging the stomach tube.

Independence and dependence, for Gary and me, represents his fight to regain everything that he lost during the surgery. We have no idea at this point what the final outcome of that fight will be, but there is no doubt that we will work at it with dedication to achieve a goal of near perfection. If my independent husband has to surrender some of his independence in the end, I have confidence that he will do so with the grace and good humor that he has shown throughout this entire ordeal. And I will learn some independence that I have lacked in the past, thankful that I can depend on God to provide all the strength that I need.

Too Busy...

The man who had a brain tumor removed exactly 5 weeks ago was too busy to go to a movie today. He had to do his speech exercises, do his rowing, make a lemon curd and lemon ice cream, practice piano scales, go to physical therapy and stop by the grocery store. I think that's it...

I'm exhausted...haha!

What a Week it's Been

Random facts about Week 1 - Home Again!

How many times can you go to Walgreen's in one week? We're up to 5 times, I believe and we still had to go to a medical supply store and Pflugerville Pharmacy. We've also been to HEB 3X and Walmart. It takes a lot of supplies to "move" back into a house after a month in the hospital.

We have been blessed by 7 dinners, plus 2 to be put in the freezer for later. Our lawn was mown and edged. Amy came and washed our cars. One lovely surprise was when our friends who own Welcome Home Cleaning Services sent out a crew to do a thorough housecleaning for us. Thank-you so much, Frank and Maria.

Gary had his first outpatient PT on Wed. As usual, he "exceeded expectation". After the evaluation the therapist said that, based on his review of Gary's medical record, he didn't expect Gary to be anywhere near this level already. Of course the therapist mentioned the fact that Gary was "in such great shape before the surgery" several times, as being the main reason that he is progressing so quickly. I think that we all need to be learning something from this, but I have yet to start working out with the Bowflex. Gary, on the other hand, has rowed 3X this week for 15 min. He's doing 3 sets of 15 curls and dumbbell presses with 8 lb. weights and 3 sets of 15 on his deltoids with 5 lb. weights. He also does all of his other regular PT exercises, speech therapy and is playing the piano regularly to improve his dexterity. He mentioned slow walking on the treadmill and I threw a fit.

There haven't been any episodes of fainting, which was my one huge fear. Gary does have some dizzy spells in the morning if he stands up, so he stays in his wheelchair. Don't think for a minute that keeps him from getting things accomplished though. By the 2nd day home, he had entered all the receipts from the past month in the computer & checked the mail and bills. He told me after the 3rd morning of getting up and making his coffee that he could do that by himself (thank-you very much), plus he gets his own breakfast and lunch just like he always has. He decided that he wanted to make a chocolate topping for his ice cream, as well as a lemon curd. And he washed the dishes one night while I was showering, but he got in a lot of trouble for that one:).

During the afternoons, Gary uses his walker around the house and for the last two days on any outing we take: Dr. appt., PT, Walgreens, World Market and HEB. Did you know that you can actually grab a 40 lb. bag of potassium and get it into the bottom of the cart, supposedly holding onto your walker. while your wife panics. AND you can lift it out of the bottom of the cart and put it into the car, holding onto nothing, while your wife's heart rate speeds up considerably? He is doing a great job walking with his feet straight ahead. That is so different from even a week ago.

We've had several visitors this week and I'm so thankful for that. Ariana has stayed with us a few nights and she had a friend sleep over last night. We love having her here, but we're letting her work with her dad now to make future plans. (Praise God Richard is showing improvement.) My sweet parents are heading back down here on Tuesday and they will stay with Gary while I go and pick Alyssa up from Ballet Magnificat in MS. It was pretty traumatic for me to be at home without her at first, after all that has happened, but it's been wonderful to hear what a great time she's having. She loves dancing 32 hours a week, going to chapel, studying and hanging out with her small group. I am looking so forward to hearing all about her experiences.

Thanks for all your prayers and help. We'll continue to let you know how things are going. I think it's going to be exciting to see how God uses all of this in our lives. I know that we have all learned a lot of lessons. I'll be sharing more about that on my blog over the next few weeks.

And the real work begins!

The worst is over/The real work begins
After 4 weeks in the hospital, Gary is coming home!

