Wednesday, August 31, 2011

Good morning! I am at the hospital early this am because they found a clot in Ken's right leg yesterday. After additional tests last night they started a heavier dose of blood thinners and will be putting in a filter today to keep the clot from reaching his lung or brain and causing further damage. This type of clot development is not uncommon if you are not moving for a while similar to the clot that can develop during a long airplane ride. He had swelling in his right leg that wouldn't go away and he complained of pain when I was putting lotion on his leg. We pointed this out to the doctor which led to the tests. Continue praying and I will post after the procedure.

Monday, August 29, 2011

Well, I finally have power in the house now. The one thing I have learned in the last month is to appreciate every day as it comes. We spend so much time looking ahead that we miss the things happening around us that we should be grateful for. In the last month my husband had a stroke,and we survived an earthquake and a hurricane in the same week. To top it all off my brother, Dalas was in a car accident tonight. He is ok, just a few cuts and bruises, Thank God! He had the dogs with him and Bo and Pink are fine as well.

Ken was a little down yesterday. I think he realizes his limitations more and the storm didn't help. The nurse told me that he was worried abut me during the storm. He is the one that takes care of things. In the short time we have been married, I have come to depend on him. Took me a while to find the flashlights in the house yesterday. He was better today and we had a good conversation with the director of the stroke program, Dr. Conroy. He has some swelling in his right leg that we are watching carefully. They will be doing a Doppler test to see if there are any additional clots in his leg in the morning. Hopefully it is just a minor issue and not a clot. Because he is so young they are being aggressive in his rehab and will be doing electronic stimulation to the muscles in his right arm soon. The good thing is that he is still aware of his right side and is learning to use his left hand and leg to support the right. His speech is returning very slowly. We are seeing a new word or pattern each day but not a complete thought yet. This is probably the most frustrating thing for him. He is thinking something but can't express the thought.

Take time out of your busy lives to appreciate each day and the small joys!
Good night!

Saturday part 2

The hurricane has arrived! Luckily I had arrived at my brother's house already. The power is out here now as well. I am exhausted so I am turning in. I tucked Ken into bed before I left the hospital so he should be safe for the night. I hope this is all over by the morning. I do get to spend some quality time with my puppy so that is good
Good night!

Saturday, August 27, 2011

Still waiting on the hurricane. I have everything but the kitchen sink in my car so I am prepared to stay overnight at this hospital if needed. I probably will go to my brother's tonight and spend some time with my dog who I haven't seen in three weeks. Ken had a full morning of therapy and he is comfortably in bed now waiting on dinner to arrive. More attempts to communicate something to me today that I don't get completely. It has something to do with the rain.

Friday, August 26, 2011

Happy Friday! I missed a few days and I apologize for that but we did have an earthquake and we are now preparing for a hurricane on top of everything else. Ken is becoming more independent each day. Today he transferred from the wheelchair to the bed by himself. The hospital would prefer that he not do this because there is a risk of falling but I appreciate his independent spirit.

I have to tell you all how blessed we are. We are surrounded by people who are praying for us, helping us get the things we need, sending cards, flowers and gifts, and visiting Ken. I cannot express how grateful we are for all of this.

Stay safe this weekend !

Tuesday, August 23, 2011

Well I hope you all survived the earthquake! What a shock! Ken and I are both fine. My first full day back at work and there is an earthquake. Is this a sign?? So I was able to get to the hospital early since the office closed. Ken had a pretty rigorous physical therapy session. He did very well at standing, bearing weight on his right arm and leg and taking small steps. The effort wore him out so he fell fast asleep right after dinner.

When he first had the surgery the sight of his head being slightly sunken in was very shocking. Then the swelling filled it out too much and that was hard to get used to. The swelling is down considerably now and the sunken side is a welcome sight. It means that he is healing and the more the swelling reduces the more function he will regain. He is in good spirits and I am grateful for that. Tomorrow is his treatment team meeting and we will set a potential discharge date. I am excited to see what they determine. More to come tomorrow!

