Dana's AVM Journey

Thank you...

noreply@blogger.com (Unknown) — Fri, 12 Apr 2013 21:12:00 +0000

I wanted to thank youall for your help. I've never been a fan of blogs, but I can understandnow how well they fit in certain applications in life. It's a littlebittersweet writing this last post b/c writing this blog helped me more than you'llever know.

Thanks to our family andfriends as well, there are so many letters, emails, phone calls, food, visits it'simpossible to list them all but you know who you are and you made a differencefor us. Thank you.

What did I learn overthe past months?

Family is priceless, by far the most valuable asset anyone could ever have, and it shames any material asset in the universe.
I now understand and can appreciate insurance co-pays and fee's. A lot better than the alternative.
You have to allow your friends to help you. I'm not someone who likes taking or accepting help but if there was ever a time we needed it, this was it.
Sleeping on a hospital floor or recliner is an awful idea and it's only a matter of time before the caretaker is worthless. For me, it was 4 nights.
Our medical field these days is absolutely amazing. It's insane what their knowledge and capabilities are.
Dogs are great, especially ours - Lana. She knew what was going on.....and I'm convinced dogs have a 6th sense.
Life can be cruel at times. There isn't any way around that aspect of it, however the combination of family, friends, faith and science worked for me.
Understanding what your up against helped tremendously, learn as much as you possibly can.
Do not run away from your battle. Run towards it --- It's not going anywhere. Take a deep breath and Tighten Up.

PS --- Dana, Iwanted to tell you, "Thank you". Thank you for being strongerthan I could ever be. You kept my head up when I needed it most. Ihaven't a clue what my body was running on during the initial stagesof all this...probably a mix between adrenaline, inspiration and love.

Regardless, you areincredible.

The Final Update

noreply@blogger.com (Unknown) — Fri, 12 Apr 2013 21:00:00 +0000

If you don't feel like reading this long blog post, this will sum it up = Dana is cured.

If you'd like know a little more information about all this then here you go!

Yesterday we had an MRI to get an update on how everything is coming along (I think we've become experts at the filling out paperwork, waiting, and waiting some more thing).

Once we had our MRI scans in hand we visited with Dr Deshmukh and his PA Dr Stamper and got some very good news.

The brain has continued to heal nicely. Some of the entry way they removed to get to the cavernoma has already healed up and the best news was there was still no sign of any residual cavernoma. Deshmukh was particularly happy about the amount of old stained brain matter they removed from the area. He estimated that around 95% of the stained brain had been cleaned thus increasing our chancing for no seizures down the road. He could see a that the right side of her head was still slightly swollen however that will come down eventually as well.

After getting the good news we started asking away if she could do this, or that. There was a long list and they were very patient with us (as always) and went over how much of this we could do and/or why we couldn't do any of that.

We have 6 more long weeks until she can do impact exercises like jogging but in the meantime she is allowed to exercise on the elliptical, stationary bike, swimming, etc.

The overall main threat to Dana now is general fatigue or getting over heated. If she gets too fatigued and over does something then it's possible her body could shut down (sort of like fainting), thus requiring her a day or two of rest to get her energy back. Her eyes will have bags under them and she'd really just feel exhausted. Deshmukh told us that younger people actually have a longer recovery time than older folks b/c younger folks usually over do things and then have set backs. Luckily for us that hasn't happened!

The overall main threat to Dana in the long run is seizures. Due to the fact that we operated on a part of the brain that is mainly associated with seizures there will always be a risk for seizures. However, because they removed a lot of the brain that was stained with blood (and thus having iron deposits in it) her risk of having a seizure is just as much as me having a seizure.

I love those odds.

In 6 weeks we have another follow up to check on how she is going and to remove all restrictions from her. That will be a terrific day sometime in mid-May and we can't wait.

After we left the Dr's office we had lunch at our favorite restaurant in Davidson, Flat Iron. For Dana she took advantage of one of the lifted restrictions right away by ordering a beer!

New Restrictions

noreply@blogger.com (Unknown) — Fri, 05 Apr 2013 14:12:00 +0000

Yesterday was 4 weeks after her 2nd surgery and she definitely made sure I remembered that as well as our Dr's. After not hearing from them by noon I had to call our Dr up, pleading for him to give me a call back so I could get her off my back!