He comes home:

• eating a normal diet
• horribly stiff neck from before surgery gone
• tinnitus gone
• hearing better
• speech almost back to normal, but he'll have lots of speech exercises to do (working on d's and r's especially)
• with a stomach tube he doesn't need to use that can't be removed for 4 more weeks
• 12 lbs lighter
• 30+ stitches in his head
• still with hypotension - mornings can be 90/50 (Crucial prayer request - low blood pressure causes him to get dizzy, get a mild headache and almost pass out. He has learned to exercise in bed go help raise bp and get up very slowly to make sure that he doesn't fall.)
• using a wheelchair (during low bp time), a walker and held by a gait belt around his waist
• weaker on his left side
• with double vision that is corrected by wearing an eye patch, but will need the help of a neuro-ophthalmologist
• attending 3 sessions of physical therapy every week
• with many hours of exercises a week required
  
• his sense of humor completely intact - he's celebrating the handicapped sticker we get to put in the car:)
• his sense of compassion intact - on Thu. a sweet friend of Alyssa's will be coming to live with us for a period of time...2 weeks, 2 months or even longer...last Sept., her mother died after a long battle with breast cancer and now her father is in critical condition, fighting a bacteria that is destroying his vital organs. It could be many weeks or months before he is able to care for his 5 children again. Please pray for this dear family as the kids are put in different homes and the father fights for his life.

We are so thankful for how God has watched over Gary and we appreciate all the visitors, prayer and support we have received over this month. Please come and visit now that we're home too. We've enjoyed seeing everyone and are look forward to many more hours of company.

Love,
Gary, Kay, Amy and Alyssa

Alyssa's Father's Day

Dear daddy,

This father’s day means more to me than any other. The past few weeks have been a roller coaster; crazy, unbelievable, amazing and any other word you can think of. Through this experience I have come to see how blessed our family is, how blessed you are and how blessed I am to have a daddy like you. I don’t know what I would do without you. Every time I see you, you are getting closer to the extremely healthy man I know. Today is going to be kind of hard, but at least you are on the road to recovery. Each time I am at the hospital and want to turn down an activity, you always encourage me to participate. While at Ballet Magnificat I will be constantly thinking and praying for you! When I get home I know you will be doing fantastic. You are an amazing daddy and I love you to pieces! Love, Alyssa <3

My dad is still in rehab. His eating is completely back to normal which he is very happy about. He is also up getting around, but he is using a walker. He still has double vision so he switches a patch back and forth. Seeing double is making him dizzy, but the dizziness is also because his blood pressure is low. Another weakness are his weak ankles, which he passed down to me, so this is making walking a little difficult. All in all he has come really far and I am very proud of him!

I have begun to understand the things I needed to learn from this. Mostly it was taught me that I can’t always be independent, sometimes I have to rely on people. When a grown man can barely do anything, he has to let people help him and I have seen that although he doesn’t like it, he knows he needs the assistance. Another thing I have learned is it is ok to break down. Strength is a good thing and I have been strong for both of my parents, but when you need to break down go ahead or you’ll just be a grump the rest of the time. I still haven’t gotten to the point of actually bawling and letting everything go, but I understand that when I need to, I can. When I do feel freaked out or worried, God’s love is everlasting and He will always put a calming hand on me. Without Christ, this whole experience would have been a tragedy and I would never have been able to make it through. God has blessed my family; for some reason my dad is meant to be on this earth or He would have taken him away when He could. I want to be on this earth for a reason and I want to follow my dad in whatever reason that is. Lastly I have learned how amazing and supportive my friends are and that I need to be as supportive. Every time I have needed someone they have always been there. They have made me smile and reminded me that things are going great and can only get better from here.

As this adventure continues I hope to learn more lessons and have God’s love become more and more evident to me. I wanted this summer to be unforgettable and amazing and my prayer is being answered. It wasn’t really answered in the way I was thinking, but God always knows what is best.

Remember (a letter to my daughter)

....we're making it through this and that means we can make it through anything! Your dad's faith and persistence through all of this; my ability to be strong enough to hold onto God's promises without any doubt; your unswerving loyalty to your family and your steadfast joy in the life that God has given you will always be a testament to others. We will hurt, we will ache, we will grow tired, but we will always know that we are blessed.

