New Website for Updates on Dad

Well, this is turning out to be a much, much longer process than any of us ever could have imagined. 3-6 months of recovery seems to be extremely, extremely optimistic, according to the drs.

Monday night, after he was moved to rehab and just hours after I wrote my last blog post, Dad got out of his hospital bed without any of his nurses knowing (there is an alarm on his bed that was supposed to be turned on and wasn't), and he fell and hit his HEAD, yes, the same head that was operated on just 2 weeks prior, that left a large gash over his left eye. He was sent back over to Baylor for a ct scan which determined he did not receive further injury from the fall, THANK GOD.

I am having a very, very tough time. I know so many mean so well by pointing out the positives of the situation to me. What it boils down to for me is that I was prepared for Dad to be in a 6-7 hour surgery and to be home by now, back to his old self, and what I have is a 53 year old father who is trapped inside a body that will not work for him. He is in a rehab center with 80 year old patients who can speak and walk better than he can. He is frustrated, he can't stop coughing, he can't get his damn spoon in his mouth, and he is scared. I know that people mean well when pointing out the positives in the situation to me, but it makes me feel defensive and upset, and I just can't deal with that right now. I know that someday, I will have the perspective that I need, but right now, I am pretty miserable and scared. And that is ok. I am not going to die from being upset and miserable. It's a tough, tough road, but what choice do I have? I am in the grieving process, grieving the change in my Dad, not putting together in my head that this is the same man I want to call and console me about the situation.

That being said, I have decided to stop updating on facebook, twitter, and this blog, and started a "caring bridge" website so that others can help me out with updating and can field comments and well-meaning messages. Also, this site has a "guest book" that you can sign that hopefully he can read later.

So if you were here to read about my Dad, please visit http://www.caringbridge.org/visit/bobdevine , and you can sign up for the email updates if you wish to stay on top of things.

Also, if you were someone giving me the positives, please do not be offended or hurt...I DO know the intent was pure of heart and meant in the best possible way. Many people my age have never been through this, and it's hard to know what to say, I know I would NEVER have. I just have to minimize the amount of stress I'm under and this is something that was stressing me out. That's just my personality.

Thank you all so much again for caring so much about my Dad. I will have more photography related posts very soon. I will leave this post with a few pictures of my girls. My Dad, the night before his surgery, was very entertained by my middle daughter's hula hooping skills (seriously, she's awesome!) and so I took these pictures of her to give to him in the hospital.


The sisters (Mikey was at basketball practice)

Back to Work, Again.

Update on Dad:
-He was finally moved out of ICU and today finally moved to the rehab center. I took Maddy to visit him today and could not get over how happy it made him. His face lit up the minute he saw her, and he was trying to tickle her and make her laugh by pretending to eat an unpeeled banana. It was the best spirits I've seen him in thus far. I also heard that he walked down the hall this morning (with some help of course). I think the more independence he gets back the better he will feel, and also the more visits with Grandkids the better. He adores those kids and they adore him.

So now that I think he may finally be out of the woods, I am forced to go back to work after a 4 month break. Between the surgery and my personal life, I can honestly say I am ready to do SOMETHING ELSE. My bank account agrees!!

So I really want to say thank you to everyone who has been here checking in on Dad for the past two weeks (has it only been two weeks? It feels like two years.) Although optimism is something I am incapable of right now, it does seem like he's going to be ok. It was just so good to see him smile and happy today.

I am still planning on teaching a small Devine U workshop. This is a workshop aimed at those who own a digital SLR and want to learn the basics of how to use it, learn more about lighting, and also some basic editing in Photoshop. It is $250 per person and we will meet on a Saturday afternoon, very casual and small. Please let me know if you are interested in signing up.

Spent hours tonight trying to return emails. Bear with me.

I am also currently accepting bookings for April and May. I will also be running an invitation only digital files sale soon, so watch your emails!

Again, thank you, thank you, thank you for allowing me more time for this situation with my Dad. Hopefully, we are past all the junk now (HEAR ME KNOCKING ON WOOD?!)

What We Need

Someone asked in a comment earlier what specifically they could pray for.

It's a great night to ask that question. Just when I think we're on an upswing, things get bad again. (thus the rollercoaster metaphor)

Dad is really alert now and really aware of his limitations. If you know him, you know he is a gentle man who never loses his temper and always has a smile on his face.