Good night!

Monday, August 22, 2011

Today was my first day back to work.  I lasted an hour.  My Director is wonderful and sent me out to do something for myself and get some rest.  This was really needed.  I went to lunch and came home and took a nap.  I feel so much better.  Ken had a full therapy day today.  His swelling is coming down noticeably now.  Each day he is more alert and interactive.  Tonight was the first time I saw that his memory is okay.  The Social Worker had left me some papers earlier in the day on the nightstand and he made sure I found them before I left.  He was tired tonight so I was able to get home a little earlier.  It is funny how he tells me to go home by waving his hand at me.  Each day I see him coming back more and more.  We still have a long way to go but we will be alright!
Good night! 

Saturday and Sunday, August 21 and 22, 2011

I am behind a day. Sorry about that! Here is the wrap-up.
Saturday - when I arrived at the hospital Ken was not in his bed. I took another step and found him on the floor next to his bed. Apparently, he thought he could get out of bed on his own. I pressed the call button and started checking him out. He did not hit his head (this is good because he has no skull on the left side). He was laying on his right side which is the weaker side. When I asked him where he was going he very clearly said "I don't know" and began laughing. Once he was up and determined to be okay we had to have the talk.
Me - so you know that they are going to have to restrain you in the bed now.
Ken - shrugs his shoulder and laughs.
Me - I'm just saying, don't be mad at me or them because you brought this on yourself.
Ken - more smiling and laughing.
Me - finally laughing too!

I am glad he retains his independent streak. The staff thought I was so calm but really this was to be expected once they showed him how to get up. I take it as a good sign but we can't risk further injury so the restraint is on when I am not there.

Sunday - a pretty laid back day. No therapy on Sunday's. We read the paper and some magazines and then got up in wheelchair in am before lunch and again when family came to visit before dinner. After dinner he was able to get out more words than I have heard previously. It wasn't a complete sentence but it was close so I am hopeful that he will progress quickly. I am back at work tomorrow so I left just before 8 tonight. We always pray together before I leave each night. I look forward to this time.

The goal is 100% recovery but we will accept 98%!

Friday Part 2

Today was a good day. Ken had a full day of therapy and I got out to have lunch with wonderful friends and a gorgeous new baby girl, Rhea! I think the break was good for both of us. Ken was evaluated by the occupational therapist, speech pathologist and physical therapist. In just a day I can see the changes in his independence level. He is feeding himself with the exception of the cutting of the food. Tonight he operated the controls to raise and lower his bed so he can go to sleep. Hospitals have really become so user friendly in recent years. This place has a snack room with milk, juice, yogurt and Graham crackers (my favorite snack next to cheese) for Ken and family. They have free wireless access and are generally very accommodating to family members. The hospital administrator walks around the facility and introduces himself to family and patients. I feel really good about the facility as a whole. Ken is fortunate to have a nice roommate as well. Mr. Miller has been very accommodating. He has been at the hospital for two weeks and will be going home on Tuesday. I am not sure why he was here but he is a pleasure to talk to and I get him snacks from the vending machine when I go down. He is quite fond of snickers candy bars!

My focus for the next week is housing so if you know of anyone renting a ground floor condo in Maryland let me know. It could also be two story if there is a bedroom on the main floor.
Good night!

Friday, August 19, 2011

I arrived at the hospital at 7:00 am to help with breakfast which didn't actually come until 8:00. I really could have used that extra hour of sleep. They bring Ken's schedule for the day with breakfast. It is packed full. He has therapy from 9:00 - 4:30 today with meal and rest breaks built in. I am glad because he needs to be busy. He was never a person to just sit around. He will have therapy 6 days per week. I am going to use the time to take care of errands and get some rest for myself.

National Rehab is listed as #13 on the list of the best rehab hospitals in the country.

