Saturday 11/6, 11:50 PM - Day 25
Today was a bit more relaxed, most of the therapy sessions were done in a group format. A new speech therapist saw Gina and we were amazed at how well Gina answered a multitude of questions about her pre-stroke activities, lifestyle, work, etc. A very encouraging session as Gina seems to have most memories intact. The proper term for her word finding difficulties is aphasia. The analogy I make for this is that everyone has experienced being in the middle of a statement and struggled to find a certain word (that "it's on the tip of my tongue" feeling). Well imagine having that about once every sentence or two. You know there is a word that fits the thought but can't find it. It must be extremely frustrating. Hopefully the connections that have been damaged here will be reformed with time.
After dinner with the kids in the cafeteria, a good friend took them to a U.C. basketball game while Gina and I watched about 45 minutes of TV (I watched, she listened/snoozed). It was almost like a regular Saturday night as we found a little couch and TV in an empty therapy room. Ironically, when I turned the TV on, some show called "Blind Date" was just starting. Go figure.
Significant milestones today- Gina made two very long walks (several hundred feet) and wrapped up the second one by going down a flight of stairs.
Sunday 11/7, 10:00 PM - Day 26
Today was pretty mellow- recovering from last week and preparing for next week. We had a few friends stop by to see how Gina would do with visitors and it really helped to pass the time. If you want to stop by and visit, it looks like weekends will work out best as she is exhausted during the week. We will see how things work out this week but I'm thinking next Saturday/Sunday 1-4 would be a good visitation time (I want to avoid visitations while she is eating as she is still working on swallowing and it is distracting to have other people in the room). I'll let everyone know after the surgery.
Monday 11/8, 9:45 PM - Day 27
Trying to hang in there for the last few days before hopefully regaining Gina's vision. She continues to wake up more each day and with that comes a greater realization of what has happened and what it means for the future. The psychologist explained it is almost catch-22... the more she wakes up, the more depressed she becomes even though the depression is a good sign because it means she is comprehending things more. It makes it tough for her to see that she is steadily improving. When she was looking very down at one point, I asked what she was thinking about and she said (or tried to say as some words would not come to her) that she was sick of doing all these sessions, talking to people she can't see, and basically existing in an environment that she can't even imagine what it looks like.
Significant milestones today- Gina was upgraded to thin liquids (she was really sick of the thick grape juice and milk diet). She will be tested tomorrow for being upgraded to non-minced (i.e. normal) food as well. I also had Gina try writing my name and she had no problems doing so (even without vision)- a very good sign!
Tuesday 11/9, 9:45 PM - Day 28
Ironic that Gina is scheduled for surgery yet again tomorrow at 11:30, almost 4 weeks to the hour since the original craniotomy. As four long weeks since the original bleed draws to a close, we are ever thankful of how far she has come and pray that the operation goes well tomorrow. At 7:00 tonight, Dr. Bruns informed us that a test done to make sure Gina's blood is clotting quickly enough showed that she is at the borderline for safely doing the operation. We are still scheduled for tomorrow but it will be up to the anesthesiologist and ophthalmologist to decide. We are anxious to have the surgery done but only if it is safe to proceed. We probably will not know until tomorrow morning.
Wednesday 11/10, 5:30 PM - Day 29
After an hour and 15 minute vitrectomy, Dr. Foster came into the waiting room all smiles. The surgery went well! It took a bit longer than expected (seems operations always take longer on Gina) because of the amount of blood in her eye. She also had two small retinal tears that needed to be repaired but the prognosis is good. If all goes well, she might be able to see large letters on an eye chart tomorrow morning. It will take several days to a few weeks for her eye to really recover from the surgery but any sight tomorrow will be a great breakthrough. I take her in at 7:00 AM and will try to post an update during the day tomorrow.