He DOES continue to improve physically. I can understand everything he says now, and he was putting his glasses on and off on his own. His movements become more coordinated and less jerky everyday. He is ready to move to the rehab center.

However, the insurance company has not approved this move. Because they did not approve it by the end of the day today (Friday), he will have to be in ICU for the weekend. What does this mean for him???

It means sleepless nights because nurses in ICU come in every 30 minutes. It means tons of uncomfortable wires and monitors (he rips out his IV twice a day). It means listening to the sickest of the sick cry and cough and moan across the hall, all the time. It means not being able to hug and kiss his grandkids, only waving at them through the window. It means crappy food. It means his wife sleeping in a chair for almost two weeks now. It means no social worker or staff psychologist to come and talk to us or to him about the emotions he is going through. It means no moving from the bed he is in to stretch his atrophied muscles. THIS. IS. AWFUL.

I am so angry for my father. I have very rarely seen him upset, but I can only imagine how he is feeling and I understand his emotions. He just wants to be able to wear his pants for crying out loud. He is convinced that he will never be normal again. I just want the idiots who are holding up the insurance to come into my father's room for 20 minutes, and watch him beg and plead to just go home. To explain to him why his body isn't doing what his brain tells it to. To watch him toss and turn and try to sleep for longer than 15 minutes at a time. I love my father, and this is torture on me, my brother, his wife, and all who love him. I honestly can't imagine anything worse than watching him suffer like this. It is quite literally my worst nightmare.

Pray for the insurance company to do the right thing, and QUICKLY. Pray for Dad and his sleep, state of mind, and his healing body. For my brother, who is seriously at the end of his rope. For me, as I am a completely useless mother to my children right now, as well as a useless daughter.

Rollercoaster

So yesterday morning I got a call from my Dad's wife Tamera that the results of Dad's MRI came back. Up until now the dr. had been relying on ctscans to determine the state of Dad's brain and to give the diagnosis of two strokes. They compared this MRI to the MRI he had before the surgery, and determined that there were NO STROKES!!!!!!!

Evidently the two spots on his brain that they thought were mild strokes were there before the surgery, and didn't cause him problems before so they shouldn't now. So the dr believes that these symptoms we are seeing now that are "stroke-like" are just the effects of major brain surgery that lasted 12 hours and caused much trauma. So now, it's just a matter of time, and he should be (crossing my fingers and holding my breath) back to normal!!!!

Other great news: the pathology came back on the tumor and it was the kind we wanted it to be (slow growing, benign)

And they should be moving him to the rehab center from ICU any day.

He also got 8 hours of sleep for the first time since extubation (he wasn't sleeping more than 15 minutes at a time) and I couldn't believe the difference, I could understand much of what he was trying to say and he just LOOKS more like my Dad (mannerisms, etc). I asked him if he wanted to watch basketball and he mumbled "I don't know what's going on anyway" which is very My Dad.

It's hard to get my hopes back up after such traumatic ups and downs in such a short period of time, but it does appear that we are back to where we started originally, and that is just recovering from the surgery!

Thank you all SO MUCH for your support, prayers, meals, gift cards, flowers, cards, and just general love for my father. He is a great man and I am so glad so many people know it :)

D

My Current Life, the way I know how to tell it.

(Me, taken by my sister in law)

Encouraging notes in the journal we are keeping for him

Shrine to the GrandKids

("smell my picture" because he used scented markers)

My vigilant brother, who is my rock, and has not left Dad's side.

These pictures were taken the first few days in the ICU. He is alert now and off the breathing tube. He is incredibly frustrated. He can't move his arms or legs the way he wants to, and can't get sentences out (he tries, but they are very, very slurred)

We think he will be moved to a regular hospital room and out of ICU soon, and then they will move him to a rehab center where he will begin a 3-6 month recovery of physical and occupational therapy.

I know I've scared some people with my late night descriptions of my state of mind. I'm doing better today. I took most of the day with my kids and we spent it outdoors in the gorgeous weather. I'm sort of angry and bitter too, I hate this for my Dad. He is so young and vibrant and I can only imagine how confused and frustrated he is right now. He thought he would be home today.

The prayers and good thoughts are so appreciated.

