Last picture taken 4 days before her aneurysm ruptured. For the next two weeks I did not take any pictures of Gina because I was afraid they would be my last ones. I did not want to remember this nightmare although in hindsight I wish I had taken pictures to show her what we experienced while she was in the NICU.
Notes scribbled while the initial neurologist explained the situation
Wednesday 10/13, 12:30 AM - Day 1
Gina and I were in bed and had just finished watching a show on TV. Gina sat up and said she had a terrible headache. Over the next 10 minutes she became dizzy and sick. I'll spare the details as these 10 minutes were the most horrifying of my life and I pray that none of you ever have to go through it. Within 10 minutes of sitting up, Gina appeared to have a seizure and I called 911.
Wednesday 10/13, 12:45 AM - Day 1
The ambulance came within 5 minutes. Gina was unresponsive and we went to Bethesda North hospital. Thankfully, the kids did not wake up through this.
Wednesday 10/13, 1:15 AM - Day 1
The ER doctors order an immediate CT scan and the results are sent to the chief neurologist's house by modem. The CT scan shows that she suffered an aneurysm at the base of the brain. An aneurysm is basically a weak spot or defect in an artery and in this case it ruptured spilling blood around her brain. The blood leaks until the pressure around the brain is equal to her blood pressure. The brain does not like this pressure and basically shuts down.
Wednesday 10/13, 2:00 AM - Day 1
Gina is somewhat stabilized, and responds to some vocal commands. The neurologist orders an angiogram for 7:00. We spend the rest of the night in ICU keeping a careful watch on Gina.
Wednesday 10/13, 7:00 AM - Day 1
The chief neurologist comes in and looks at the CT scan images. The angiogram will show the details of the aneurysm and based on that the next step is to either use a fairly new technique where small coils are run through the angiogram tube up to the rupture point or the traditional approach of going in through the side of the skull and clipping the rupture with a small metal clip to seal it. She decides that our best option is at UC hospital (they are the only ones that do the coil approach). Time is of the essence as we can not let it rerupture. She personally calls two doctors at UC (Dr. Tew, the head of the neurology department and Dr. Tomsick the expert at coiling) (one for each approach). Both are recognized as some of the best in their fields. Fortunately both are actually at the hospital (they both are frequently out of town).
Angiogram showing the rupture
Wednesday 10/13, 9:30 AM - Day 1
We arrive at UC hospital and Gina is taken for the angiogram within 15 minutes.
Wednesday 10/13, 11:50 AM - Day 1
Dr. Tew meets with me to discuss the angiogram results. Due to the location and size, the coiling approach is not an option. The only option is to do the pervasive external surgery which I authorize. They basically make an opening on the side of the skull, lift the brain, and place clips across the aneurysm. Gina is immediately taken to the OR for the operation.
Wednesday 10/13, 4:45 PM - Day 1
Dr. Tew comes into the surgical waiting room and tells us that after some difficulties they were able to clip the rupture. It re-ruptured as soon as they got in and due to the nature of the rupture they had a difficult time clipping it. The assistants were still closing so it would be a while before she was in recovery. During the surgery they had to temporarily stop the blood flow to the left side of her brain 3 times for 6 minutes each time (10 minutes is the max they can go).
Wednesday 10/13, 8:00 PM - Day 1
I'm allowed to go see her in the neurology intensive care unit (UC is one of the few hospitals that has an intensive care unit just for neurology patients- by the grace of God, Gina got the 8th of the 8 beds they have and two more aneurysms came in the same day (both unfortunately had to be redirected to other facilities). Given the difficulty of the surgery, I would not have wanted to be anywhere else. Gina is able to squeeze a finger with her left hand but that is about the only response at this point.
Wednesday 10/13, 10:00 PM - Day 1
Gina is moving a little more and able to move her toes on command. She can't open her eyes or do anything else but at least she is in there and still with us. It is impossible to put into words how overwhelming the past 24 hours have been.
A poster we made to have in the room to help Gina remember our family
Thursday 10/14, 6:30 AM - Day 2
Gina is a bit more responsive and can flicker her eyes open for a second or two. Dr. Tew is pleased with her progress.
Thursday 10/14, 10:00 AM - Day 2
A doppler test is done to determine if Gina is having vasospasms. These are a side effect of blood being outside the brain. The arteries react to this by actually constricting which if severe enough can lead to stroke. This is our next big hurdle as it can be just as damaging as the aneurysm. They treat spasms by increasing her blood pressure (without the aneurysm being clipped, the increased blood pressure would likely have caused a rerupture). The results come back that she is having mild to moderate spasms. The critical period for the spasms is the 10 days after the aneurysm. The impact is measured by her neurological response which has so far been very good (being able to squeeze a hand, etc.)
Thursday 10/14, 3:45 PM - Day 2
Gina has continued to become more responsive during the day, opening her eyes briefly and even trying to talk. The real breakthrough came at 3:45 though... she was able to wake up enough to be conscious of her surroundings and recognize my mother, uncle, and me. She was able to actually carry on a broken conversation for a few minutes (she was very very groggy and kept trying to drift off).
Thursday 10/14, 5:30 PM - Day 2
Had another good visit with Gina, she was able to wake up again and talk for a bit (still in a very groggy state and not really thinking much- just kind of hearing the words and saying a few things). Still, this is excellent progress and it is just incredible to see her eyes and hear her voice (faintly) again! They take her for a CT scan at 6:00.