Thursday 11/11, 9:30 AM - Day 30
Went to have the eye patch removed at 7:00 this morning and... SHE CAN SEE! Even better, she can read! She has 20/100 vision right now but that should steadily improve over the next week. She can read fairly large letters- the fact that she can read (and understand it) is one less thing for us to worry about. I expected her to really brighten up but she really just took it all in stride, probably because I was ecstatic enough for the both of us. I'm having fun re-introducing her to all the people here at Drake now that she can see them. It was great watching her eat her own breakfast for a change. I think this is all too overwhelming for her to take in all at once though.
One other thing I neglected to mention last night- While in the surgery pre-op area, Dr. Willison (hopefully spelled correctly) took a few minutes out of her surgery schedule to come in and see us. Dr. Willison is the neursurgeon who read Gina's CT scan at 2:30 in the morning (at her home) the night of the bleed. After seeing Gina at 7:00 that morning 4 weeks ago, she personally called Dr. Tomsick and Dr. Tew and arranged for them to oversee Gina's case. It surprised me how overwhelming it was to finally introduce her to Gina. Even though she was only on the case for about 30 minutes, we might not be here today without her actions. If you are reading this Dr. Willison, thanks again!
Thursday 11/11, 11:15 PM - Day 30
What an incredible day this has been- second only (or perhaps equal) to the "Great Awakening" exactly two weeks ago. As I mentioned in the update this morning, after getting the patch off and getting back to Drake, Gina seemed better but not as uplifted as I'd expected. Actually Gina has pretty much been in a state of "just existing" ever since she awoke two weeks ago. We would see an occasional smile and a mild attempt at humor but she was (to use the therapist's words), emotionally flat. Today that all changed.
After getting back to Drake we started going through the usual therapy sessions. In her swallowing class she was promoted to regular food and officially graduated. Just before lunch I was asking some Outburst Junior questions to her to work on word finding and noticed that she was doing much better than she has been over the past several days. Just after lunch some family members visited and she seemed more alive and like the old Gina than we have seen since she woke up. Several early afternoon sessions also went very well and it seemed that she was literally waking up more and more with each passing hour. At her 3:30 speech session came the realization that something significant happened over the course of the day. Her cognitive abilities were greatly improved- she was answering very thought challenging questions at a level that nearly floored her speech therapist. Keep in mind that a week ago she could not name two green vegetables. Today she was answering paragraph long thought questions.
After that session things just kept getting better. The old Gina personality just turned on in a matter of hours. By 5:00 she was talking to us (up to this point she rarely initiated anything). She was joking about her hair, tidying up and organizing the room, and basically being Gina, and I mean the one-and-only real Gina. She was talking about things that we had planned just before the aneurysm as if it were just yesterday, recalling more details than I probably could right now. Her voice became stronger, sounding much more like herself. The difference was so great that she called the kids to say HI and when Kim (a very good friend) answered the phone, she did not recognize it as Gina's voice (having been use to the weak voice she has been talking in).
When asked what has been going on in her head for the past few weeks, she explained that she knew what was going on around her but just "didn't care". It may be that she was really unable to do much processing of what was happening around her and it seemed to her like she just "didn't care". I'm not sure if getting her sight back triggered something or exactly what happened but it was like she went from running at 50-60% to around 90-95%, and it seems to be much more than just not being depressed as her cognitive ability seems so much better. I told her it's like I just picked her up at the airport after a month long trip. The change over today was as great as all the previous days since the awakening put together, and I honestly finally feel like Gina is back.
Even before today her progress has been pretty remarkable and based on that they moved her release date up to 11/19. After talking with her doctor about today (she saw her late in the day), that date may get moved up even further! I'm trying to not get ahead of myself with this but aside from some aphasia (that she is doing better with), it seems like another miracle occurred today.
One final note- the kind nurse who helped us before/after surgery yesterday called to see how Gina was doing. It was a very kind thing to do and she left a very touching note in the guest book. She marked it private so I won't include it here but she did say that in her 12 years of nursing, she has never called a family at home to inquire about their status- Thanks KH for thinking of us.