Sunday

too tired to give a full update tonight.

dad is frustrated. his mind is functioning fully but his body isn't anywhere near that. imagine being fully aware but unable to get it out. HATE IT

that being said he has made amazing progress. gtube was taken out today and he ate 3 cups of apple sauce, one with his own hand. the rehab techs came by and want to try and get him sitting up and possibly standing tomorrow. I cannot imagine this but am hopeful.

i'm not doing well. getting so stressed that I'm giving myself shakes and fevers. not sure what to do because to me being away from the hospital is not an option. this is just SO WRONG

want to thank everyone who has offered food and their support. special thanks to Mary for her help with my kids and Lori for the blockbuster gift card in my mailbox. incredibly, incredibly kind.

Saturday, the cliff notes.

10/15/09 at 1:16am
-Alert this morning and smiling big at stories about the grandkids and his delirious children walking to starbucks in the rain. smiled at the fact that we rented 3Amigos and The Jerk for him to watch. Shook his head yes when asked if his brother in law could visit. Also shook his head yes to listen to the Ticket (but not yet)

-Took pictures of him. Aside from letting me step away from the situation for a minute to be a documentarian, I want to have them to show him someday how far he has come.

-Dr checked him mid-day, so impressed with his progress that he decided to go ahead and extubate today instead of Monday.

-The extubation was really, really hard on him. Although I am sure he is more comfortable, it is taking all his strength to move his lungs on his own again. He was very agitated and uncomfortable. Because of the brain surgery, they cannot give him any pain meds or sleeping aides. Only Tylenol.

I feel so helpless. I am fine most of the day then by nighttime get to a point of not being able to take it anymore. I know he's coming back but i feel like I've lost my dad. Can't wrap my head around the mental image from just Tuesday morning, to now. Can't believe that is the same man. By the end of the day I am so emotionally exhausted that I have uncontrollable shaking. Luckily my brother is being the strong one of the two of us. He refuses to leave Dad's side and is spending the night with him tonight. Dad kept looking at me tonight like he wanted to tell me something. I couldn't figure it out. He still can't talk yet because he is so tired and his throat is sore from the intubation. This is so exhausting. Just love my Dad so much and want him to be ok.

It's like his progress is one step closer to normal, but then at some point during the day it kicks me in the face how far away from normal we actually are, when he was never sick before the surgery to begin with.

Not making any sense. Going to bed.

Friday (written by my sister in law)

UPDATE as of 3/13/09 at 9:15pm.

The doctor decided today to take Bob off of sedation meds and pain meds entirely. He still is intubated (has a tube down his throat helping him breathe). He has been off of the meds since this morning and there are only brief moments where his eyes open and he appears to recognize us. We are not supposed to attempt to engage him too much because his blood pressure and heart rate increase and this is not good. He is supposed to remain as calm as possible in order to heal. Over the next several days the accumulation of meds should start to dissipate and he will become more and more out of this drugged state. The doctor has said he will probably remain in ICU through the rest of next week and the total recovery time in rehab, both in and outpatient, will probably last 3 to 6 months.As I mentioned in a comment, he has suffered 2 strokes. One at the brain stem and one at the cerebelum. (sp?) The cerebelum controls balance and such but is extremely "forgiveable". We have yet to see the effects of the brain stem stroke, but the doctor feels as though he will cognitively be the same old Bob he was prior to the surgery.

Tim is something like a vigilant soldier and just wants to stand over him in case he opens his eyes and let him know he is okay. Deanna, along with her brother, walked to Starbucks in the rain and is now feeling sickly. Both of them want to be in the hospital all the time but are feeling the effects of that. Tim, I think, plans to spend every waking moment here during his Spring Break next week and especially over the next few days as hopefully Bob slowly comes back to us.

It is a rough patch, but I think, ultimately, we're going to come out on top. Again, thanks for reading.

(Deanna) thank you SO MUCH for all the love and support. My Dad is one of the most loved people, and for good reason. He is the best man I know.

Thursday.

Turns out Dad had two strokes, one of the cerebellum, the other is brain stem.

Today he showed much improvement, but only for his neurosurgeon and for Tim (my brother) and I. We think he just likes us more :)

They may try to extubate him tomorrow (Friday) but I'm doubtful.

He is still moving his extremities and seems much stronger than yesterday.

Tonight the nurse turned off his sedatives for about an hour so Tim and I could talk to him. Finally after half an hour of yelling in his ear to squeeze our hands, he fluttered open his eyes, and turned his head and looked at me, and I saw in his eyes that he recognized me. He then squeezed my brother's hand. That's about all we got out of him, but it's better than yesterday. So good to see him somewhat awake. I cannot wait to have him back.