A few hours later he gave us a call and we answered a lot of questions regarding her progress, any set-backs as well as what she's been doing day to day for the past week.

Based off the info we supplied him here is the plan for the next week until we visit him this Thursday =

She can watch TV, use her smartphone and be on the computer for 30 minutes at a time. She will become tired after using these but as long as she listens to her body and rest she'll be fine.
Obviously with the incorporation of watching video screens that will test her brain on whether or not it is good to go for not having seizures. She has never had a seizure and the med's we just precautionary but the temporal lobe area is a hot spot for seizure activity. After having surgery on it there is always a risk for inducing them. We will complete the use of the anti-seizure medicine this Monday so that will give us a few days of no med's + computer screens prior to the Dr visit on Thursday.
Slowly but surely she can incorporate more day to day activities and be more active over the next week (small chores, etc).
No driving until after next weeks check up.
Prior to the Thursday check up we will get a MRI with dye to see how everything has healed over the past month. This will give us and our Dr the peace of mind that we are all needing for him to say that she is close to being cured.
Due to her age, her good health and how she has taken time to not overdue anything these past few weeks he feels she may be excelling at this healing process. He is hopefully that we will be able to give her the label of "cured" at 6 weeks instead of the 8-12 week mark.
Exercise still isn't on the table though until two more weeks.

All this being said, we are on track for great things!!! I'll keep you posted on how this next week goes and who knows maybe Dana will jump on here to say a few things since she can do that these days. After next weeks visit on Thursday I think we will be able to safely shut the blog down and move on to normalcy.

Puzzles and fun

noreply@blogger.com (Unknown) — Sat, 30 Mar 2013 01:35:00 +0000

Dana finished her 1st puzzle tonight. We weren't sure if it would be too much for her but after a handful of days things are good and no setbacks.

Things are finally slowing down for us. The whirlwind seems to be behind us, although we realize we still have a ways to go til everyday living is a norm again.

At the end of this coming week we should have some restrictions lifted. We aren't sure what restrictions those will be but we know whatever they are well need to take it easy and ease back into things.

As you can see we've slowed down on the number of posts we have been sending out. Whenever we have news we will definitely broadcast it out however I know sometime soon we will most likely shut it down simply b/c Mrs Degan will be able to communicate with family/friends herself.

The following pic's:
Finishing her puzzle
Books on tape with Lana
Donut King (new place in town....not healthy)

Good Things

noreply@blogger.com (Unknown) — Wed, 27 Mar 2013 23:01:00 +0000

After receiving the green light for Dana to sleep in bed now we didn't know if she was going to have any spinal fluid issues moving forward or not. After two evenings of sleeping in bed, reasonably flat with a pillow I am please to say she hasn't had any spinal fluid leakage.

Whenever you hear the word "Leakage" it is just a bad thing right?!?!

Luckily for us, her spinal fluid seems to have stopped which means the scar tissue in the brain is doing what it is supposed to do.

Outside of that the week has been going great. Dana has enjoyed the company of her Sis, my Mom and a couple of terrific friends --- the Amanda's (Conley & Downs) - ((The Amanda's are awesome and I love them b/c they mean so much to Dana and as a plus their husbands are a lot of fun to hang out with)).

Here is a pic from this past week. Dana has been taking some water color painting lessons with Mom and as you can tell from some of the artwork she has put together her creative side looks to be just fine.

Lastly, tomorrow or Friday we should get a call from our Dr's looking for an update on Mrs Degan. They will of course be looking to learn how laying flat has been and start looking to next Thursday when we hit week 4 and some restrictions get to be lifted. I am very excited to see some of these restrictions get lifted HOWEVER I'm not excited about making sure Dana isn't overdoing anything.

Of the many things I've learned through all of Dana's recover process is how fun it will be dealing with our children.....They will be persistent, insanely energetic, bullheaded, frizzy haired and more so than anything else SASSY.

I can't wait.

Lil' Update for ya

noreply@blogger.com (Unknown) — Tue, 26 Mar 2013 00:38:00 +0000

Today we chatted with Dr Deshmukh regarding Dana's progress.

There were a few questions we wanted to ask and we got all the right answers.

