Where to begin...
There is so much to say and not much time to write. Thanksgiving was great, we were all together, Dad and his girls, with our families. We were at Karen's house pretty much all day. Lisa was great! I went and got her ready and then took a trip to the cemetery, where mom is. I rolled down the window and let her talk to her. She looked over and said, "Hi Mom, I love you...Happy Thanksgiving"...and cried. Well, of course I did too. She sobbed how hard it is. I think she was talking about missing mom, but I also think she was talking about herself.
Lisa is FINALLY getting stronger. She is weepy about how she is now. It is hard to see. I try not to cry along with her, but sometimes, I just can't. She hates being this way and she tries so hard to deal with it, but she just is not able to contain her feelings. She used to be so good at that. I fixed her an omelet the other day and was teasing her, she tells me she would help me cut up the ham if she wasn't one handed and I look over and there she is, crying. I stopped what I was doing and came over to her and told her that I know how hard it is...not really, but kinda...but that I (we) are just glad that she is here! I keep telling her how far she has come and she will only get better. Poor thing.
Karen took her to the doc to get her stitches out, did that and told Karen that the hole in her brain should stay open as long as fluid is passing through it...that is what keeps it from closing. He hopes...mean while, we are to watch her fevers for the next 3 months! If there is a fever, there is infection and we need to get help. Pray for continued success for this procedure. Then, Karen whisked her off to Peoria to her neurologist whom she hasn't seen since the shunts...Karen said he was sad...really sad to see her this way. He told Karen that this doesn't happen in too many patients and that there is such a small percentage that this could happen to. Karen had tears, Lisa had tears...and I am so glad that I was not there...but when Karen told me...I had tears. It stinks!
I try to not cry...lately it is hard. I am trying to accept it and I am trying not to be pessimistic...as Lisa says sometimes, I just feel like it. I snap out of it and think to myself...It is what it is, and there is nothing I can do but deal with it, so, like Lisa, we deal with it and hope that she will get back to some kind of normalcy. She will...but it will take a very long time.
Happy Thanksgiving! We are happy to be together and realize that material things don't matter, only people and hopefully, our children are watching us and learning the lesson, at a young age.
Happy Holiday Season to you!
Friday, November 26, 2010
Saturday, November 20, 2010
Life with Lisa
Life with Lisa...
I totally enjoyed today because of Lisa! Ron and I were able to visit and care for her in a way that is hard to explain! She was full of joy and tears today.
The Joy: To spend time with us. For Lisa it was to break up the day and to simply be around a sister & brother who love her! For me it was the simple act of being able to help her in her new environment for her to pass time. We ripped paper and did word searches. She spelled many words and solved many puzzles today.
The Sorrow: Leaving Lisa :( She started to cry in our visit early when she recalled what she used to be able to do. I reminded her "that is why we rip paper", to get out our frustration. She immediatley started to smile and continued to rip paper! We are ripping envelopes, but keeping the return addresses. She wants to thank everyone who has sent her a cards!
Leaving Lisa tonight... TOUGH! It's like leaving your newborn at daycare not knowing what you are coming back too. We said our good night prayers in tears. I asked her why she was crying and she said "because I love you"!
Lisa is not one to cry, NEVER has been! Burns... Scrapes... not a tear. This is incredibly hard for her and for us.
I totally enjoyed today because of Lisa! Ron and I were able to visit and care for her in a way that is hard to explain! She was full of joy and tears today.
The Joy: To spend time with us. For Lisa it was to break up the day and to simply be around a sister & brother who love her! For me it was the simple act of being able to help her in her new environment for her to pass time. We ripped paper and did word searches. She spelled many words and solved many puzzles today.
The Sorrow: Leaving Lisa :( She started to cry in our visit early when she recalled what she used to be able to do. I reminded her "that is why we rip paper", to get out our frustration. She immediatley started to smile and continued to rip paper! We are ripping envelopes, but keeping the return addresses. She wants to thank everyone who has sent her a cards!
Leaving Lisa tonight... TOUGH! It's like leaving your newborn at daycare not knowing what you are coming back too. We said our good night prayers in tears. I asked her why she was crying and she said "because I love you"!
Lisa is not one to cry, NEVER has been! Burns... Scrapes... not a tear. This is incredibly hard for her and for us.