Friday 11/12, 11:30 PM - Day 31
I woke this morning and laid there for over an hour trying to digest what happened yesterday. I had wrote in the entry last night that Gina seemed to jump to about a 98% level. I was fearful this morning that I overestimated the level so I changed the entry this morning to read "90-95%". After today I realize I should have left it at 98%.
In a memory exercise Gina did better than the therapist or me (the therapist says she was not trying to let Gina win and I know I wasn't). Her physical therapist was struggling to come up with exercises to challenge her and I can't remember the last time we used the wheelchair. Of course none of that quantifies the personality that has just flickered on over the past 48 hours. She has a clear memory of events up to about 60 seconds before passing out a month ago. The next thing she remembers is "moving from somewhere in the hospital to another room" (the move from ICU two weeks ago yesterday). She also remembers a few fragments of things that happened toward the end of the ICU days (such as her brother and a friend from California being there). Based on all this, I am hopeful we will have another release date upgrade come Monday.
To celebrate all this, we had our first "date night" in a month. I rented a movie from Blockbuster, my schedulers arranged for the kids to stay overnight with friends, and the staff allowed me to stay extra late (till 10:00). After a semi-romantic dinner in our semi-private room, I went to the cafeteria and got some popcorn and a Coke for Gina (her standard movie watching snacks). We shuffled the furniture in the Physical Rehab room, borrowed a TV/VCR cart, and then sat down and watched our first movie in a month.
Saturday 11/13, 11:00 PM - Day 32
Today was a pretty calm day with just a limited number of therapy sessions. A few visitors stopped by in the afternoon and some friends from work (my boss and his wife) brought dinner to the hospital for us and chatted with us. Today marked one calendar month since the aneurysm and I don't think anyone would have dreamed we would be sitting around a table tonight talking with friends. After everyone left we snagged the TV/VCR and watched "One Fine Day" (an appropriately titled movie) with the kids. If we could just sneak into the aquatic therapy pool and get some better food, we could almost pretend we were at the Holiday Inn ;-)
Sunday 11/14, 8:00 PM - Day 33
I think cabin fever is starting to set in. For some reason Kyle was in an extra-hyper mood tonight at the hospital and was driving me crazy. He wasn't being bad, just very wound up in a very small space. I told Gina that I'd give her the keys and she could bring them home and I would stay at the hospital.
Had several visitors during the day to help pass the time. For some reason we were both very tired. Hopefully our sentence, I mean stay, at Drake will be reduced tomorrow.
A sister of one of our friends left a note in the guest book that she has a friend whose mother just suffered an aneurysm in Hawaii. The collective Davidson network wishes her the best. Hopefully these pages will offer hope of the miracles that can happen. The best advice I can give is to take things one day at a time and never give up. You are in our prayers.
Monday 11/15, 9:45 PM - Day 34
Looks like we will be checking out of the Drake Resort on Wednesday! She has pretty much completed all the physical therapy activities they have- it is up to her if she wants to go tomorrow to physical therapy. Some of the remaining things they want to work on before releasing her are, of all things, shopping and cooking! She had to plan a meal today and make a shopping list (she picked breakfast). We are going on a field trip tomorrow morning to Kroger to see how she does with locating items, handling crowds (but how many people will be there at 8:00AM!?!), and interacting with non-therapist types. I think she will do fine. Wednesday morning she is going to cook breakfast for us.
At first I thought this almost seemed silly but the concern is that cooking several items at once requires multi-tasking and there is a safety factor involved. They just want to make sure she is safe. I have not told them that she couldn't cook before the aneurysm (just kidding Gina ;-).
In any case, the countdown is finally on and the kids can not wait (nor can I). Seeing other patients who came from University at about the same time as us but are going to be at Drake until early to mid December is a sobering reminder of how thankful we need to be.
Tuesday 11/16, 10:00 PM - Day 35
Finally Homecoming Eve has arrived. The kids and I (more I than kids) have been trying to restore order to the house for the past week. Amazing what that one little 5'2" person (Gina) does to keep our house running. The kids made a bunch of Welcome Home items and I think we are pretty much set.