We first ask when could Dana stop sleeping at a 45 degree angle in the recliner. Her neck is not feeling good from all that sleeping at an odd angle. Dr Deshmukh decided it was OK to transition back to sleeping in a bed. However if we experience any spinal fluid drainage increase then we have to move back to the recliner. The only catch is that Dana has to sleep on her back.....she love's sleeping on her side though so this should be interesting.

We get to start to taper off taking the anti-seizure med's so that is a great thing. No more odd dreams and weird naps. In two weeks, we'll be off of them completely.

Dr Deshmukh told me that everything inside the brain will take 4 weeks to recover. Once that 4 week time comes around and things inside are fully healed Dana will definitely feel a lot more energetic and spunky b/c her body won't be needing to divert all it's energy towards rebuilding that brain. He said it's kind of funny how it works...once 4 weeks rolls around bam.....lots of energy but we can't let her run wild just yet.

Once week 4 comes they'll be able to left some of her restrictions (not sure which will be lifted though) so that is exciting too.

All in all a great update and someone is extremely excited to lay in a bed with comfy sheets. I too know I'm looking forward to having her back as well.

Lastly Dr Deshmukh said that he wanted us to stick around CLT until we get to week six. He asked if we had any plans for Easter and if we did lets just say he said to not to do that. Traveling right now isn't a great idea, but soon it will be.

Board Games, Audio Books & Gossip

noreply@blogger.com (Unknown) — Fri, 22 Mar 2013 19:12:00 +0000

Board Games, Audio Books & Gossip are the three things Dana loves most these days. Mainly b/c those are the only things she's allowed to do outside of sleeping in a recliner and taking a stone throw's walk (it's too cold).

We started a game of Monopoly but I think we may have played a bit too much last night b/c her eye's were hurting a little so I think we overdid it. Outside of that, she has been doing great and things seem to be on the up and up.

Her girlfriends from WI went back home Wednesday. We both wished they would have stayed longer as they really spent the majority of their time with gossip, board games and laughter. Really helped her out I think, unfortunately time flew by way too quickly.

We are hoping that we'll be able to transition her back to a bed sooner than later. The recliner is great and all but it just doesn't compare to a comfy bed.

Our next appointment won't be until April 11th. Hopefully they'll give us some great news like she can get back to normalcy.

Time will tell, but if I were a betting man I'd put all my chips on Dana continuing to kick ass.

PS --- Thank you all for sending awesome gifts, treats and cards in the mail. Like I said, it's her favorite part of the day and really cheers her up when she gets to open up something --- it's like Christmas every day. The following picture is of her when I told her we couldn't hammer the entire cookie tin that the Thullin's sent her. She's just so sad b/c they are SO FLIPPING GOOD.

Sutures Be Gone!!!

noreply@blogger.com (Unknown) — Wed, 20 Mar 2013 23:10:00 +0000

This morning Dana and I headed into the Huntersville office of Carolina Neurosurgeon and Spine associates to have her sutures removed.

The procedure was a success and outside of a few stray hairs getting sacrificed all the sutures are now gone. The wound has healed nicely and every nurse/Dr we see always comments on how small and nice it looks (compared to others they've seen).

Our nurse told us that once we were done she was going to email Dr Deshmukh as she said he has been wanting to get an update on Mrs Degan. Even on his vacation Dana is still a priority which is a great feeling to have when your the patient.

Our next follow up won't be until April 11th and that will be 5 weeks from our 2nd surgery. During that check up we will hope to get the thumbs up on Dana being able to do normal/everyday chores/activities that she has always been able to do (especially the Lake Norman sale of Green Jeans...curious, investigate here: http://www.greenjeanssale.com/home/ ).

So, here are some awesome pic's of Dana. As you can see, she looks absolutely stunning. Hard to believe that just 2 weeks ago she just got done with 2 brain surgeries...crazy.

Lastly, I wanted you all to know that our door is open to visitors all day long. Now that she is feeling better and doesn't require as much sleep as before we can substitute that sleep with great company and gossip. If you can swing by for a visit, you'll be more than welcome to hang out and catch up with us --- just drop me a line or email me and we will hopefully see you soon.

Dana's New Brain Images

noreply@blogger.com (Unknown) — Tue, 19 Mar 2013 17:32:00 +0000

We got the copies of all the imaging work done during the process today and I put together a couple screen shots of what the before and after looked like...enjoy.