Sunday, November 14, 2010
funny
OK, so I come in and get Lisa supper, watch alittle TV and get into the shower...ask her to stand up and she tells me she is going to collapse...and she did...very slowly and graceful I might add. She lands in the corner of the shower and I laugh and make a joke out of it. She laughed and asked me "now what?" I told her we are gonna get up! Well, we did it and it only took one try...I went in the other room and said a quick prayer and then got to work. We did good, and let me tell you, it took both of us. When we got back into the chair, I high fived her and she had a smile on her face and told me that she didn't know if I was gonna leave her there!!!!! I said...Lisa Ann, do you think I would do that? Well you never know, was her response.
She is all smiles and tucked into bed, I am headed home. Night!
It could have been disastrous! But making light of it made it all good!
She is all smiles and tucked into bed, I am headed home. Night!
It could have been disastrous! But making light of it made it all good!
Friday, November 12, 2010
Home Again
The first thing Lisa did when she got home was cry. When I asked her why she had tears, she just blurted out...I'm just glad to be home. She layed down for a few hours and we decided to make cookies. Lisa took the refrigerated dough and placed it on the cookie sheets. Cute...and she enjoyed them!
She is emotional and she is weak, but I think she will get lots better now. No shunt and her head looks good, if you can say stitches look good.
Every one at her Apt complex were happy to see her. They were concerned about her. I don't know how much longer she will be without staff. It will be interesting to see how all of this will play out. I hope it is soon.
Lisa is Happy and gonna get a shower tonight, it has been much too long for a head to toe soaking. She will feel much better.
She is emotional and she is weak, but I think she will get lots better now. No shunt and her head looks good, if you can say stitches look good.
Every one at her Apt complex were happy to see her. They were concerned about her. I don't know how much longer she will be without staff. It will be interesting to see how all of this will play out. I hope it is soon.
Lisa is Happy and gonna get a shower tonight, it has been much too long for a head to toe soaking. She will feel much better.
Wednesday, November 10, 2010
Looking Better
I walked into the hospital and there is the nurse and the Dr. the nurse said they are going to take the drain tube out. So I walk in and said HI Lisa, she was happy that they were going to take that out. There sat her food, well if you call it that. It was a liquid diet and I said are you hungry, she said yes but I don't like that, so she is slowly getting back to good old Lisa. The Dr. did what he needed to and Lisa took it like she usually does, like a trooper. The nurse said are you hungry? She asked Lisa what do you want to eat and Lisa didn't have much to say I think she was in shock that they were going to feed her more than liquids. So I said how about a grilled cheese and they go that would be fine and how about pudding!!! So that is what she had. She said she was ready to get out of that hospital, but agreed that she would stay tonight.
I get ready to go and give Lisa a kiss I asked Parker if he would give Lisa a kiss and put the stool by her bed, he got up on the stool and put his head into Lisa so she could kiss his forehead, that's how he kisses you, gave her a hug and I said to Lisa he doesn't give those out to just anyone, her reply was "It's about time" So tonight I left with a good feeling that maybe this is going to work and she will be back on her road to recovery AGAIN, as Lisa would do I will cross my fingers and that is what we are doing with the help from everyone who is praying for us and from the Good Lord.
Tonight I get a phone call from Linda who lives in the apt. with Lisa and a long time friend, she wanted to know how she was doing and was worried about her and that she is her family and was just very worried.
One more thing, this is how out of it Lisa was this past week. I dumped out all of Lisa Dt. Pepsi out from her frig. and she had no problems with that. Lisa in her right mind would be fighting me for that one. She told me that would be fine. I guess we should of taken her to the ER much sooner. We are learning and figuring out how to take care of her. So her photo with all her Dt. Pepsi in the frig is just a picture that no one will forget.
I get ready to go and give Lisa a kiss I asked Parker if he would give Lisa a kiss and put the stool by her bed, he got up on the stool and put his head into Lisa so she could kiss his forehead, that's how he kisses you, gave her a hug and I said to Lisa he doesn't give those out to just anyone, her reply was "It's about time" So tonight I left with a good feeling that maybe this is going to work and she will be back on her road to recovery AGAIN, as Lisa would do I will cross my fingers and that is what we are doing with the help from everyone who is praying for us and from the Good Lord.
Tonight I get a phone call from Linda who lives in the apt. with Lisa and a long time friend, she wanted to know how she was doing and was worried about her and that she is her family and was just very worried.
One more thing, this is how out of it Lisa was this past week. I dumped out all of Lisa Dt. Pepsi out from her frig. and she had no problems with that. Lisa in her right mind would be fighting me for that one. She told me that would be fine. I guess we should of taken her to the ER much sooner. We are learning and figuring out how to take care of her. So her photo with all her Dt. Pepsi in the frig is just a picture that no one will forget.