We went Krogering this morning and Gina did not have any problems, she was even trying to pick out the best deal on items (but having a hard time seeing the prices). The goal for tomorrow is to burn, err- I mean make, breakfast. After that we have one more speech therapy and then we are released!
It is unbelievable how much has happened in the past 5 weeks (it will be 5 weeks at 12:30 tonight). The doctors and therapists continue to be truly amazed at how she has recovered. It looks like we will have 4-6 weeks of outpatient speech therapy, twice a week, to work on her remaining aphasia. I see subtle but daily improvement in her cognitive abilities and would say she is at 98+%. She still mixes words up but it has not even been a week since the final circuits turned on (last Thursday).
So as we near closure of this chapter, I thank God and all of you again for the support, food, gifts, kid sitting, etc. All this allowed me to be at Gina's side nearly all her waking hours and the therapists say this directly contributed to her rapid recovery.
Wednesday 11/17, 10:00 PM - Day 36
Everyone has been reading my words for the past 5 weeks- I figured a good way to start this entry off would be to have a guest writer- Gina! She actually typed the following in (with a king size font so she could see the words).
From Gina:
Hello to everyone. Thanks for all your thoughts and prayers. They came true!
More tomorrow...
So based on that you have probably figured out that we are home at last. I went through and did some stats on what she has been through over the past 5 weeks:
- 36 days spent at 3 different hospitals
- 16 days spent in the Neural Science ICU
- 1 5 hour craniotomy operation
- 1 6 hour Papaverine treatment operation
- 1 8 hour neural angioplasty operation
- 1 1.25 hour vitrectomy operation (for a total of 20.25 hours of operations)
- 3 Transcranial Doppler tests
- 4 Standard CT scans
- 4 Xenon CT scans
- 5 Neural angio/arteriograms
- 7 days on a respirator
- 350 (approximately) hourly neurological exams, the bulk of which required pain stimulation to invoke a response.
- 17 days of rehabilitation (about 50 hours of 'acute therapy')
- Removal of all of the hair on Gina's head
- Loss of most of the hair on my head (pulled while worrying ;-)
- And those were just the major things...
But it was all worthwhile to get to the point shown below.
Early discharge in time for Thanksgiving!
Homecoming!
The real homecoming was when the boys got home from school.
So we are finally at home and I'm going to quit messing with this page so I can go spend time with my wife ;-)
Thursday 11/18, 4:15 PM - Day 37
Last night was almost surreal- our house finally felt like HOME again. We watched Lion King with the kids, through a thin veil of smoke after I accidentally closed, rather than opened, the fireplace damper before starting a fire. Aside from the smoke detectors going off every few seconds and requiring a fan to blow the smoke out, it was a very quiet and relaxing evening.
This morning we went for the 1 week follow up on Gina's eyes. It went very well- she is at 20/30 vision in her left eye (by rough estimate using her current glasses and a pinhole mask) and still has 5 weeks of recovery time before her vision is "final" at which point she will get a new eyeglass prescription. Her right eye has cleared some, mostly around the periphery though so she still can't see anything out of it but this gives some hope that it might clear on its own. We go again on 12/13 and Dr. Foster will decide if he is going to do another vitrectomy on the right side (scheduled for 12/17 currently). She is off the dialation drops and that will hopefully let her see better in about a week.
We are awaiting our outpatient therapy schedule but it will be speech and occupational therapy, twice a week, for 4-6 weeks at Drake.
Saturday 11/20, 4:00 PM - Day 39
Now that Gina is home I will probably be updating this page just once or twice a week (I have better things to occupy my evening hours now ;-). We have our outpatient therapy scheduled at Drake now, 2 days a week for 2-3 hours a day starting this upcoming week (they want to keep the continuity with her inpatient therapy).
Thanks again to the many, many people who have sent messages via this page. I'm still reading them to Gina (we are up to about number 250). Gina still can't see well enough to read them online but she is going to re-read them all when she can.
Field trip to visit work.