Oh yeah, tomorrow we get to remove her sutures finally (2 weeks) and she is doing amazing. The girls and Dad being here have helped out a lot and I don't know what I'll do without these guys to help wrangle her down from doing anything she isn't supposed to.

I'll figure it out....

1. Bleed event at the end of February, before surgery.

After 1st surgery - note the tunnel to the cavernoma, however you can still see a cavernoma is in there!

After 2nd surgery - you can see the tunnel and this time there is no cavernoma present.

Girl Time

noreply@blogger.com (Unknown) — Mon, 18 Mar 2013 01:11:00 +0000

The 2nd battalion of troops have arrived and all is well.

Seeing that Dana has been relegated to not doing anything except chatting, enjoying the outdoors via a walk or sleeping (at a minimum of a 45 degree angle) this couldn't have happened at a better time.

The girls arrived at the house yesterday and we enjoyed the day up at mom's. We took the pontoon out and explored a few coves and afterwards it was time for a nap. Today we spent all day outside since it was absolutely amazing --- light breeze, blue skies 70 degrees...amazing. We ended the night with an awesome dinner that the girls put together and the finale was Dana being able to play a board game (Rummikub).

This past Friday we learned from Dr Deshmukh that Dana was allowed to play board games. The only warning he gave us that she was not allowed to get upset if she was terrible at these games. He warned that she may be a little slow and if she got frustrated she needed to blame me (I'm still not sure how that happened).

Lastly, the spinal fluid hasn't increased anymore from what it was earlier in the week. This coming week we get to remove the sutures (on Wednesday) and if all goes well we are hoping she'll be allowed to sleep flat again.

Fingers are crossed...

Doing-A-Ok

noreply@blogger.com (Unknown) — Sat, 16 Mar 2013 04:29:00 +0000

Little update for you all.

Dana has been doing great and our little spinal fluid leak has toned down a bit after our Dr told us that she had to sleep between a 45-90 degree angle.

That sucks, plain and simple.

On the flip side of things the Dr orders did give me an excuse to buy a new recliner for the man cave.....

Unfortunately for me Dr's orders says she has to sleep at least 45 degrees for another 7 days.

Spirits are running high and having her mom around this week has been great. Because Rita has been helping out I've been able to catch up on work. Working from home is a bit hard to adjust to at first; however after the second/third day things came together.

Rita is flying home Sunday however the next battalion of troops are inbound from afar. My dad is coming in from Alaska and a couple of Dana's sweet friends are coming from Wisconsin. More help is a great thing and although each day is getting better for Dana I feel it may be getting harder on her personally.

Its hard for her to accept she needs to rest, cant do certain things, etc all day long even though she feels just fine. Although if she were to do those things she would quickly know that it was a bad idea. Slow and steady wins every time when it comes to the brain healing. Dr Deshmukh told her that if she does this first 4 weeks the right way she'll feel great and be on track for doing a lot of normal things in week 6. If she doesn't....6 weeks could be 8.... And that would really not be fun.

As you all can see she is doing great, can't even tell she had 2 brain surgeries!

The 2nd Surgery

noreply@blogger.com (Unknown) — Thu, 14 Mar 2013 13:42:00 +0000

Sorry this has taken a while to get to but I've been playing catch up for a while now. Here is what occurred for us to have a 2nd surgery for Dana.

During 1st Surgery

During the 1st surgery, Dr Deshmuhk entered Dana's brain from the right side of her head, just above the ear. The image to the left (hand drawn...sorry, not exactly a lot of images on Google that have what we were looking for) is of the right hemisphere of the brain but it's inverted (b/c that is how they do things). The incision is around 3 inches long, no hair was removed and they did not have to do a controlled break of her jaw in order to get access to the brain. After reaching the skull, a hole the size of a nickel was made and they entered the brain. After tunneling through the brain they reached the void that the cavernoma made. Upon entering this void, a large amount of very old blood came out. After that they could see the cavernoma but it didn't look like the raspberry...instead it looked like a carpet of blood vessels. He believes that the cavernoma popped during the Scotland event and that is why a bunch of blood vessels were lining the voided area like a carpet. He proceeded to remove the cavernoma/blood vessel carpet, remove the old blood and then cleaned the brain. Some of the brain was yellowed, that happens after the blood rests on the brain and the iron from the blood leaches into the brain. Iron isn't good for the brain as it promotes seizures, so we had to get that out of there.