Going smoothly
Lisa is adjusting to her situation. As always.
She has been sleeping for much of the 48 hours. She did well the day after surgery and is doing well today. She has had 2 CT scans now and will have another 1 or 2 before she leaves.
Karen comes early in the AM as does Dad...sometimes she knows we are there, others she doesn't because we don't want to wake her. She looks peaceful, and really good. She remembered a few of the nurses that cared for her just shy of 8 weeks ago. They joked with her about her addiction to DP and she told them that she would like to be called "Lisa"...We had the same nurses as before and they were sad she was there again, but were glad to see her...if that makes sense. I joked with them about the people who come with her!
I waited around for the results of her CT scan...it looks really good. Everything is normal (for Lisa) and there is nothing out of the ordinary going on. She does have a bit of a hemmorage going on, but nothing threatening, or abnormal from the procedure. The Drs are awesome and positive. They ask for questions and one has drawn out twice what they were going to do and then what they did. We got his autograph:)
Lisa had a chest Xray and a blood clot thingy...both were negative. That is good. Lisa is in good spirits...irritated that I called during Wheel...so she is on her way to normal. Karen saw her tonight and did not cry when she left...again, that is good. She did yesterday and earlier today when we left. Aunt Carolyn brought her a stuffed animal and she was clinging to it. Uncle Jim did not want to wake her when he went to see her.
Karen was there tonight when the dr took out the tube in her head!!! WooHoo! NO SHUNT! If it all goes well (pray for this) she will be healed and the hole will stay open so it can reroute the fluid a different way to be absorbed by the body the way that yours and mine does. They are keeping a very close eye on her. The wound will get air tonight so it will heal. She has had a cute little hat on her head since surgery, it looks like a newborn cap.
The nurses told Karen how strong she is...Yay! That is a far cry from the end of last week. She sat in the chair for awhile and has a good appetite.
So, for tonight Lisa is good. She is in good hands. We don't have to worry about her and she is on the road to a full recovery. I believe it!
We don't know for sure, but they want to keep her another day or 2, she might be coming home on Friday or Sat!
She has been sleeping for much of the 48 hours. She did well the day after surgery and is doing well today. She has had 2 CT scans now and will have another 1 or 2 before she leaves.
Karen comes early in the AM as does Dad...sometimes she knows we are there, others she doesn't because we don't want to wake her. She looks peaceful, and really good. She remembered a few of the nurses that cared for her just shy of 8 weeks ago. They joked with her about her addiction to DP and she told them that she would like to be called "Lisa"...We had the same nurses as before and they were sad she was there again, but were glad to see her...if that makes sense. I joked with them about the people who come with her!
I waited around for the results of her CT scan...it looks really good. Everything is normal (for Lisa) and there is nothing out of the ordinary going on. She does have a bit of a hemmorage going on, but nothing threatening, or abnormal from the procedure. The Drs are awesome and positive. They ask for questions and one has drawn out twice what they were going to do and then what they did. We got his autograph:)
Lisa had a chest Xray and a blood clot thingy...both were negative. That is good. Lisa is in good spirits...irritated that I called during Wheel...so she is on her way to normal. Karen saw her tonight and did not cry when she left...again, that is good. She did yesterday and earlier today when we left. Aunt Carolyn brought her a stuffed animal and she was clinging to it. Uncle Jim did not want to wake her when he went to see her.
Karen was there tonight when the dr took out the tube in her head!!! WooHoo! NO SHUNT! If it all goes well (pray for this) she will be healed and the hole will stay open so it can reroute the fluid a different way to be absorbed by the body the way that yours and mine does. They are keeping a very close eye on her. The wound will get air tonight so it will heal. She has had a cute little hat on her head since surgery, it looks like a newborn cap.
The nurses told Karen how strong she is...Yay! That is a far cry from the end of last week. She sat in the chair for awhile and has a good appetite.
So, for tonight Lisa is good. She is in good hands. We don't have to worry about her and she is on the road to a full recovery. I believe it!
We don't know for sure, but they want to keep her another day or 2, she might be coming home on Friday or Sat!
Tuesday, November 09, 2010
Good Morning
Amy, Dad and I left and Karen stayed back for about 30 min or so. When they took the oxygen mask off of Lisa, Karen said to her in her best cheerful and positive voice..."Lisa, do you know where you're at? NO. You're at the hospital and you just had surgery!" Lisa's reply..."yuck....YUCK!"