Tuesday 11/23, 3:00 PM - Day 42
Yesterday we stopped by ITI, the place I work and where Gina use to work several years ago. A lot of hugs ensued and Gina enjoyed seeing many old friends again.
Had our first outpatient therapy session this morning- an hour long occupational therapy evaluation. As I suspected, they really do not have much they want to address. Gina passed most of the tests with flying colors. They are going to focus on some endurance building things along with general activities of daily living (ADLs). Tomorrow we go for our first speech therapy.
Sunday 11/28, 11:00 AM - Day 47
A belated Happy Thanksgiving to all... Our Thanksgiving was certainly happy! We had a full house of family over on Thanksgiving to celebrate Gina being home. We cooked the Turkey and others brought all the side dishes so that Gina would not feel compelled to try and cook. It was a long day for her and she was pretty tired on Friday but it was a Thanksgiving we will always remember.
Speech therapy is progressing well. Her new therapist said that based on her being so far ahead of the normal recovery schedule, she expects her to make a full recovery in 6-12 months. Gina's left eye has recovered from the surgery to the point where she can read normal sized type fairly well which will help with the therapy. At our Friday therapy, Gina was given about 2-3 hours of homework which she tried to plow through on Friday. The areas we are working on are list generation (e.g. name as many words as possible in 60 seconds that start with 's') and general word finding/thought articulation.
Wednesday 12/1, 9:45 PM - Day 50
Today is the 2 week anniversary of Gina coming home. Amazing how quickly time goes by now- I remember how each hour seemed to drag by in ICU. Gina graduated from occupational therapy yesterday- there really was nothing left for them to work on. I think Gina is still throwing them for a loop as people just are not suppose to be doing this well less than 4 weeks after coming out of a comatose state. Speech therapy is proving to be hard work- 2+ hours of homework from each session. I now have to get 2 kids plus 1 wife to get their homework done on time! The speech therapist thought we were nearing the end of the spontaneous recovery time (about 8 weeks) but she did not realize Gina was comatose for 2 weeks so as a result we still have 3+ weeks of spontaneous recovery time left (the time in which the brain is still recovering on its own).
Something new to look forwards to is going through a driver evaluation course after having the other eye operated on- Gina might be able to drive again within 2 or 3 months! The occupational therapist also noted that after a few more weeks of supervision, Gina can probably be left on her own for short periods (while I go to the store for example). We have a boatload of follow up doctor appointments next week- the key one will be with Dr. Tew.
Tuesday 12/7, 1:00 PM - Day 56
Today marks the 8 week anniversary of our ordeal. I can't believe how much has happened in the those 8 weeks. Many scary hours and many joyous moments of recovery. Sighs of relief as one by one, the myriad of things we take for granted each day came back to Gina. And today we squeaked one more milestone into the 8 weeks- completion of rehab! Yes, Gina graduated today from speech therapy and with that we said goodbye to the Drake Center. The therapist said she has progressed amazingly well and what impediments she still has (which are very minor) will come back over time. I am still seeing improvement each week (she is down to just a handful of misplaced words each day now).
Last Friday marked the first day she stayed awake the entire day. She still tires quickly but her endurance is definitely improving. After her endurance is up, I can honestly say she will be as good as (actually better than) she was pre-aneurysm. After having her other eye operated on (next Friday) she will be physically fit for driving. We need to go through a re-validation program at Drake for this (probably in February, after her eyes are done healing and her endurance/thinking speed is back up).
Tomorrow we see Dr. Tew for her 8 week follow-up... I'm going to show her the waiting rooms, ICU, and other things that will be forever etched in my mind as memories of this experience. I'll post the results of the follow-up tomorrow.
Dr. Tew on the right will forever be our hero
Wednesday 12/8, 9:00 PM - Day 57
Had our post-op followup with Dr. Tew today... He was very, very pleased with her progress. She was obviously the exception to the standard course for this type of thing as his assistant went and brought several other doctors (part of Dr. Tew's entourage and a doctor that is visiting from the Mayo Clinic) in to see her first hand. The best news is that he said from a neurological perspective, she is free to resume any activities she wants (as her endurance builds and as we have her remaining vision issues addressed). We were concerned about the risk of the aneurysm clips coming off but he said "they won't come off". So this went about as well as we could ever have hoped for.