After 2nd Surgery

Dr Deshmukh was pleased with what he saw in this cavity after the void was clean, he could see the water canal/column/ventricle (all the same thing) as well as the carotid artery. After inspecting the area, he did not see any more cavernoma on those two important pieces and that was very good we didn't have to touch those things. The ventricle is circled in blue and the artery is in red.

The next morning, we had to do a MRI/CT scan so he could triple check that the cavernoma had been removed fully.

After reviewing the imaging the cavernoma was still there in the area and he was shocked by this. The only explanation was that the cavernoma had split and grown behind the ventricle membrane at some point in her life. Based off of how large the cavernoma was there initially there was no need to break into the ventricle and explore in the brain...you just don't do exploratory surgery on the brain.

Dr Deshmukh explained to us in great detail what the situation was and gave us the option of going in a 2nd time or not. The reason we opted to do the surgery again was b/c this remaining portion could have bleed in a week, month, year down the road and we'd be in the same exact spot we were in a few weeks ago.

We were so close to giving Dana a cure for this that we did not want to walk away.

The risks were just as much as before (seizures, brain swelling) however because he had to go into the ventricle we were unsure how far he had to go in there to remove the cavernoma. Also, once breaking the membrane to get inside the ventricle was done, there was a risk for spinal fluid leaking excessively (little bit is fine, a lot not so much). Lastly, the carotid artery was in the general area too which is kind of a big deal.

After being told all of this and instantly being in shock we knew the right answer was yes, let's do it. As quickly as we said yes, Dr Deshmukh had everything ready and we were whisked away into the OR and in 45 minutes we were having brain surgery...the same exact position we were in the day before.

They went into the same exact way they did before, he opened up the ventricle and there it was. That cavernoma/son of a bitch was hiding behind the membrane and was quite large in size (almost as large as the portion that was in the voided area). After removing what he could see he saw that the cavernoma was wrapped around the carotid artery. This obviously isn't a good thing as this artery controls the left side of the body and any issues/complications from removing the cavernoma could result in paralysis....a catastrophic event. He also told us later he felt this artery had a fissure vessel supplying the cavernoma with blood, this alone was not a good thing and amazing not terrible happened before (aneurysm). If that wasn't enough, there was evidence of more blood touching the brain as the Hippocampus was yellowed with iron deposits as well as another portion of the brain (can't remember if it was the Amydgala or Medulla). He had to remove brain from these parts and that has it's own risks as well....short term memory, vision and personality. Those components will heal in full over time so anything we lost should come back eventually....minus the personality. An hour and a half later, Dr Deshmuhk spoke to me about the surgery and informed me of how much larger this cavernoma was. They underestimated it and unfortunately there was no way to tell this until going through the first procedure then doing imaging afterwards to see if they got it all. He told me that after the surgery he followed Dana to the recovery room and waited there with her until she woke. After doing so much in a sensitive location he had to make sure she was OK. She woke, he asked here some questions, she responded, before he could ask her to move her left arm she raised it...a sign of relief. If that wasn't enough, Dana apologized to him for having a cavernoma.....must have been the drugs right? Now it was time to make sure she was who she was still. I went into the ICU room with my stomach in a giant knot. I got to the doorway....she saw me and said, "Mark".

Dr's Orders

noreply@blogger.com (Unknown) — Tue, 12 Mar 2013 23:42:00 +0000

When we went to see Dr Deshmukh this afternoon (Dana, Cindy, Rita and I all went together) Rita asked the all important question of what she can and can't do.

Of the items that he went over he said he didn't want any use on the computer, TV or checking Facebook/email/text on her phone.

That being said, if anyone would like to send pic's, etc chances are she isn't going to be able to check it until several weeks from now. At the same time if you want to call her then call her phone and she can talk all day long; or at least until she wants a nap.

Soooo, we are putting away the computer and turning off the Facebook on her phone until we can get back into the swing of things (hopefully a couple weeks and not a month).

We know all of you want to reach out and keep in touch so that is where I can come in and help out! Any messages, notes, etc you want to send her way then please send to me and I will let her know right away. If you don't have my phone or email address here is my email = markdegan @ yahoo . com. Email me then I'll send you my phone number if you'd rather do that instead.

Yes, this sucks BUT it's temporary........and if you didn't know already Dana's favorite part of the day besides breakfast, lunch and dinner is checking the mailbox so a letter would be great too.