That tells me that she was so out of it, she hadn't a clue what was going on or that she was so sick. Before we took her to the ER I sat in front of her and tried to get out of her how she was feeling...to no avail. I asked her if she felt like something was wrong and she replied in a weak and timid voice, "something is wrong"
For them to do the surgery on that day meant it was pretty bad. But we pray now that the hole that they placed on the floor of the tissue inside her brain will remain open for the duration and that it will not close up. I have faith that it will. The doctors say that if it will close, it will be in the 1st 2-3 days, so they are monitoring it closely.
This has got to work. She has been through so much. But we are thankful that it was not as bad as someone who we talked to who told us of her husbands shunt series that he has gone through...Lisa's could have been worse.
God is good...had Lisa had the UCP people working with her last week, they would not have known her, her personality or anything that we know about her. It was His plan that we would be with her throughout all last week so we could see her go downhill and be able to get her help. It can only get better from here on out. It has to, and I truly believe it will.
Gods Blessings to all of you who have said a prayer for us. We have been lifted! Thank you!
That tells me that she was so out of it, she hadn't a clue what was going on or that she was so sick. Before we took her to the ER I sat in front of her and tried to get out of her how she was feeling...to no avail. I asked her if she felt like something was wrong and she replied in a weak and timid voice, "something is wrong"
For them to do the surgery on that day meant it was pretty bad. But we pray now that the hole that they placed on the floor of the tissue inside her brain will remain open for the duration and that it will not close up. I have faith that it will. The doctors say that if it will close, it will be in the 1st 2-3 days, so they are monitoring it closely.
This has got to work. She has been through so much. But we are thankful that it was not as bad as someone who we talked to who told us of her husbands shunt series that he has gone through...Lisa's could have been worse.
God is good...had Lisa had the UCP people working with her last week, they would not have known her, her personality or anything that we know about her. It was His plan that we would be with her throughout all last week so we could see her go downhill and be able to get her help. It can only get better from here on out. It has to, and I truly believe it will.
Gods Blessings to all of you who have said a prayer for us. We have been lifted! Thank you!
Monday, November 08, 2010
Surgery Is Done!
Lisa is out...in 45minutes!!!!!!
Dr Seibly just told us that Lisa had a "beautiful anatomy" and he could see through the scope exactly what he needed to do and that he poked on hole in her 3rd ventrical and within 2 or 3 days, we will know if it was successful. She will have a tube coming out of her head for those days in case it does not work. That will be her safety net.
Lisa will be out of recovery in 1 hour and she will be here at the hospital for a few days. Yay!!!!!
Dr Seibly was so great and he was so pleased with how things went. It was perfect! He is hoping that this will work...and we are praying it will.
Thank you for your prayers and for your concern for Lisa. We could not be doing all we do, if it wasn't for all those prayers for us. We needed them, and still do:)
Dr Seibly just told us that Lisa had a "beautiful anatomy" and he could see through the scope exactly what he needed to do and that he poked on hole in her 3rd ventrical and within 2 or 3 days, we will know if it was successful. She will have a tube coming out of her head for those days in case it does not work. That will be her safety net.
Lisa will be out of recovery in 1 hour and she will be here at the hospital for a few days. Yay!!!!!
Dr Seibly was so great and he was so pleased with how things went. It was perfect! He is hoping that this will work...and we are praying it will.
Thank you for your prayers and for your concern for Lisa. We could not be doing all we do, if it wasn't for all those prayers for us. We needed them, and still do:)
Prayers Please!!!!!
From my last post, some of you read between the lines and knew that things weren't going the greatest...Well...Karen and I took Lisa to ER today because she was not with it at all...
She was slower than slow in everything and we noticed it last week but we thought it could have been because of the flu and other shot. No.
Lisa has gotten weaker as the week progressed, slow in everything, from eating, to standing up, to answering simple questions. She no doubt had something going on. We thought it could be her shunt again, and after normal blood tests and urine samples, they did another CT scan and reported that she has significant water in her brain again! Aughhhhhh!!!!!!!
As I am writing this at 5:15 she is in surgery and she was fine with that. She has been very quiet and she is very cooperative and is just so sweet, thanking the nurses for poking her and cleaning her up and even for the Dr coming in to write on her head with a sharpie...They all said, you're welcome. Cute.