Thursday, August 18, 2011

It seems like the only way I know the actual date is when I write the first post of each day.  The days seem a blur right now.  We moved today to the National Rehabilitation Hospital.  The morning was spent preparing for the move and keeping the hospital focused on the goal of moving today, not after the next set of tests.  Ken is getting restless and it is time to begin working on the deficits he has.  Each day he is more alert and is returning to the familiar ways.  The transition went well overall.  He seemed a little skeptical when we first arrived but interacted werll with the staff and was able to show them what he can do already.  He can help with dressing and undressing himself.  He is feeding himself with 1 to 1 supervision to make sure he doesn't take too large a bite.  He always eats dessert first and who can blame him it is the best part of the meal!  The rehab hospital is the best in the country so I am confient we will see progress. 

It was like a reunion there tonight as we saw families who were with us at Georgetown as well.  The 21 year old with the brain tumor is walking independently now and it has only been a week.  Interestingly enough I have never seen this young man and I doubt that they have seen Ken but we feel connected to each other's success.  It has been 13 days since the event and Monday will be two weeks since his craniotomy.  He will get the staples out on monday and two weeks after that he will be fitted for the replacement piece. 

The staff at both hospitals have been so nice to us and so supportive of his progress.  We have promised to return with Ken walking to bring candy for the nurses on the Neurology units.  We have tons left from the wedding still!
Good Night!

Wednesday Part 3

Keep Praying For Us! We are about to begin a long, difficult road.  I know we can make it and I wish everyone else knew what we know about who is really in charge here.  I miss my husband!  I wish I could turn back time, you know how Superman flew backwards around the earth.  I wish I could find that clot and blow it up before it got to his brain.  But I can't fly so I guess I have to be ready to move forward with what God has in store for us now.  We will come out on top!

Wednesday Part 2

Ken is having speech therapy right now. He is doing great but it is hard listening to him learn to say the days of the week and count 1-10. Pre-stroke he was so verbal but I can see his determination and his frustration. He is great at singing happy birthday now. Speech therapy encompasses more than words. It includes rhythm training as well to put words to music. They also use pictures and match items. It is very interesting.

Wednesday, August 17, 2011

Good morning!
Ken ate pretty well at breakfast this am. They have removed the feeding tube from his nose finally so we are on the right road. He is feeding himself which is just a little awkward with his left hand. He will adjust!

Today's public service announcement!
Make provisions for the handling of your affairs should you become incapacitated. Get a power of attorney in place naming someone to be able to manage your financial affairs if you are unable. This is separate from health care directives. The bills keep coming in and someone has to be able to pay them and communicate on your behalf.

Tuesday Part 3

Ken had PT this afternoon. They got him up sitting in the recliner chair. He did very well. He perked up when his Dad and his nephew came to see him. He had a real meal for dinner tonight, chicken piccata, baked potato, green beans, chicken noodle soup, and lemon meringue pie. As usual he ate all of the dessert and only a little of everything else. But he did drink all of his canned beverage. He then cleaned up the tray when he was done. No one could have told me that I would be feeding my husband after only three months and wiping his mouth. The interesting thing is that it doesn't change the love I feel for him at all. It has probably increased it. I know he would be doing the same for me if the situation was reversed.

Have a good night everyone!

Tuesday part 2

Ken is awake from the sedation. He is sitting up and drank some orange juice. He took the cup from the nurse and drank small sips independently. They want to see how well he eats dinner tonight, breakfast and lunch before they remove the nose feeding tube. It became dislodged during the heart test so they have to put a new one in just in case. He took his pills in applesauce with no problem so I am going to ask them to hold off on new tube until after we see how he eats dinner.

Tuesday, August 16, 2011

The thing about hospitals is that time moves really fast and then really slow. Ken is having a test of his heart now to be sure there are not any holes that a clot got through to get to his brain. They didn't start until almost 12 noon so I think our chances of getting to rehab today are out.