Thanks for being the most amazing 16 year old daughter that anyone could ever have. Even as I write this, I realize that God knew from the very beginning of your life that we would be going through this during your 16th summer and He knew that it would take a very special person to be able to have this happen and still find joy, peace and contentment. He knew how you needed to be raised and the young life experiences you needed to have. He knew you needed to have a passion that consumes you and allows you to pour out your emotions, He knew who your friends should be and exactly who should be the first special guy to capture your attention. What an amazing God we have and love!

I love you!
Mom

Save the good news for last!

Bad news:
Well, we thought Gary might be getting to come home before this weekend. At this point we haven't heard anything, so I'm pretty sure he'll be there another week. (If he were coming home, they'd be scheduling me for helping with pt and speech therapy.)

The reason for the delay is that they can't get his blood pressure to stay high enough to keep him from getting dizzy. Two nights ago, he got up with the nurse and passed out again. Luckily he didn't get hurt in the fall! His blood pressure was 80/40 once they got him to bed. They are now giving him a fairly high dosage of hypotension drug to raise his blood pressure, but even after sitting up all day long today it was only 110/58. If he stood up, it would drop even further. I did some anatomy research and found that blood pressure is controlled by the medulla, which is in the brain stem, which is where the tumor was located.

Vision is still blurred and doubled.

Gary got a new roommate tonight...a very uncomfortable and deaf 85 year old man:).

Alyssa is really having a hard time with the thoughts of leaving for her ballet intensive in 9 days since her daddy is not well and at home. (Don't mention this to her. I told Gary to talk to her about it and she was really upset with me...for about an hour;), but I don't want to push my luck. Just pray that she will have peace of mind and be able to enjoy this awesome opportunity to dance and spend time worshiping the Lord.)

Good news:

Gary is working really hard on all of his exercises. He is so calm about all of this. I am so proud of him for being patient and diligent.

His speech is getting much more clear and swallowing has become a breeze.

Yesterday, during pt, his blood pressure was a little higher and he walked for about 10 minutes. Praise God his legs are strong!

Tonight he had his first chocolate milkshake from Chik-Fil-A.

We have the sweetest, kindest and most generous friends and church family anyone could possibly have.

First Meal

Okay! I HAD to share a little bit about today. Gary had his first coffee and his first meal of mashed potatoes, pureed chicken and green beans, soup, pudding, milk and tea. He actually complained that he ate too much!!

He has started a new medication for hypo-tension. When he stands up his blood pressure sometimes goes to 80/40. Hopefully this will give him the opportunity to be able to work on walking more without getting so dizzy.

He is still seeing blurred or double-vision. They have put a patch over one eye. However, the neurosurgeon said that the eyes and swallowing tend to come back about the same time, so we'll hope that is just around the corner.

He "works" tomorrow from 9:30-2:00 and then can have visitors the rest of the weekend. Since he is in a double room, only 3 people can visit at a time. Rehab is right across from the Women's Center at the east entrance (off Renfert Dr.). I'm not sure if the entrance is open on the weekends. You can also find it by going to the ground floor and walking south of the dining room. (I said east last night...oops!)

Going to Rehab

Funniest story since Gary got to rehab. Alyssa posted it as a facebook status that her "daddy was going to rehab". There were many thumbs up and "Awesome" comments, but one of her friends said, "HOW IS THIS A GOOD THING???" (She thought he was going to jail.) Guess she'd been missing all the other posts we had made.:)

Gary had 2 1/2 hours of physical therapy today. He said the first hour went well, but he was too tired to do well during the 2nd hour. 30 minutes was just standing up and sitting down from the side of the bed. The dizziness is what is overwhelming him right now.

Speech therapy and swallowing went well...more pudding and orange julius, plus the electrical stimulation. Alyssa and I took him on a wheelchair walk around the hospital and ran into Phil. We sat there for about 20-30 minutes visiting and when we got back to the room we realized that he was swallowing the entire time because he didn't have to use suction.

He was so incredibly tired that once he got back to bed, he immediately fell asleep. We kissed him goodnight and left at 7:30. I have to say that both Alyssa and I had a weird feeling today, getting back to a semi-normal schedule and only sitting with Gary for a short period of time.