Thursday 10/14, 7:30 PM - Day 2
Gina does not wake up much during this visitation, she is so exhausted from the CT scan and the previous sessions. The doctors wake her each hour to do a set of neurological response tests to make sure the spasms are under control. The good news is Dr. Tew called with the CT scan results and they show the blood around the brain has decreased significantly- a very good sign. He is very pleased with her progress.
Pillow made by Ryan's class
Friday 10/15, 7:15 AM - Day 3
I talked with Gina's nurse and she said that Gina had a good night.
Friday 10/15, 11:30 PM - Day 3
The end of a very long day... 3 days down so far, 7 to go to the magic 10 days (when the vasospasm risk diminishes). Gina was not as awake today as yesterday. At noon, they did a doppler test which is essentially an ultrasound probe aimed through various thin spots on the skull. This is done to measure the velocity of blood in several key arteries. The faster the flow, the more constricted the vessel (which means vasospasms). The doppler test results were not good- rated moderate to severe vs mild to moderate yesterday. This combined with the increased lethargy, caused much concern. A xenon CT scan was done to determine how much blood is making it to the brain and that too did not read very well. Based on this, they decided to do an angiogram (which accurately shows the level of vasospasms) and based on those results, try to lessen the spasms with a medication injected through the angio tube or by inflating a small balloon and physically dialating the vessels from the inside.
This was devastating news to us all. In order to more accurately monitor her, they had to put yet more probes and catheters in. Fortunately, we were being looked over again because once they did the angiogram, they were surprised to find that the vasospasms were not as bad as feared. They held off on the treatment because the treatment can cause other complications.
I know I had started to feel a bit more relaxed after having gotten through the clipping procedure. No more- I now clearly understand that the battle is not over. The vasospasms are a major hurdle that she must work through. We will not be in recovery mode until they subside. We ask you to please keep her in your prayers and thoughts to get through these next 7 days.
Card from Ryan
Saturday 10/16, 10:50 PM - Day 4
Overall, today was a much better day than yesterday. It started off with Gina being taken down for another xenon CT scan. This time though they put her on anesthesia so that she could not move (they suspect that she moved during yesterdays scan and that caused artifacts in the results- the radiologist said this scan is 100 times more sensitive to movement than an MRI). Apparently Gina's body soaks up morphine and some other drug as they had to give her fairly heavy doses. But the results were worth it- the scan showed good blood coverage to the brain. The big fear with vasospasms is getting adequate blood to the brain.
At least partially because of the drugs, Gina was pretty much out of it the rest of the day. She was unable to say a single word to me the entire day (a first since this started). This deepening lethargy has me concerned but the doctors feel that as long as the brain is getting adequate blood we are on top of the battle. She is still dealing with the swelling which can have the lethargy effect as well. We are now entering the traditional high risk period for vasospasms so please continue to pray for her. One family in the waiting room managed to get through day 8 before the vasospasms began. They were giving this lady the Pavarin (sp?) treatment via the angio tube tonight.
Gina also started a slight temperature today and they took cultures to determine if there is an infection someplace. However, they did not seem to feel that is a major issue at this point.
On the good side, she is still following commands. It appears she is just very worn out and unable to wake up. I pray that tomorrow she will be more alert and perhaps even have a decrease in the spasms and swelling.
Lastly, I heard today that Father Jim's dad passed away. Father Jim is a priest at St. Michaels and came down to the hospital on Wednesday. Our condolences go out to Father Jim and his family.
Our friends and family stepped in and basically took over the day to day operation of our family - I don't know what I would have done without them
Sunday 10/17, 9:30 AM - Day 5
Checked in this morning and there has not been any change. Gina is still very lethargic but is passing the neurological tests (which is the key indicator of the spasms causing problems). I did not talk to the doctors but they did see her this morning and are satisfied with things enough that they are pulling the angio sheath out (they left it in Friday in case they needed to do another angio yesterday). As of right now Marc, the current nurse, is unaware of any scheduled dopplers or CT scans.
Everyone handles this type of brain trauma differently so the doctors can not predict when she will start to be more awake. The key thing is the blood flow which is hanging in there right now.
Sunday 10/17, 6:00 PM - Day 5
I only saw Gina for the first three visitation periods today (10:30, 12:30, and 2:30). I felt terrible missing the 5:30 and 7:30 ones but she was sleeping so deeply that I thought it would be a good time to catch up on the myriad of day to day things that I totally stopped doing. They removed the angio sheath because we are praying that it won't be needed again. Her temperature continues to fluctuate but her intra cranial pressure (ICP) readings have dropped really well (a level of less than 20 is their target, sustained 50+ is cause for major concern- Gina's was 25-30 yesterday and down to 5-10 today!). They have her blood pressure at about 175/90 (to help with the vasospasms).
Like yesterday, I was unable to get a vocal response or even a hand squeeze out of her today but the nurse assured me that she continues to pass the neuro tests. This is the point of maximal swelling and that can have this sleepiness effect. We continue to take it one day at a time.
Monday 10/18, 9:00 AM - Day 6
Talked with Gina's nurse and there has been no changes. She continues to sleep deeply, but comfortably.
Monday 10/18, 10:25 PM - Day 6
Another day on the rollercoaster... the 10:30 and 12:30 visitations were pretty much like the past two days- no responses, just very deep sleep. For the past few days I have been having the kids record messages for Gina that I play back to her. Even when she is unresponsive I am sure she can hear these... you can see more face and eye movement and an occasional, ever so faint, nod of her head. Last Friday she was doing well enough that she recorded a few sentences for the boys which made their day. Since she has gone into this deep sleep pattern she has not been able to record new messages.