I posted some of our wedding pics in the room and they have done wonders in helping the staff see him as a person and not a patient. People stop in constantly to compliment us on the photos. I would highly recommend this to everyone.

I think we are both ready to move on. Ken is getting a little restless in the bed. He needs to get moving. He has not had real food yet because of the test so we are hoping that he will be able to eat lunch this afternoon. The sedative will last an hour or two so we should be able to eat by 3pm.

They finished the test just now. Everything looks fine with his heart. We will probably never know what caused this stroke.

Monday part 2

Good news! Ken passed the swallow study so the nose tube is coming out and he is starting on real food tonight. He has to have 1:1 assistance for now. I met with the coordinator from National Rehabiitation Hospital and they are doing the final tests so he can transfer there tomorrow. Now I just have to get his bag together tonight. He has a brand new bag of stuff from Walmart in his closet. Not sure why he was saving them but we are getting them out now!

Monday, August 15, 2011

It is a quiet day in hospital land. Ken is having his swallow study this afternoon so hopefully we will be moving to NRH tomorrow. I am hopeful that he will be able to start eating real food and not have to use a feeding tube. I am going to walk outside for lunch while he is gone. I need the sunshine.

Sunday, August 14, 2011

Today is our three month wedding anniversary. Hard to believe how quickly life changes. Ken had a pretty good day. Ken's Aunt Goldie and my Mom both left today and for the first time in a couple days I felt really alone. Ken tried really hard to communicate something to me today and I couldn't get it. The effort exhausted both of us. I began crying and he comforted me by wiping my tears and rubbing my shoulder. He sent me home early tonight to rest.

Saturday part 2

We were moved onto the step down unit today. Ken no longer needs hourly checks so now we are on the 4 hour schedule. He continues to do well and his vitals are all good. He has not pulled out the second feeding tube and has promised me that he won't. The nurse on the new unit wanted to put mitts on him in addition to the soft restraint they are currently using. I didn't have to fight her but was very clear about no mitts. The restraint is also off when we are here. I don't like to see it used all the time. When I came in this am they had it down pretty tight so I need to make sure that doesn't happen again. We are now watching one of the Bourne movies and he is focusing pretty well on it. There is a recliner chair in the new room, thank goodness, so I can be a little more comfortable. All in all today was a good day!

Saturday, August 13

It has been exactly one week since the "event" as the medical professionals refer to it. A short amount of time but yet the longest of my entire life. Today I just feel numb. It is an adjustment for both of us and we have a new life for now. One in which I do most of the talking:). Maybe that is the same actually. I never realized the importance of understanding non-verbal communication until now. Ken communicates with me through his eyes and through squeezes of my hand. A couple weeks ago we had an argument which resulted in both of us not talking much. I remember thinking how could I know what was wrong if we don't talk. I focused solely on verbal communication and ignored the non-verbal that was occurring on both sides. We got over it because it was real minor anyway but in reflection I see how important it is to acknowledge all forms of communication because the words that are spoken only tell a part of the story. Eye contact, facial expression and touching are so important and you have to pay attention to it so you know what a person is communicating to you in case words are not available. I don't know if that makes any sense but this is my blog so it doesn't have to :)

I am getting my hair done today because it is unfair to Ken to have to see me looking ridiculous. it can't help the healing process if he is scared when he sees me. On to the hospital after this. Will update you later!

Friday, August 12, 2011

Great news this morning! Ken is very alert and responsive. He was fully awake for the doctor's visits and we found out that he can sing! Apparently singing comes from a different area of the brain so if speech is affected a person may be able to sing. We sang Happy Birthday to one of the doctors. He was assessed by the PT and OT folks and determined appropriate for acute rehab. He is not quite ready to go but we put in our preference for NRH. He is progressing so well!