I won't write every day now, especially as there will be a lot of repetition during rehab. Feel free to visit him 4-8 any day, plus I'm pretty sure that most of Sunday will be open. I can't even begin to thank you all for your prayers and support.

The Unexpected

Two weeks ago tonight we got the thoroughly unexpected news that Gary had a brain tumor that had to be removed immediately. You all have been going along this journey with us from that point, encouraging, supporting, visiting, listening and most of all, praying constantly.

Well, this evening at 6:30, they took off all his monitors, took out his IV solution and sent him to rehab. Tomorrow he starts intensive physical, speech and occupational therapy.

It would be totally unbelievable if it weren't for the power of prayer!

Visiting hours are very restrictive in rehab. The patients spend so much time working and rest is required between their sessions. They are normally done by 3:00, so after rest they can have 3 visitors at a time from 4:00-8:00. I'm not sure about the weekend, but I'll send out info about that later. Rehab is located on the ground floor, south of the dining room.

Please pray specifically for Gary's swallowing, that he won't overdo in rehab and that he will be able to build his strength up steadily. He has lost 16 lbs. in 13 days.

Now, go hug all your loved ones and let them know how important they are to you!

Riding a Roller Coaster

Alyssa described this as a roller coaster and I will have to agree that
is an accurate assessment.  It seems that for every step forward there
are one (or two!) steps back.

With all of the blood pressure medicines out of Gary's body (and there
were actually 4 altogether), his blood pressure is now maintaining a
normal number.  However, sitting up or standing up can cause wild shifts
in his blood pressure.  I was thrilled Monday that a PT came who had
seen Gary in ICU.  She saw how he had gone from being active and moving
to being bedridden.  She experimented with sitting him up and letting
him get dizzy to the point of almost fainting and then laying him down.
After taking his blood pressure several times, she was able to prove
that his bp was falling drastically and then taking a long while to
build back up.  It just helped reinforce what I'd been trying to say all
along.  HE DOESN'T NEED BP MEDS.

So, as of tonight (Tuesday) he is off of bp medicine, insulin and he had
his last dose of steroids and antibiotic for the pneumonia. I believe he
is no longer getting any breathing treatments either.

As I asked you to pray this morning though, Gary had to have a special
tube put directly into his stomach for feeding.  The advantages are that
he doesn't have a tube down his nose and throat, so he can work on his
speech and swallowing therapy more effectively.  He can also be moved
onto the rehab floor to begin gaining back his balance and strength in
his legs.  It turns out there was an unexpected advantage...Gary had a
moderate-sized ulcer in the top of his small intestine.  As the Dr. said
when he came out to see me after the 5 minute surgery, "We found a
surprise in there."  (As an aside, I want you to know that he said this
as he hands me pictures of Gary's stomach with the tube in place and of
the ulcer, as if he assumed I really wanted them.)  The ulcer could have
been caused by stress from the last two weeks, the large amounts of
Advil they gave him since he can't take other pain medications AND the
steroids that they had to give him to bring down the swelling of the
brain.  I have come to the conclusion that Gary is just not ever meant
to take medication.

It was a long day for Gary.  He couldn't be fed until 6:00 and due to
some incompetence in the nursing staff (truly the first time that has
happened), it was 8:00.  By 9:00, he was shaking his head at Sandy and I
as we laughed ourselves silly; by 9:30, he was sitting up in bed and
starting his speech therapy exercises for the first time since Sat. He
was chewing ice, dutifully sucking it out and not swallowing the water. 
He gave me a DIRTY LOOK when I tried to make him do a higher falsetto e
sound. AND he said that he only saw one of me standing by him, so his
near vision is improving.  Yay!

I'll be honest, it was hard to leave tonight.  He looked so good and
healthy AND there is that little bit of fear about whether there is
another drop on this roller coaster.  I'm just trusting the Lord that
all will continue to improve at this point.

Wednesday or Thursday, Gary will move to the rehab floor of the
hospital.  If you come to visit, you may want to text me or Gary to see
where he's "living" at the moment.  Or ask the 3rd floor nurses where he
has been moved.

I hope that we're coming to an end of these emails.   I'll keep you
updated on his progress.  Thanks so much for your faithful prayers for Gary.
Kay

Waiting on God

I have started this email a hundred times...being clever or funny is completely out of grasp right now.