Thx for understanding and don't be offended if you send something her way (facebook, text, email, etc) and don't hear anything....she can't check it anymore.

A Sigh of Relief....

noreply@blogger.com (Unknown) — Tue, 12 Mar 2013 21:55:00 +0000

We just got back from Dr Deshmukh's office and are feeling better than we were earlier.

Here's the deal with everything from today.

There is a Spinal Fluid Leak.

However, as of today the leak isn't bad at all. If it was bad, it would be a stream of fluid coming out of her nose.

At the office Dr Deshmukh tried to induce this by tilting her head down for 5 minutes. Nothing.

We had a CT scan done at the hospital b/c CT scans are excellent for seeing fluids. After
reviewing the scans himself and with his peer's they were relieved. If there was a problem the
fluid would be seen in the skull just behind the ear. The bone in that area has a lot of air pockets
in it (insert joke here for being an airhead!) and the pockets were still all looking great and no
fluid was present. If the leak was bad then we'd see it in there for sure and there wouldn't be air
pockets.

Where is this fluid coming from?

Red circle = ventricle, Blue circle = Hippocampus

It's coming from where we had to enter the water canal (water ventricle) during the 2nd surgery in order to remove the cavernoma that split off and hid behind the water ventricles tissue surface (i know, more coming on the 2nd surgery process tonight I promise). They patched this with a sponge/foam plug; however fluid can still get out and once it passes through the tissue wall the pressure of the right temporal lobe will help keep it in place, after that the membrane that encapsulates the brain holds in fluid and finally your skull stops any fluid from leaching out. In our scenario the fluid is following the path of least resistance and that happens to be the route that they went in for the surgery. Once the brain heals though it will not drain anymore.

Is this fluid bad? It is and it isn't. The body produces around a pint of spinal fluid a day and it is used in the brain/spinal cord for a number of things --- it's very important and useful. The brain absorbs this fluid normally so the fact that it's in the brain cavity is just fine. It's only bad b/c if a fluid is finding it's way out of the brain and going into her nasal cavity and draining into the throat/nose then that means things can go into the brain --- specifically infections like meningitis....not good.

How to we fix this? If the leak stays the way it's leaking today then chances are the brain will heal itself via the scar tissue. This however takes days/weeks to heal and it may not heal quickly enough. If the leak starts to be more prevalent then we can fix it without doing an invasive brain surgery! We can fix it via an outpatient method where they go in the same route they went for the surgery. They go through the skin and the muscle in the jaw until they get to the bone around the back side of the ear. Once they get to the bone they cover the bone with beeswax?!?! This will seal the last line of defense (bone) for holding in fluids. There is a small risk for infection however like with anything it's minimal. This works very good b/c the bone is porous and not solid. Liquid can slowly/surely work it's way through it and if we seal the outside of it then it can retain/hold it in where it belongs and block other bad things from getting in.

We can minimize the amount of fluid as well if we have her sit in between a 45 and 90 degree angle over the next few days until scar tissue can form over. That means she is going to have to sleep in a recliner (we don't have one yet but I'm working on it). Dr Deshmukh will call us in the morning to get a report on how things are going and if the fluid is draining out quickly or not.

So as of right now it's not as bad as we thought initially. If it does increase, we can fix it without being too invasive. There are still risks but minimal when compared to where we were last week.

Thx for the thoughts and prayers so much - it does help so much. I'll try and put together a illustration on what Dr Deshmukh did on the 2nd surgery that they couldn't see/do the first time tonight.

Something or Nothing?

noreply@blogger.com (Unknown) — Tue, 12 Mar 2013 17:17:00 +0000

Here we are again, its a familiar feeling one that we can't seem to shake.

We are sitting in a waiting room to get a CT scan because of the numerous things Deshmukh told us to look out for we identified one and had to follow up with him to see if its serious or not.

We noticed a very thin liquid (like saline) coming from her nose from time to time. This could be from the water canal/ventricle that he had to go into in order to remove the cavernoma on the second surgery. They applied a coating so it wouldn't leak but there is a chance it didn't hold.

Now, we don't know anything yet ---- that is why we are getting the CT and taking to Deshmukh today.

We will keep you posted and hopefully its nothing.

Home bound

noreply@blogger.com (Unknown) — Sun, 10 Mar 2013 14:47:00 +0000

We are going home.