The 2:30 visitation (actually done at 3:30, they were changing her bandages at 2:30) was an unexpected surprise- she was noticeably more awake. It is amazing how several hand squeezes, a few flickering glimpses of her eyes and clear head nods can bring tears to your eyes. No words can describe the overwhelming relief of knowing Gina is in there. The 5:30 and 7:30 visitations were similar- she was noticeably more responsive than she has been since Friday evening.
That is the upside news... the downside news is that Dr. Tew is concerned about the vasospasms again. She is going to have another doppler done tomorrow morning. This will be a critical test. The glimmer of hope here is that Dr. Tew was basing this information on the early morning rounds, before she was a bit more awake.
Please say an extra prayer that this doppler test shows the spasms lessening and that Gina continues to become more awake tomorrow.
Card from Kyle
Tuesday 10/19, 7:00 AM - Day 7
No significant change overnight. Her temperature continues to spike to around 102 and they are giving her Tylenol to control it. They took blood cultures several days ago and those should be back today (I think)- that will tell them what antibiotic to use.
It is going to be a long day- the doctors have ordered a doppler, xenon CT scan, and angiogram. Please pray for good results.
Tuesday 10/19, 9:30 PM - Day 7
By the time I got to the hospital (9:00), they had already done the xenon CT scan. They moved all the neuroscience ICU patients from the 4th to the 5th floor today so after some minor chaos, I finally found the new NSICU (for those who come to the hospital, the new waiting room is just down the hall from the elevators- it is marked "Surgical Step-Down Waiting Room" or something like that).
The scan confirmed what we all feared- not enough blood getting to the left side of the brain due to vasospasms. She was taken for an angiogram with the intent of doing the Paparvine treatment. Paparvine has the short term (6-12 hours) effect of dilating the vessels suffering from vasospasms. It is administered through the angio catheter directly into the spasming vessels. Fortunately Gina took the drug well- it does not help some people and/or raises their cranial pressures too high. A follow up angiogram confirmed better blood flow. All of this took from 7:00 to 4:00.
We had a conference with Dr. Tew around 6:15 to discuss next steps. He feels the Paparvine is going to be a short term bandaid. Our options are another Paparvine treatment tomorrow and/or angioplasty (a small balloon inserted through the angio catheter and repeatedly expanded inside the vessels to physically enlarge them). It will all hinge on how Gina does on the neuro exam in the morning. He did say that he feels we are at the apex of the spasms... he said 2 more days and we might be able to breath easier.
They have to put her on a respirator during these xenon scans and angiograms. Since they are planning on more tomorrow, they left her on the respirator which means they must keep her sedated. This was disappointing because we know that she is getting better blood flow and would quite probably be more awake *but* they have to keep her sedated due to the respirator.
Her angiogram starts at 7:15 tomorrow morning- please be praying and thinking about her. Best case scenario would be for the vasospasms to have not returned and not need any further treatment.
Angiogram before the angioplasty - you can see the pinched main artery and (faintly) the external staples
Wednesday 10/20, 10:00 PM - Day 8
I thought yesterday was a long day... it was like a trip to the doctors office compared to today. Gina was scheduled for an angiogram this morning at 7:15. I called the hospital at 7:00 to see how she did overnight and found out she pulled the pressure monitoring probe out (by accident) so before the angiogram could be done they had to put a new probe in (it actually goes inside the membrane that surrounds the brain). I arrived at 8:00 and they were just taking her down for the angio. About 9:30 Dr. Tomsick came out to give us some very disturbing news- the spasms had returned and were so critical that he wanted to immediately start an angioplasty. He had conferred with Dr. Tew and they both felt without it, Gina would likely have a stroke.
This was the procedure we had been praying to avoid but we had to put our faith in Dr. Tomsick and approve the procedure. It was unclear how long it would take- they knew it was going to be very delicate working the angio catheter past the aneurysm site to expand the vessels on the far side of the clips Dr. Tew installed a (very long) week ago. Around 11:30 Dr. Tew did a status check and informed us things were going well but they were having difficulty getting past the aneurysm.
Angiogram after the angioplasty - you can see the section that was enlarged via angioplasty and interference from the clips on the aneurysm
The next official update (we had a few smatterings of information from nurses and technicians) came at 6:00. Dr. Tomsick came out and wearily told us that he was able to open the vessels up. He showed us the before and after angiogram- in the before you could see the carotid artery come up and branch with the aneurysm clips just off on one branch. A little before the branch the artery clearly constricted from 1/4" wide (on the film) to a very thin pencil line thus cutting most of the blood off to that side of Gina's brain. The after picture was startling- the constricted areas looked just like the unconstricted areas in the before shot. I honestly think Dr. Tomsick was amazed that they (with some help from someone upstairs) had been able to do this. He made a statement that they were working with vessels .08 to .1 inch in diameter from 3 feet away (via the catheter) and seeing it all through an x-ray.
Many family members came down to help us get through this very risky and trying ordeal- our special thanks go out to them.
The next step was to do a CT scan and pray that no damage had been done either by the surgery or by the constricted vessels. Dr. Tew read the scan and informed us that it "looks good". He also made the comment that Dr. Tomsick had performed a miracle today (no small words coming from Dr. Tew and none of us were disagreeing). It is both doctors hope and opinion that this will be a more permanent fix for the vasospasms. The next step is to do another CT scan and/or angio in the morning. We saw her briefly after the surgery, her nurse said that she had opened her eyes on her own! (a first since this ordeal started).