Since we have moved from ICU, Gary actually seems to be more sick. On Sat. morning, the nurse got him up to walk to the bathroom and he passed out. Luckily, she had a belt around his waist and was able to slide him to the floor carefully. Later in the morning, he was able to wash up at the sink and go for a short walk with his walker. The "merry men" came and he sat in a chair for a while talking to them while I went to lunch. When I got back, he was back in bed and he stayed there the rest of the day and night. He never really woke up except just to say hello or goodbye. He did have a short visit with my dad in the evening and then fell asleep for the rest of the night.

Sunday morning I woke up at 6:40 and could not go back to sleep. After about 20 minutes of trying, I knew that I needed to get up and go to the hospital. I arrived just in time to see him being helped to sit up in a chair and then he passed out. It took 4 nurses to get him back into the bed and in the meantime, somehow his feeding tube got yanked out. He went immediately back to sleep.

I am so thankful for the nurse that he had today. She was much more outgoing and outspoken than any of the other nurses he's had upstairs so far. She listened to me when I said that he was sleeping too much and that I thought his blood pressure meds (4) were the wrong ones or too much or something. She called the Internal Med doctor and between the two of us, we convinced him to remove two of the blood pressure medicines. By this time, the whole family was here taking turns keeping an eye on Gary, talking to each other and trying to "bother" him enough to waken him. After another try at sitting up and another episode of passing out, I literally went into commando mode (with tears), demanding to know why he was better downstairs in ICU and now couldn't even stay awake. The nurse put in calls to the Internal Med doc and the neurosurgeon.

Dr. K showed up within a very short period of time. After reading through the notes and talking to the nurse and me, he decided to keep Gary off blood pressure medicine and give him a higher rate of IV fluid, rather than put him through the reinsertion of the feeding tube. His feeling is that the combination of blood pressure medicine, slight dehydration and maybe some exhaustion from actually doing too much, too soon, too well in ICU may be causing him to need this sleep that is now going on 45 hours with only a few coherent minutes. He promised me (and I'm holding him to it) that if anything bad was going to happen as a result of the surgery, it would have already happened.

He is still sleeping as I write this, but we did wake him up enough to feed him some ice chips and do a few speech therapy exercises. Alyssa laughed at me while I cheered him on in his "La-la's" and we saw his tongue touch the roof of his mouth several times. If he can swallow just a little tomorrow, they might be able to thicken liquids enough to feed him and not have to reinsert the feeding tube.

Please God, help him to sleep off the blood pressure medicine and still have a blood pressure number that isn't scary. Give him the strength to wake up and not be dizzy, so he can begin his pt exercises again. Help every little part of his mouth to being working correctly so he can swallow. And if there is some unknown factor that is causing this complete exhaustion, guide someone to figure it out very quickly. In the meantime, thank-you so much for mom and dad, who have basically stopped everything to be here just in case I need help. Bless Alyssa, who has sat with me many hours today, encouraging me to stay positive (my sunny-side up kid). Thanks for times of laughter with Amy, Alyssa and Sandy, who have a gift of helping me find the "funny" in everything.

Quick Update

Quick update!

Gary got his shunt out (or as he calls it, his "brain drain"). That means they can start weaning him off steroids and bring down his blood pressure and blood sugar, getting him off two more medicines.

He was also moved out of ICU. Thanks for your help, David and Susan, because of course they decided to move him at the last possible moment and while I was downtown with Alyssa at her performance. If you come to visit now, he is in room 347.

Although there are many things that Gary needs to re-train his brain to do, the biggest one right now is swallowing. Can you imagine Gary without coffee, ice cream, cheesecake, etc? We can't ask him to make cheesecake and creamy jalapeno if he can't eat it. It will change all of our lives. I'm being flippant, but trust me, I am very serious about how important this is to Gary. We all know that he loves to cook and eat and I can't see him with a feeding tube for the rest of his life. Please pray very concentrated prayers over this weekend that his dropped palate will raise and swollen tongue will normalize and he will be able to swallow.

Thanks to the huge group of friends that showed up to support Alyssa at her performance. Many of you are the same people that have spent hours at the hospital. You are wonderful, amazing friends and we all love you very much!!!!