Update

I am writing from a laptop in the hospital. here is an update on the past two days.

Yesterday morning we arrived at 5am and stayed with Dad until they took him for the surgery. He was in good spirits. I have a picture of him that I will cherish forever, smiling and giving us the thumbs up. We were all laughing and joking around and feeling positive.

 The surgery was supposed to last between 5 and 7 hours. They began at 8:30am. At 3pm we were getting restless and anxious, and asked for an update. At that point they told us it would be another 2 hours, but that everything was fine.

2 hours later, another update to check back in an hour because they had no idea how much longer it was going to be.

finally after a nervewracking 11.5 hours, we were informed that the surgery was over. A few minutes later, the doctor came to speak with all of us.

The doctor was very sober about the operation. The tumor had way more blood than they had anticipated. He went through 4 pints of blood during the surgery. It was nowhere near what they expected.  It was an extremely difficult operation.

 The biggest concern was that Dad had had a stroke during the surgery. As of last night, the dr's opinion was that there was a 50% chance that this had happened. 5 of the 6 quadrants of his brain had responded post-operation, so that was encouraging. 

 They then moved  him to ICU, where they decided to intubate and sedate him so that his brain could recover. We went home around midnight and were back at 5am this morning to meet the doctor.  At that point they had already done a catscan, and when the dr arrived he assessed that my Dad had indeed suffered a brain stem stroke.

 The good news was that the surgeon and nurses were able to get my dad to respond to their requests to squeeze their hand and move his legs, even though he was completely sedated. At the time he spoke to us, he was not moving his right leg at all, which indicated to the dr. that there had been some damage. However, the dr walked us over to Dad and asked us to talk to him. He responded to my voice by lifting his right arm over his head, and then again by finally moving his right leg. The dr, who has been very sober and cautious, turned to Dad's wife Tamera, grabbed her arm, and said "Oh my God, there is hope!" Was a huge relief.

 So today they kept him intubated and sedated all day, with the hope that his brain would rest and heal. We are currently waiting on the results of a second ctscan which will tell us if there has been any swelling in the brain. The goal is to extubate him and wake him up tomorrow.

 Obviously this was all completely unexpected, by myself, my family, and the surgeon. The surgeon indicated that Dad's tumor was something he had never seen before. We were completely shaken by the news of the stroke, and now expect some damage, however are hopeful that through physical therapy he will be able to make some recovery. The dr is saying that while there's little chance of FULL recovery, that he has a good chance for GOOD recovery. 

 All I care about is that my Daddy comes back to me mentally. I don't care if I have to cart him around in a wheelchair for the rest of his life or if he gets a cool "Dr. House" cane and has a limp...I just want him back to his old self. It is hard to be positive and hopeful at this point because with each step in this process, the unexpected has occurred. I will leave the positivity to all of you.

 If you are on facebook, I am updating as much as I can from my page (search for Deanna Devine-Silvestre and I will add you as soon as I can from my phone)

 I have had literally hundreds of emails, phone calls, and texts over the last 48 hours, and I truly truly appreciate everyone's support and prayers. It means everything to me. My Dad is so loved by many and I know that will get him through this.

 Please keep us in your prayers. Pray specifically that the dr will be able to extubate him tomorrow, that he will wake up and be himself, and for my brother, Dad's wife Tamera, and myself for strength so that we can get him through this.

The Big Day

I wanted to reach out to all of you for a moment, and ask you to please pray for my Dad this week.

The operation to remove his brain tumor is this Tuesday morning. He will be admitted at 5am, and they will begin the surgery around 7am. The surgery is expected to last around 6-7 hours. My brother and I as well as our support system of friends and family will be there at the hospital with him. After the surgery he will stay in the hospital for a week, then home recovering for another month.

I'm sort of a mess again and could use happy thoughts and prayers myself.

On that note I will be out of the office Tue-Friday to be with my Dad. Thank you so much for your patience and understanding.

Here is his picture with my kids so you can put a face with a name. I *heart* my Daddy so much and hate seeing him go through this.

One day left

One day left to take advantage of the Reprint Sale...this only happens once a year so be sure and get your orders in before the deadline! Mother's Day is just around the corner!