I can not say enough about these two doctors- without both of them we would never had made it this far. They are completely dedicated to giving the absolute most of themselves to their patients.
So as we come up on the end of day 8 since the original bleed, I ask once again that you keep Gina in your prayers- hopefully she will come off the respirator tomorrow and we will have a better idea of where things stand.
Thursday 10/21, 11:30 AM - Day 9
This morning Gina was more awake than she has been for the last week or so. The doctors were satisfied with the neurological test, but they still plan on doing a doppler test this afternoon and a xenon test tomorrow morning. The visit this morning (8:30) was very encouraging, but she was not as awake during the 10:30 visit. Pray and hope the xeon test tomorrow morning provides positive results.
Thursday 10/21, 10:00 PM - Day 9
Today did not turn out to be the day we had hoped for... Gina is still on the respirator (in preparation for the xenon scan and possible angio tomorrow). While there is much we could be despondent about, we are trying to focus on the positives- Gina was more responsive today, although very weak on her right side. Responsive means she could squeeze a hand or wiggle toes under command and nods faintly when spoken to. They are keeping her sedated because of the respirator tube which must be incredibly uncomfortable. Our biggest concern is to make sure that the vasospasms have not returned. She will have a xenon CT scan at 7:00 AM tomorrow. Depending on the results, they may want to do an angiogram and possibly repeat the Papaverine treatment and/or the angioplasty.
Gina has endured so much- I lost track of how many hours in surgery and undergoing various angio operations. Hopefully the scan tomorrow will go well and it will be her last so we can get that horrible tube out of her throat. She has been on that respirator since Monday and I have grown to despise the machine. When they let the sedative wear off to do a neuro test, she becomes agitated and tries to cough. Of course the respirator tube has her throat blocked- imagine trying to cough with someone's hand over your nose and mouth.
On the upside, Dr. Tew talked with us and is hopeful that she will be better tomorrow. He seems very focused on just getting past that 10 day milestone (we will have put 9 (horrible) days since the bleed behind us as of 12:30 tonight and 6:00 PM tomorrow will mark 9 days post-op).
I've noticed that these "quick" updates are getting longer and longer. I miss Gina very dearly and I think this is my way of keeping everyone praying and thinking of her. It has been a week since I heard her speak. I know I ask this every night, but please do keep praying for her. We want her to come back home soon.
Friday 10/22, 9:00 AM - Day 10
The results of the xenon CT scan were positive meaning she is getting adequate blood flow to the brain. In addition, her neurlogical response has improved slightly. Therefore, no additional test beyond the hourly neurlogical response test will be performed. She will remain on the respirator. Please continue to pray for her.
Friday 10/22, 8:10 PM - Day 10
Finally- an up day! After the xenon scan, they decided to pull the angio sheath which meant increasing her sedative so that she would not move her leg and cause the sheath opening to bleed. At 2:20, Dr. Swartz came down to the waiting room and asked us to come out in the hall. First response was dread but I could see that he was smiling and excited. As we walked down to Gina's room, he explained that they had let the sedative wear off so they could get a more accurate neuro exam. We walked into her room and she was very responsive. But the real amazement came when she opened her eyes- on her own!
This was the first time in the past 10 horrible days that she opened her eyes on her own (the day after surgery she would open them a little under command). But you could see much more behind the eyes- she was focusing and tracking people in the room. Her brother had arrived from Germany last night and he was there. She looked at him and I swear you could see her scrunch her eyebrows trying to figure out why he was standing there looking at her. She did the same thing when she saw a friend from California.
I'm pretty sure she mouthed my name when I asked her if she knew who I was. Of course she had the respirator tube in so she could not say anything. I can't imagine what disconnected thoughts she was trying to piece together from all of this. She looked around the room several times. Altogether she had her eyes open for several minutes (not at once).
The doctors were very pleased with this progress. If she continues to do well on the neuro tests, they may take her off the respirator tomorrow. We are praying that the vasospasms have subsided (they are still present but hopefully lessening). One of the doctors commented that she has been the most difficult case they have seen in many months.
Our concern for tomorrow is to see if she progresses enough to come off the respirator. That will allow use to get a feel for her communication skills. The concern is that the CT scans are showing she has suffered some degree of stroke in the language area of her brain. The extent of the damage is not known yet. Hopefully we will have a better idea tomorrow.
Saturday 10/23, 8:30 AM - Day 11
We passed a milestone last night at 12:30 AM- 10 days behind us since the original bleed. Gina's nurse this morning said she had a good night. She continues to respond well to commands and was even opening her eyes (not sure if voluntary or under command) and looking around the room. It does not sound like they are going to take her off the respirator today but I have not spoken to a doctor yet this morning.
Saturday 10/23, 9:15 PM - Day 11
A day of many milestones- all good! At 6:00 PM we finished day 10 since the original clipping operation. Overshadowing that though was the progress that Gina made today. Dr. Tew decided to take her off the respirator (no more tube in the throat!) and she was off by 5:30 PM. He also had her taken off the sedatives.