I'm actually going to bed before 1:00 tonight, because Gary has gotten into the habit of texting me about 7:00 AM to tell me all that he's already done in the morning. Hospital life starts very early in the day.

Kay

0-100

0 Blacks spots before his eyes
1 clock on the wall for one second, but that means his eyes are trying to remember to work together.
2 Arguments over swallowing the water on the little sponge instead of sucking it out. PLEASE pray about this for me because they are talking about possibly sending him home before he can swallow and I can't make him not swallow water.
3 Nurses discussing his condition, "He's made amazing progress for someone who had an 11 hour surgery on his brain." "11 hours? That's unbelievable."
4 hour nap in the afternoon...he's getting his days and nights mixed up.
5 o'clock this morning, when they will do another ct scan to see if they can remove the shunt and move him out of ICU.
6 o'clock pm, when I have to take Alyssa to Ballet Under the Stars, which means the ICU is closed until 8:00, which is when I have to be back for the show. If anyone is free to visit Gary Friday and Saturday at 8:00, I know he would appreciate it.
9 visitors today for all of us, if you include little Zachary, who gave me and Alyssa the strongest possible hug you can imagine. It was very comforting. Thanks, sweet friends.
10 o'clock is when Ballet Under the Stars is over and we head back to the hospital to tuck him in for the night (and tattle to the nurse that he is swallowing water).
20 is the amount of times he has to repeat his leg lifting exercises, but that just means 40 to him.
100 % grateful that after all that Gary has been through in just one week, he is still smiling, working (too) diligently on his exercises, never giving up, never really losing his temper (just one time when he yelled at his "stupid brain" for not lifting his foot), when he has every right to be very angry that this has happened to him. That he can go from being fully functional one week ago, to not being able to make his tongue or legs do exactly what he wants them to do and yet never really complaining (just minor whines occasionally). His one rebellion is water.

Headed to bed now...thank-you dear friends for praying constantly for this precious man.
Kay

LaLa Land

LaLa Land

The state I was in at 7 AM when Gary called to announce that he had been up since 5 AM, had a ct scan (which looked great), needed me to bring his breathing machine to the hospital and hoped we were all happily asleep (after the house phone rang???). As I walked back into the bedroom, I realized that instead of just listening to him talk on the answering machine, I could have picked up the receiver. I went back to bed and slept another hour.

The state Alyssa was in most of the morning, with a slightly glazed look in her eyes. Thanks to Emily, Matt, Ryan and Thomas for coming by and perking her up!

The look of Gary after he had actually sat in a chair for a couple of hours visiting. I saw him begin to sway a little, so he went back to bed. He was up in a chair again tonight and SO excited to finally receive some nutrition in his feeding tube. He's getting Glucerna. We're telling him it's coffee flavored because it looks like coffee with cream.

Where the really cranky old man that was constantly screaming and disturbing Gary finally seems to have gone. They finally found the right sedation, and all is much quieter, so we're hoping Gary gets a good night's sleep tonight. They didn't remove his shunt. It's best to leave it in longer and have Gary stay a couple more days in ICU, than to remove it prematurely, which could cause brain damage. We don't understand all the details, but we pray the Dr. does the exact right thing for Gary.

Pretty much a theme for anything Alyssa and I said today. We're having a contest tomorrow. The one who says the most stupid things or things that don't make sense has to buy the other coffee.

Gary swinging his feeding tube around in circles with his neck and head, stretching the 4 inch incision and doing no telling what to his swollen brain. Ruby's to blame this time, not me!

Where I was when I received the text from Alyssa, after her rehearsal for Ballet Under the Stars, that the Tate's are "bringing her to the hospital" and I have a sudden panic feeling as I wonder how badly she got hurt! First I gasp, then I realize I'm at the hospital and they're bringing her to me, then I start to laugh and eventually have a moment of hysteria as I realize how crazy I've become. Then I laugh more.

Where I wish all the stupid gnats that have infested the plants in the waiting room would go. There are sometimes clouds of gnats while we're eating. The vinegar and dishsoap in a cup trick is working, but there are just too many of them.