Discharge papers are getting written as I type this.

Yesterday was an interesting day needless to say. As Dana's body healed and got better my body crumbled after getting limited rest over the past few days and I was no use or entertainment for Dana. We decided I needed to get sleep (much different than rest) so I headed home for a great 8 hrs ciesta.

I got back this morning to learn that our hero Mrs Dana Degan had a very good night and after speaking to Dr Deshmukh and the PA we get to go home now. The plan is for her body to do its job and heal over the man made repairs and that should take three weeks. Once that is completed we are all set and we can slowly go back to normalcy.

We're very excited as you can imagine.

This has been quite a journey and although its not over yet we are close and I know she is going to be ok.

I want to thank our family for everything they've done for us. I should also include our friends in that same category because without family or friends this would have been much harder on us. You guys kept us up when we were down and righted our ship when we needed it most.

Thank you - we are forever grateful and eternally indebted to you all.

PS - I will work on the detailed overview on what exactly happened to make us have two surgeries --- for us its insanely interesting.

Looking up

noreply@blogger.com (Unknown) — Sat, 09 Mar 2013 15:06:00 +0000

Last night Dana had a good night of sleep. It could have been better but she got enough to say we are going in the right direction. It's hard sleeping when your not tired and when she does get up and walks around for a few minutes she quickly gets tired and is ready for sleep again.

This morning at 430 am Dr Deshmukh came by our room to see how we were doing. I asked him why he was there so early this morning and he replied, "had an emergency craniotomy". How did it go, everyone ok I asked? "Yup there all good". It's a bit sobering learning how often he goes inside someone's head to fix things....just unreal.

He reviewed her progress made since yesterday as we did some occupational/physical therapy tests and passed all those just fine. The stitches look great and are holding the he said that she was ok to take a shower and wash her hair - so very happy she was. We went over the game plan again as far as the healing process and he again said how important sleep, healing and laying low were. As long as we have a good day and no set backs occur today he hopes we will get to go home tomorrow. We're in no rush so if it happens great, if not that's ok.

It's hard realizing this woman just had two brain surgeries b/c she does look great once you see her.... but again the energy quickly gets sucked out of her but sleep charges up the batteries.

I plan on going over in greater detail what exactly happened and inform you all how complex this cavernoma was soon in a posting. It's a complete surprise how large and advanced it was but luckily Dr Deshmukh figured it out and removed all of it. There is nothing left to bleed in there b/c it doesn't exist anymore.

Our window of having issues is around three weeks. During this time, its critical that she continues to let everything heal nice and easy. He put her head back together again successfully, now we are waiting on the body healing over everything we poked and prodded.

We're not out of the woods yet but we are getting closer.

Want to visit?

noreply@blogger.com (Unknown) — Fri, 08 Mar 2013 19:09:00 +0000

Send me an email or text if you want to visit in the hospital and ill coordinate with you so we don't overlap other visitors and of course her all important sleep.

I'm a bit of a Nazi when it comes to this but sleep is incredibly important and we need as much of it as possible.

Once we get home she'll be in a bit better shape and visits will be a bit easier for everyone.

Breathing easily...

noreply@blogger.com (Unknown) — Fri, 08 Mar 2013 15:54:00 +0000

We just meet with our neurosurgeon and things are looking good.

I reviewed the imaging scans and things look much better and its now officially cleaned out with no remnants of cavernoma anymore. The void has been filled with spinal fluid which is just fine as its like the bodies own version of saline.

We got a little better understanding on why we didn't get it all the first time (more on this later).

Our neurosurgeon said that not all neurosurgeons do imaging after a surgery b/c they'll say "I saw it all when i was in there and were good". Luckily ours doesn't believe in that and always triple checks, and after doing so saw the cavernoma was still in there. They couldn't see it during the first operation b/c it split (like a tree into two trunks) and one half went behind the water canal wall and the other was in the brain.

There are still risks involved but they are minimal and we won't know --- we just have to have faith that all continues to hold/heal/recuperate (risks: seizures and/or fluid releasing in skull cavity).

He has been amazed by how strong Dana has been in all this. He reminds us all the time that she had benefited greatly for being healthy both physically and mentally and if she wasn't this wouldn't have gone the way it has so far.