The fantastic news is how alert and awake she is. She looks around the room and at us, hears us, and answers with nods and shakes. She can move all extremities and is processing things. For example, her sister told her that she had to bring her 4 kids and that they were downstairs with her mom- Gina's mouth dropped open and the facial expression clearly said "you've got to be kidding". We had many examples like this today that give us more confidence that it is our old Gina inside that noggin. She does not say anything yet (and does not try to even mouth words although one time she did mouth her name for me). That may be due to her throat being sore from the respirator. The concern here is that the CT scans shows she did suffer some level of stroke during this ordeal and it is near the language center of her brain so we are unsure of what that will mean. But we remain hopeful that after a day or two she will be talking our ears off. I think the most touching moment for me though came when I said good night and was walking out of the room- she waved and smiled at me! I have been waiting 10 days for that and it still gets me to think about it.
So finally, after 10 days of not knowing what the next hour would bring, we can start to breath just a little easier. Every time I look at her I think about what a miracle it is that she has come this far. Thanks to these messages and your messages back, I feel like we have all been in this together. We continue to thank all those who have prayed for us and helped us get this far!
Sunday 10/24, 9:00 PM - Day 12
I'm starting to breathe easier... We had many good signs today. Gina was fairly awake for all the sessions except the 10:30 one (they had her sedated while they removed 36 staples from her incision- it is mostly behind the hairline so it should not even be visible).
I've done a lot of thinking about what makes a person who they are. (Those who know me will say "what a Keith thing to do" ;-) It seems to include the basics (motor control of limbs, etc), memories, ability to process inputs and respond to them, and personality/emotions. I've started observing Gina to see how she is doing on these things.
Motor control is outstanding- she wiggles around in the bed, pulls her gown down (on both sides) when things are getting a bit embarrassing, and has most recently started picking at her incision. All very good signs.
Memories seem to be pretty good at this point- she obviously recognizes us and nods yes to various names I have thrown at her.
Processing seems good except she is having a hard time speaking. She did say a few things today ("I really can't" when asked to read the front of a get well card, "I love you"- my personal favorite since it was directed at me, and her first name). She is very responsive to yes/no questions by nodding/shaking her head but just does not seem inclined to talk. A new thing today was to start pointing at things (wanting to say "what's that").
Today I saw some hints of the old Gina's personality. A friend mentioned that someone had walked in the living room and messed up Gina's nice neat sweeper marks in the carpeting (those who know Gina understand this). Gina immediately opened her mouth in a look of "what!!!" and then smirked, clearly understanding the comment. We saw a number of moderate smiles too.
So in summary, another very good day. The nurses can not believe the improvement over the past 48 hours. I wish I could be there when the doctors make their rounds tomorrow morning. Good as all this is, we still have a lot of hurdles to overcome. As all the doctors/nurses keep pointing out, this is not the kind of thing you just go home from and return to normal life. The recovery process is long (a nurse said think about improvements between weeks, not days) and we have not started talking about rehabilitation yet (what type/amount will depend on how Gina continues to progress). But we will cross those bridges when we get there. For now we continue to be thankful that we are where we are. Just scrolling down in these updates brings back painful memories of the obstacles Gina has overcome.
Monday 10/25, 9:00 AM - Day 13
Gina had a good night. The doctors are pleased with things and are backing down the meds to keep her blood pressure/heart rate up (yeah!). The also have clamped the cranial drain and she is keeping a "high normal" pressure. This is a key step as once they remove the drain, she will be allowed to sit up. They may even pull that later today.
Monday 10/25, 10:00 PM - Day 13
My good friend Mark saw this coming- I think I got a bit overly excited by the relief of (hopefully) getting past the highest risk portion of this. Tonight reality sort of caught up to us (and came crashing down on me). The rate of improvement we saw over the weekend is simply not sustainable. Just as they tried to warn us about the vasospasms, they have been trying to warn us about just how long and difficult of a process the waking up and healing is. They keep saying "think in weeks, not days". It is still way too early to know where we stand in terms of rehabilitation needs. At times it really seems like Gina is in there and just not able to speak, at others she seems much more distant. I'm not drawing any conclusions yet as things are still "booting up" after the trauma of the first 10 days. A therapist saw her today and said it was too early to really get started on anything.
From a clinical perspective, today was pretty good- she is no longer on any meds for increased blood pressure and they pulled the "Swan" (a tube that was run into her heart for careful monitoring of her vitals and injection of medicines). They did not take out the cranial drain as they had to relieve some spinal fluid pressure today. But we are down to just one IV rack now and I can count the tube/wire connections on two hands. From a neuro perspective, Gina was more lethargic and distant today. The nurses say her awareness level goes up and down so maybe we had just been getting lucky for the past few visits.
I am trying to readjust my expectations and gather my wits for what I know will be a long and trying rehabilitation period. The most difficult aspect of this is that this is the type of thing where you really need your spouse to help you get through the low spots.
Tuesday 10/26, 11:45 PM - Day 14
It is late so I will make this brief- Today was pretty similar to yesterday. Gina continues to sleep much of the time. We do continue to see good signs and if you add all the signs up that we have seen over the past several days, it gives me high hopes that Gina will be able to recover from this fairly well given time. Dr. Tew is satisfied with her progress. A CT scan is scheduled for tomorrow and if that goes well, they will take the cranial drain out. That leaves us hopefully just a few days away from leaving the ICU to a step-down room.
In just 45 minutes we will pass the 14 day milestone. It is amazing but I am already "forgetting" what life use to be like. This is probably good as our entire family will need to come to grips with a number of changes as we move into the rehabilitation phase.