While at University, I took Gina around and showed her the various waiting rooms, the ICU, and other places where I lived for 3 weeks. We stopped to see some of the great nurses in NSICU and they were thrilled to see Gina come strolling down the hall (last time they saw her 5 weeks ago she had to be roped to a chair just to be put in a sitting position). I think Gina was an inspiration to them that for all their hard work under difficult conditions, it can all pay off.
Next Monday we go to see the retinal surgeon again and decide about surgery on her right eye.
Monday 12/13, 8:00 PM - Day 63
All last week and this we have doctor appointments at least every other day... the appointment today was with the retinal surgeon. We had to wait almost 90 minutes before seeing him (tip- those 7:00 AM appointments are the way to go). Gina's left eye has healed very well, she is at 20/25 vision (using her old eyeglass prescription). As expected, her right eye has cleared very little. It might be months before it clears on its own (if ever). Based on this, we are going ahead with another vitrectomy this Friday. Her right eye has been bothering her more and more lately (imagine a big cloud right over the center of your eye with just a thin ring of slightly clearer vision around it). So once again we prepare for surgery, at least we are getting the routine down now. The patch will come off on Saturday morning and hopefully she will have some depth perception again.
Aside from that things continue to go well. Now that we are getting back to a routine, it is becoming more obvious that she has been changed by this. It is hard to quantify, and for the most part the changes are good. She is much less worried about trivial things (actually she does not seem to worry about hardly anything). She is not sure if this it is neural-physical or psychological but she says she feels 'different'. Although she has recovered better than we could have hoped for, things are different and we are all trying to get use to these changes.
Next doctor appointment is this Wednesday with the doctor that oversaw her rehabilitation.
Wednesday 12/15, 6:00 PM - Day 65
The followup visit with Gina's rehabilitation doctor went well. He did identify some residual effects in her fine motor control on the right side (not surprising as we have noticed that her handwriting is not nearly as neat as it use to be and her smile droops slightly on the right side). He is very happy with her progress but wants to have a "neuro-pysch" evaluation done before declaring her independent. I'm not sure what all is involved in this test but it consists of 2 - 2 hour sessions to be done the week of January 11. We also are setting up a driver's recertification in mid January. I had not really thought about it recently but her aphasia has continued to improve- she hardly ever mixes words up or has trouble finding a word now.
So it looks like I will be working from home a bit longer than expected (which is actually good- I'm getting a lot more done here than I do at the office). I'll report on her surgery Friday.
Friday 12/17, 4:00 PM - Day 67
Gina had her second vitrectomy today (on her right eye). This one went smoother than the first... only a minor retinal tear beside the vitreous replacement. Ironically, after all that Gina has been through, this was the first operation that she was apprehensive about. She says that her attitude before the first one was that she just did not care (or could not process things enough to care). This time she was understandably nervous and I was the one feeling pretty calm about things (after all the high risk operations, this one seemed pretty low risk). The nurses helped relax her and our nurse from the first operation stopped in to see how we were doing.
So this will hopefully be the last time we see an operating room for a very long time. We go to the Eye Institute tomorrow morning to have the patch removed.
Saturday 12/18, 11:00 AM - Day 68
Had our post-operative visit with the retinal surgeon this morning and things went well. Initial testing showed her at 20/40 vision (using a pinhole mask since her pupil is still maximally dilated). To speed the return of sight in the eye, we are going to try going without the medication that relaxes the eye muscles (which also results in her pupil being fully dilated). The downside is that she may start to experience some cramping and we will have to start the medication again. It (atropine) is powerful stuff- the drops applied yesterday will take almost two weeks to wear off. Until then things will be blurry on her right side.
She is really worn out from the activities yesterday, a rather sleepless night (her head has to be elevated on 3-4 pillows), and an early appointment today.