How many people do you know who can have two brain surgeries in 24 hrs....I only know one, my badass wife.

Imaging Results this AM

noreply@blogger.com (Unknown) — Fri, 08 Mar 2013 12:32:00 +0000

We had our MRI and CT scans this morning at 5 am and shortly after Dana got back to the room our surgeon was able to review remotely and confirm that:

1) everything looks as it should
2) no ill regular anomalies
3) looked good so we can proceed with healing process

He'll be in late morning to chat with us about our gameplan and what we can expect to do next. We hope the surprises are behind us and if its one thing we've learned ---- don't let your guard down while in the hospital. Besides, your here for a reason - there is something wrong and you have to allow time and people you don't know fix those things.

I hope to send out more good news today...

Checking In....

noreply@blogger.com (Unknown) — Fri, 08 Mar 2013 04:13:00 +0000

Sorry the delay everyone.

I went down for count for a while today; needed some sleep and food. I'm back at with Dana and she is looking good. We wanted to keep interaction down today so she can get as much sleep as possible. Sleep is good for her now and tomorrow she should be feeling better.

Same plan of attack for tomorrow as we had today which includes CT and MRI scans early AM followed by the surgeon reviewing to make sure nothing is out of place.

If all looks good then we can proceed with healing and moving slowly....til tomorrow AM.

PS - thank you for your thoughts and prayers, it means so much.

Update

noreply@blogger.com (Unknown) — Thu, 07 Mar 2013 16:52:00 +0000

Dana is out of surgery and they want to make sure she has plenty of sleep so no visitors today and I've been ordered by the Dr to go home and get some rest (guess I don't look that great).

The 2nd operation revealed that the cavernoma was larger than we anticipated. It was not a bleeding cavernoma but a cavernoma nonetheless.

The surgery entailed going deeper in her brain in order to remove it and we had to enter the water canal, remove a little of the medulla and hippocampus. These will make her memory a little off however time will heal itself. Because we entered the water canal there is a chance water fluid could enter her brain cavity and we'd have to drain it.

The recovery to is substantially longer now as well because we went in farther. Instead of taking it easy for 4 weeks we are looking at 8 weeks.

Time will tell, rest, rest and more rest......

Unexpected challenges

noreply@blogger.com (Unknown) — Thu, 07 Mar 2013 14:42:00 +0000

Wasn't expecting this.

My gut never felt right yesterday, maybe I have a 6th sense after all....didn't allow myself to sleep too much and this morning when our neurosurgeon called to talk to me I knew... we needed to hit the reset button and go back in.

Shock is what I think Dana and I both were in and I'm ok with that because shock handles your emotions and emotions can handle you.

I feel like a gold medalist sprinter that gets told they stepped outside the lane the day after the awards ceremony - the perfect definition for getting punched in the gut.

We just got an update from the OR, and they are an hour in and they say things are going as planned.

Our character is being tested as we go through these obstacles. We aren't accepting anything else other than her healing 100%. Our character is built from our love for one another - it's everlasting and impenetrable to these obstacles. It's ok we'll get through this day.

Round 2

noreply@blogger.com (Unknown) — Thu, 07 Mar 2013 13:26:00 +0000

Sorry for having to do this but....

We had our MRI and CT scan this AM at 2:30-4am and our neurosurgeon reviewed the scans. I hate to say it but they were able to see a tiny remaining portion of cavernoma next to the main area they worked on.

They couldn't see it earlier b/c blood masks a lot of things and its a no no to do exploratory in the brain. It's important to realize this void isn't a perfect circle, more like an area with inset areas here and there. This particular portion we missed was covered by the brain and it is apart of the same one so its nothing new.

We are going back in for rd 2 now to remove this remaining portion to be safe should take 1.5 hrs, yes this sucks but we need to fix it - period.

It's going to be ok, Dana's got this she is incredibly strong and she knows what "tighten up" means to the greatest extent.

Sweet dreams

noreply@blogger.com (Unknown) — Thu, 07 Mar 2013 04:52:00 +0000

Things are going well tonight, she got a little nausea this evening but it was due to the med's.

1) no hair was shaved, the entry area was right where her hair naturally parts by the ear
2) we didn't have to do a controlled break of the jaw to gain access so that is great news
3) Diet is normal foods
4) Nephews Carson and Kipton ate lending their stuffed animals so she can sleep better...