Wednesday 10/27, 10:45 PM - Day 15
After a few so-so days, we finally had a major up day. I arrived at the hospital at my usual time to find the rehab therapist just finishing an evaluation. She and Gina's nurse where both pretty excited- Gina had swallowed apple sauce, said her first name, and most incredibly- stood up for a bit (with what they termed "25% assistance"). We had been worried about her ability to eat in a controlled manner. Knowing she stood pretty much on her own relieves a lot of other worries. My 10:30 visit was cut short by an unexpected opening in the CT scanner schedule so they took her down early for that.
The CT scan results came back "good" and as a result, they removed the cranial drain that was allowing excess spinal fluid to be drained. Yeah! One less tube. Actually she is down to just a small food tube (which she yanked out last night and had to be replaced) and that standard hospital IV line that anyone who comes in the door gets. At one point she had such a rats nest of color coded tubes and connections that I was ready to draw a schematic. I know she had 9 IV bags going at once along with her cranial drain, catheter, and a big wiring harness. Now that they are not pumping gallons of fluids into her to keep her blood volume up, she looks like Gina again, albeit with a Demi Moore buzz haircut.
We figured she would be in a deep sleep after all the morning activities but she was moderately awake at the 12:30 visit. By 2:30 though she was tuckered out and deeply sleeping. Our best visit came at 5:30. We walked in the room and she had her eyes open- the very first time she had her eyes open when we arrived! Our old Gina seemed very much alive and well in there during this visit. She lightly smiled several times, clearly understood when we were joking, and even tried writing (she knew the concept of holding a pen but we will need to work on the making letters part- she seemed almost surprised when she tried to write but her hand just made squiggles).
We have a better idea of next steps now... Assuming she continues to do well tomorrow, she may be moved from NSICU to a step-down room on Friday or Saturday. If she does well there for a few days, we may be ready to officially enter rehab mode. We are hoping to get into the Drake rehab center (working through insurance approval now) where Gina will be for 4 weeks (maybe less, maybe more depending on her progress). If all goes well, we may move to Drake sometime next week.
Thursday 10/28, 11:50 PM - Day 16
In 3 weeks we have seen 3 miracles. The miracle for the first week was Dr. Tew successfully completing the difficult 5 hour cranionomy to clip the aneurysm. The miracle for the second week was Dr. Tomsick's 8 hour marathon angioplasty to treat severe vasospasms. The miracle this week was Gina coming back to us. This is a long entry- so much happened today that it is unbelievable!
I arrived this morning to find Gina sitting up in a chair with her eyes open. The physical therapists had been working with her and she was supposed to say "Hi" when I walked in but she forgot to. No big deal- just seeing her sitting was almost overwhelming. I thought that would be the higlight of the day but that was just the warmup.
After a pretty emotional reunion of just being able to hug my wife for the first time in 16 days, her mom and brother came in and we went through the moment again. The nurse came in and happily announced that we were being kicked out of NSICU in about 4 hours. This was a big surprise but she said Gina was doing too well to stay in NSICU (no arguments from us).
We let Gina take a brief nap and then found out that we were supposed to keep her awake to try and get her back on a night/day schedule. Gina stayed awake pretty much until the big move at around 1:30. She was even starting to say a few words (she told me she had mashed bananas that morning and said "Oh My God" when she felt around on her head and realized something was missing).
The big move consisted of moving down to the 4th floor to a "step down" room. It is actually pretty nice- it use to be a two bed room but only has one bed in it now plus lots of room. The his/her TVs are a nice artifact of the previous two bed setup- I could learn to like this room. After getting situated we showed Gina a number of get well cards (thanks to all those who sent them- I've been saving them until Gina was more awake). During this Gina was becoming more and more awake/aware and saying a few more words here and there. After discussing it with her social worker and getting permission, we decided today would be the day to let the kids see Mom.
We figured Gina could take a nap while Gina's mom and brother went to get the kids. No sooner had they left than the physical therapists showed up. They asked Gina if she felt like walking and with closed eyes she nodded yes. After some embarrassing flashes out the window (hopefully no one was in the stairwell across from her window- have to hate those backless hospital gowns), we had her up and she took a brief and slightly shaky stroll down the hall (about 60 feet round trip). The true Gina showed through when we got back to the bed and she sat down and said "I'm sorry I could not go further". Yep, that is Gina.
The kids seeing mom for the first time in two weeks
She had all of a 10 minute snooze when the boys arrived. They were so excited that they were shaking. After a few reminders about a new hairdo and the tubes, we had our tearful grand reunion. Pictures speak better than words here (click the picture for an enlargement)...
It was perfect timing because Gina's brother Mike had to leave right after the reunion for the airport to head back to Germany. Throughout this, Gina was talking more and more and in more complete sentences. It seemed like the day could not get better at this point but then we discovered the magic voice therapy device- the telephone. Gina must have some brain lobe dedicated to the device- and that lobe is in perfect working order. Her friend Kim's birthday was today (Kim is one of the many people who have put their life on hold to help with our kids). I could not think of a better present than for Gina to say "Happy Birthday" to her. I called another dear friend, Robin, to get Kim's number and when Robin asked how Gina was doing I just gave the phone to Gina.