Thursday #2

Ken is very alert this evening. He has said yes, no and okay today. He is moving his head around and very responsive to everyone. God continues to be good to us in so many ways. Life can change in an instant if you didn't know that already I am here to tell you. I went home for a nap this afternoon and when I woke up I thought maybe it was all a bad dream. It is not unfortunately. It is time to adjust to the new normal. Keep praying and hug your loved ones!

Thursday, August 11, 2011

The swelling on the left side is down but the right side now looks like he lost a fight with the pillow. Apparently he was turned to his side during the night and it caused that side to swell. He is alert this morning. They need to get some magnesium and potassium into him before I can get him cleaned up for today. He is healing but the process is slow. Only one verbal yes today. The rest is grunting. His vision is crossing the mid-line this morning so that is positive. No one in the waiting room today. it is amazing how fast things change from day to day.

Thank you to everyone who has called, emailed, texted or sent Facebook messages. They are all very encouraging to us. I can't always respond but please know I am reading them and i read them to Ken. We need all of the support!

Wednesday #2

It seems like time moves really fast and then really slow. I am tired but I can't sleep. I want to do some work but then I don't. I have researched all I can for now. I feel somewhat lost at the moment. Ken had some pain so they gave him medication which put him to sleep for the moment. There is good news in the waiting room today. The 21 year old with the brain tumor is moving to rehab this afternoon. I am happy for them. I told them we would see them there next week.

Wednesday, August 10, 2011

The swelling is much worse today but this is to be expected. Ken looks like he went a couple rounds in the boxing ring. They have removed the central line and the drain tubes and the neurosurgery team has signed off so this is all great. He is sleeping and is waking up spontaneously as well as when you call his name.

Catching up

Yesterday was the most difficult day so far. We ended the day with Ken deciding to proceed with the craniotomy to relieve the pressure from the swelling. I am so grateful that he understands and is indicating his preferences to me. The surgery was successful in that it allowed more room for swelling and alleviated the compression on the right side of his brain. He remains responsive and alert and continues to have movement on his left side. The day had it's funny moments as well. We will have to share the angry priest story later.

Today was a good day. They were able to remove the breathing tube this am and started him on nutrition through a feeding tube in his nose. I was able to go home for a couple hours to rest this afternoon and when I returned he was alert and quite feisty. He was able to focus in on watching tv (South Park)which he loves. He independently removed his compression stocking and the pressure cuff on his left leg because he did not like them.

I am strengthened by the support of our family, friends and people who barely know us who have reached out to help. There are a number of families here whose stories are more tragic than ours and we try to encourage and pray for them as well.

More

Things change here minute by minute. They could not get the first central line in so they did an xray and are trying again right now. The neurologist that came in was pressing me to make a decision about surgery to relieve the pressure in his brain. These are quality of life decisions. Would he want to live with significant disabilities? Who can really answer these questions? These people have no idea what my God is capable of!

Monday, August 8, 2011.

Ken was started on a 3% sodium treatment for the swelling. He had a follow up ct scan at 8 pm last night which showed a 1 millimeter increase in swelling. I was called in the middle of the night by the neurosurgeon Dr. Naïr. He was asked to evaluate Ken for surgery. Even with the increase he is still alert and responsive. We agreed that surgery presents too great a risk at this time and we will optimize the medication management for now. Continue to pray for his full recovery. The power of healing is in God's hands.

Sunday play by play

There is swelling of the brain that we are watching carefully. They are starting a 3% sodium solution to help reduce swelling. The next 36 hours are crucial.

Sunday, August 7, 2011

On Friday, August 5, 2011 Ken suffered a major stroke on the left side of his brain while we were out at Solomon's Island for vacation. Anasia was with us and we called 911 and he was transported initially to Calvert Memorial hospital and then airlifted to Georgetown University Hospital. He is still in the ICU today and had made gradual improvements in his condition. He is still unable to speak well but has good understanding of what is said to him. He cannot move hir right arm or leg currently. This is going to be a long road but we will make it. We are so grateful for the love, support and prayers of all of our friends and family.