What everyone needs to pray Gary can re-train his tongue to say, "la, la, la". He can't lift his tongue from the bottom of his mouth to the roof of his mouth. Right now, everyone say "la, la, la" and thank God for how intricately he made our bodies that we can just do that without the slightest thought.

To those many of you who have commented on the time I'm sending out these emails, where I'm headed tonight just a little bit earlier. Thank-you all so much for your concern, your hugs, your visits, and your prayers.

A Golf Illustration

In golf, a break is the tendency of a putted ball to roll left or right of a straight line. This deviation may be a result of a number of factors or combination of factors including uneven surface, grain of the grass, how firmly the putt is struck or, in extreme circumstances, wind. Well, today we hit a "break". Everything that had been going along so well started rolling to the right or left and the deviations are certainly the result of a number of factors.

Gary started the day with an MRI. Then he was wheeled back to the room, where he continued to try to sneak a little more water than he should. When a man is thirsty......

We enjoyed the company of a couple of friends and a precious young friend of Alyssa's who is devastated that this is the third close friend of hers that has a parent suffering from a brain tumor.

Next test for Gary was the ever important barium "swallow test". It meant unlimited water and preparation for soft foods. Alyssa, Cathy and I went to grab lunch and when we got back, the nurse looked at me grimly. He didn't pass the test, and he had an early stage of pneumonia...possibly from aspirating too much water or just the difficulty breathing or both. Antibiotics now become the 6th(?) medication he's on. No water at all...he can only swish it around in his mouth and suck it out with a dentist-like instrument.

Dr. K., the neurosurgeon that performed the surgery came to discuss the results of the MRI. Of course it was one of the two hours I was away from the hospital from 9:30am-10:30pm:/. But he was kind enough to call me and repeat everything to me. This man is amazing. I don't know when he ever sleeps. The good news is that the MRI shows no sign of the tumor, nor sign of stroke. STROKE! I didn't even know this was a possibility, but they are seeing some significant issues that could indicate that and thankfully it isn't the case. However, his tongue isn't working right, the swallowing is a huge problem, he is seeing double and with black spots and his left arm and hand are weaker than the right.

These symptoms mean major physical and speech therapy will be started. They are actually going to do shock therapy somewhere on his mouth to try to get him swallowing better. And worst of all, they need him to have more than IV fluid, so a feeding tube was inserted today. We'll be in ICU a little bit longer after all.

So back to a "break"...there are many factors that are causing all these symptoms. Fortunately, most of the extra fluid is removed from his brain, but now there is significant swelling just from the mere fact that the brain was operated on for so long. Also, the trauma of touching the brain stem could be causing many of these symptoms. Dr. K. also explained that when he opened Gary up the top of the spinal column was almost "sucked" around the tumor. He said to imagine the tumor was a golf ball stuck deep in the mud. He had to pull it out without damaging any of the mud around the ball. However, the mud was still disturbed and stretched and irritated when the ball came out.

This evening we saw a very subdued Gary. He suddenly had to admit that he isn't getting over this any time soon. He had somehow thought that it might be possible for him to improve so quickly that he could go to Alyssa's "Ballet Under the Stars" on Sat (which was never really a possibility), but he announced to her that "I guess I can't go to the ballet". She always knew he couldn't and she cried quite a bit to think he was working so hard with that as one of his goals. He isn't giving up though. He used every therapy machine he has already been given, right before he went to bed and he was fretting that the breathing treatment specialist was late with his treatment. He continues to be kind to his nurses and us and is usually always ready for a conversation. We spent a lot of time tonight talking about what we were thankful for....mostly that he's alive and that's really all that matters.

We appreciate your prayers and visits so much. Many of you have asked about meals and a care calendar for food and yardwork will eventually be set up, but we really won't need that until Gary gets home. While he is at the hospital, we will spend most of our time there. One of the biggest things you can help us with now is a quick visit to Gary, or both of us would be thrilled for you to come surprise Alyssa occasionally with a lunch (I might tag along:-) ), a movie, a quick swim (I'll have to know so I can hide a bathing suit) or just a visit and walk around the hospital. She is 100% determined to be at the hospital every day, but Gary and I both think she needs some breaks. Ballet Under the Stars at the Zilker park hillside theater is this weekend, so she'll have something special to do.

Thanks again for your prayers.
Kay