Gina took the phone and just started talking. Her voice was just a bit shaky/weak and she missed a few words but they actually carried on a conversation for several minutes! Listening to that conversation and watching her facial expressions was unbelievable. It was like we had come to the hospital for a minor operation or something- you would never had guessed she had brain surgery a mere two weeks ago! We finally got in touch with Kim and gave her a gift she will not forget. Mark H. also called to see how she was doing and I let Gina give him the status report directly (so those at ITI can talk to Mark to get a first hand report). He was almost speechless at having talked with her directly. About this time Dr. Tew came in (while Gina was on the phone) and was visibly surprised. He made a statement that "God must have some plans for her to progress like this".
And so ends the day that we have been waiting 16 long days for... There is no doubt that we have Gina back. She still has some memory gaps and is having a hard time seeing things clearly but we can work through that. Next step is the Drake Center for rehab. We head there on Monday (insurance approved everything). Her rehab doctor stopped by and was amazed at the progress since yesterday morning. She said that with a lot of family participation, we may even be able to reduce the rehab period.
It is truly unbelievable the progress Gina has made in the past 24 hours, not to mention the past 7 days. I know there are many who would like to visit or call but please hold off just a bit longer. She still has controlled visitation and they do not want to overwhelm her. Once we get to the Drake Center visitation will be easier.
At the close of this great day, I ask for one more prayer, one that I will be saying many times tonight and that is simply "Thank You".
Friday 10/29, 9:45 PM - Day 17
Even though we are still recovering from yesterday, today had its share of up moments. Gina was able to walk unaided to the bathroom, wash her face, and then return to her bed. She had some solid food today- a bit of mashed potatoes and some less identifiable "puree of brown stuff". The kids saw her again and spent about an hour talking to her.
She still tires very, very easily and is having a lot of vision difficulties. The optometrist saw her this morning and said she has Tersons syndrome which as I understand is basically blood in the eye fluid. This will hopefully rectify itself over time (there is an operative procedure that may be needed if not). Based on her behavior today, I think her eyes are of little to no help for doing things and that is going to make the rehab more challenging but hey, we are used to challenges at this point! Memory, reading, writing, and cognitive skills will all need rehabilitation. Basic motor control is good but we have a lot of physical rehab in front of us also. Still, we are thankful for just being here to face these challenges!
Saturday 10/30, 10:40 PM - Day 18
It was a beautiful day here in Cincinnati... about 77 degrees. Figuring this might be the last nice day for a while and knowing that fall is Gina's favorite season, I got permission to load her up in a wheelchair and take her out into the hospital courtyard. We spent about 90 minutes outside before her IV ran out and we had to go in. We took her out again after dinner while the kids were there.
Her other accomplishment today was to walk to the sink and brush her teeth. She was also just a little more awake (still wanting to sleep a lot). Unfortunately her vision is still causing problems- it is so bad that she does not even try to look at her food while eating. She just stares ahead and feels around for things. We are praying this is temporary.
Sunday 10/31, 10:00 PM - Day 19
Gina continues to be a bit more awake each day. Each day since Thursday I have asked her what 2+2 is and how to spell CAT and she was unable to get either one. Today she did both (and also 3+6). A seemingly small step but to me a very important one as it shows things are still coming back on-line.
We move to Drake tomorrow to formally start rehab. I am anxious to get into this because I will finally be able to contribute to her recovery. BTW, you can check out the Drake center at their web site.
Monday 11/1, 10:00 PM - Day 20
We officially started rehab today by moving to the Drake Center. Gina is sharing a room with the Veltris, a very nice family whose mother suffered an aneurysm similar to Gina's. We spent many hours in the ICU waiting room with them and it was a surprise to find out we are roommates now at Drake.
High points of today include Gina being completely de-tubed. No IV, no catheter, no food tube... yeah! She is struggling to eat/drink enough but hopefully we can avoid the food tube. Once we get off puree of who-knows-what, she might have more of an appetite. She also had the last of her external stitches removed.
Our next hurdle is the Terson's Syndrome. She is effectively blind, unable to even see a finger held in front of her. She is coping amazingly well but this is going to be a massive set back to rehab. I spoke with the optometrist who saw her Friday and she had conferred with a retinal specialist. It might take 3 or 4 months to see if it will clear on its own and even then we may need the surgery. So based on Gina having it pretty bad in both eyes and just starting this critical rehap period, the retinal specialist recommends we proceed with the vitrectomy (note the photos are not for the squeamish). Gina is scheduled for an evaluation this Thursday and from there we will schedule the surgery (1-2 hours per eye done on different days). I'm trying to expedite the scheduling of this but it will probably add another week to her rehab minimum. I can't imagine how scary it must be to be waking up from all of this plus not being able to see.
We will have a better idea of the daily routine at Drake tomorrow. So far I have been very happy with the nurses and staff there. They use a team oriented approach with specialist in several types of therapies (e.g. physical, occupational, etc) along with the nurses and physicians. Each does their own evaluation/program and then they have weekly team planning sessions. Gina did pretty well on the exams (actually they said "fantastic" given what she has been through). She struggles with some things (e.g. her birthday) but was able to do some things like "How much money is a quarter plus a dime". I don't know how much of this they can really treat versus waiting for it to hopefully come back on its own.
Tuesday 11/2, 11:00 PM - Day 21
90 minutes until we pass the 3 week anniversary of this ordeal. Time behaves strangely during something like this... just like 1 week of vacation does not seem the same as 1 week of work. On one hand it seems an eternity since I placed that 911 call and it is hard to remember a "normal" evening with Gina and the kids. On the other hand these weeks seem to have flew by in a big blur.
Gina endured a busy day of many different types of therapists doing evaluations (speech, occupational, physical, psychological, recreational, and a few others). Overall she did very well considering what she has been through. We have work in each area, especially in the cognitive, speech, memory, and problem solving areas (these span several of the therapist areas above).
I continue to see slow but consistent improvements daily. She was a bit more talkative today and more importantly was initiating things ("I want to lay down", etc.). A few silent tears sometimes emerge and when I ask her what she is thinking about she can't articulate an answer. I know she is thinking about something though as she will stare at a fixed spot and you can see something is going through her mind.
No change in her vision- this is eating me more each day, just like back in the "bad days" of not knowing what the next operation would bring. We remain thankful of where we are and pray that she continues to improve more each day.
Wednesday 11/3, 9:00 PM - Day 22
We are starting to get the Drake routine down now. They did a doppler test on Gina's leg this morning to make sure there was not a minor blood clot (they noted one calf was slightly enlarged) and it came back clear. Gina was yet more awake today than yesterday, pretty much a continuation of "waking up". She is talking more and showing a bit more emotion (though the therapist still rates her as fairly flat emotionally- probably comes from living with me for 12 years).
Therapy sessions went well. Gina walked the length of her hallway (about 3 minutes of walking, much further than she has before). Her diet was upgraded to finely chopped brown stuff instead of puree of brown stuff. At some point we will figure out what the brown stuff is, maybe when it is in its original form. The puree of pineapple upside down cake tasted pretty good last night though, like eating cake batter (Gina let me have it ;-). The speech therapist controls her diet and described how the stroke has impacted her swallowing abilities. She is weak in the "oral" phase of swallowing but hopefully that will come back as she eats more.
Her cognitive test was most interesting. She was on a roll having answered what are the days of the weeks, months of the year, counting to 21, etc. but had a harder time with her birthday and last name. She also struggled with questions about a paragraph that was read to her. On the other hand she told me exactly how to write the checks for our kids monthly tuition. She seems to struggle when she has to articulate memories or thoughts. She continues to improve each day though in these areas. Remember that one week ago she was still in ICU with umpteen tubes and monitors, unconscious 99% of the time.
Our best event of the day was dinner time. I picked the boys up after school and brought them down to Drake. At dinner time they allowed us to take Gina and her tray down to the cafeteria and we had our first family dinner in 3 weeks- without a doubt the best "dinner out" that we have ever had. Gina even played along in a game of "Stump Mom" where we each would ask her a simple question to exercise her memory.
Tomorrow will be an important day- we see the retinal specialist at 8:45.
Thursday 11/4, 10:00 PM - Day 23
The day we had hoped would be the next step to getting Gina seeing again turned out to be an exercise in frustration. Gina and I were transported to the eye clinic at University hospital for an 8:45 appointment. About halfway through the exam, a nurse called the doctor out of the room. He returned a few minutes later, apologized, and then explained that he is not on our insurance plan (through a complex series of events we were referred to him without insurance being checked). That pretty much ended the exam. Before leaving though he did say that her retinas did not appear to be detached (good news) and gave her a pretty good prognosis for getting a good level of vision back. She can see nothing besides light/dark in the left eye and has just slightly better vision in the right (can distinguish 1 finger from several). We had waited since Monday for this appointment so we could get the surgery scheduled and were pretty disappointed by the insurance snafu. We called for the transportation to come pick us up and wound up waiting 2 hours for them. We did not get back to Drake until almost 12:30. It was a very frustrating and tiring morning for both of us. This was Gina's first field trip and I wish it would have gone better.
During the 2 hour wait, I called one of Gina's friends who works at the Cincinnati Eye Institute and she kindly set us up with a highly regarded surgeon there. He worked us into his schedule and we see him at 8:30 tomorrow morning. If all goes well, we will be on his surgery list for next Wednesday. Having lost all confidence in the transportation company, I asked to drive her myself.
Since she missed her morning therapy sessions, they had her booked full through the afternoon. She is doing fantastic at the physical therapy. She walked up and down her hall 3 times and went up a flight of steps. Cognitive and problem solving/decisions are still slowly warming up- she knew her social security number but was unable to name a single object when asked to "name 5 round objects". No one knows how well or fast these abilities will recover. Her occupational (activities of daily life) therapist was impressed at how well she compensates for not being able to see.
My subjective observation is that she continues to do better each day. She is initiating more (she even acted like she was going to slap me when I made a wise-crack remark).
Lastly, her team set a target release date of 11/24- what a way to celebrate Thanksgiving! She will have to work hard to make that date, especially with her vision problem, but I think we can do it. Note that is just a target, if she is not ready, they will keep her another week or until she is ready.
Friday 11/5, 11:00 PM - Day 24
Our field trip to the Cincinnati Eye Institute went much better than the trip yesterday. Special thanks to Rhonda K. (a friend of Gina that works there)- she got us in with a very good surgeon when things fell through yesterday. Although today was her day off, Rhonda drove up (with kids in tow) to help us through the admission process. Thanks Rhonda!
The exam went well- the prognosis is good for Gina regaining her vision. They will operate on the left eye next Wednesday. I take her back the next day at 7 AM and they remove the patch at which point she will hopefully be able to see! That will be a major boost for her morale.
Significant milestones today- Gina signed her name (and it looked like her signature) and is now using the "facilities" (which was a major concern). After a fatiguing 3 1/2 hours of sessions, Gina was too tired to even eat dinner so we left early.