All I can tell you is that we need prayers...we need for the Dr to do the right thing and to safely do what needs to be done. He will maybe (only if it is safe) poke a hole in her 3rd ventrical so that fluid will drain through that hole and elliminate the shunt all together...There are risks...another stroke, bleeding...etc. This has Got to work! We are hoping that this will be our answer. They do this for people who have tumors, but Lisa is a different case and unique, they are trying. The Dr performing her surgery is Dr Seibly, he will be taking over Dr Katner's position and will become Lisa's dr once Katner retires...so this is good.
We JUST got the call that surgery just started...5:25. Please continue to pray for her, for her strength, and for her determination to keep fighting. We need them.
Dad is on his way, Amy came in and Karen and I are here for her. It was exactly 5 months ago that she had her 1st shunt. Pray for God's will...thank you.
She was slower than slow in everything and we noticed it last week but we thought it could have been because of the flu and other shot. No.
Lisa has gotten weaker as the week progressed, slow in everything, from eating, to standing up, to answering simple questions. She no doubt had something going on. We thought it could be her shunt again, and after normal blood tests and urine samples, they did another CT scan and reported that she has significant water in her brain again! Aughhhhhh!!!!!!!
As I am writing this at 5:15 she is in surgery and she was fine with that. She has been very quiet and she is very cooperative and is just so sweet, thanking the nurses for poking her and cleaning her up and even for the Dr coming in to write on her head with a sharpie...They all said, you're welcome. Cute.
All I can tell you is that we need prayers...we need for the Dr to do the right thing and to safely do what needs to be done. He will maybe (only if it is safe) poke a hole in her 3rd ventrical so that fluid will drain through that hole and elliminate the shunt all together...There are risks...another stroke, bleeding...etc. This has Got to work! We are hoping that this will be our answer. They do this for people who have tumors, but Lisa is a different case and unique, they are trying. The Dr performing her surgery is Dr Seibly, he will be taking over Dr Katner's position and will become Lisa's dr once Katner retires...so this is good.
We JUST got the call that surgery just started...5:25. Please continue to pray for her, for her strength, and for her determination to keep fighting. We need them.
Dad is on his way, Amy came in and Karen and I are here for her. It was exactly 5 months ago that she had her 1st shunt. Pray for God's will...thank you.
Sunday, November 07, 2010
It's going...
 |
| Coming home (on Halloween) |
For lots of reasons, staff have not started to work with Lisa yet...lots of RED tape (Karen and I are her main caregivers at the moment) we thought we had all our ducks in a row...but we have been mislead (just paperwork stuff) for the time being and we (with the help of Amy for tonight), have been taking turns getting Lisa up in the morning and putting her to bed at night and showering and making sure that she has her meds and is toileted during the day. It is exhausting. I am not complaining, I, and I think I speak for my sisters, do not see it as a burden, but a privilege to take care of her, like we did Mom. In many ways, she reminds me of mom and us taking care of her. It is just really hard to do it when we all live out of town. We all have families, and kids and are busy with their lives too. We worry and we hope and we want her to get better. So far, she hasn't. But we still have hope and it has only been a week...Lisa got a Flu and pneumonia shot on Tuesday...she got really, really weak. I hope that that is all it is. She doesn't seem to be coming out of it. We need to give it time, I suppose. She LOVES being home...she will tell you that much. She isn't much of a talker these days, but once harassed, she will give it right back. She is still so sweet and apologizes for accidentally hitting you with her foot or ramming into the wall with her wheelchair. She occasionally says her cuss words, but uses them appropriately I must say.
Life is good. We just hope it gets better. I know it will...in God's time, not mine.
Monday, November 01, 2010
She's Home!
She arrived with just a little help from her friends.....
Lisa arrived Halloween! A bit emotional, but happy to be in her home. First night, SCARY! All were nervous! Happy to report(by Karen) she slept well in her own bed!
The energy was awesome! She was welcomed and cheered by everyone! A moment I wish I could bottle! Kinda like watching a parade as a kid, seeing your favorite character up in air bobbing through the sky-srapers waiting to explode and it didn't (OK... that was me watching Garfield)! We are all so excited for Lisa! Lisa was overwhelmed and is ready to LIVE! Can't explain the emotion and energy! But can totally give thanks to God and and everyone praying for her for this day to arrive!
Loving Lisa!!!!!
Lisa arrived Halloween! A bit emotional, but happy to be in her home. First night, SCARY! All were nervous! Happy to report(by Karen) she slept well in her own bed!
The energy was awesome! She was welcomed and cheered by everyone! A moment I wish I could bottle! Kinda like watching a parade as a kid, seeing your favorite character up in air bobbing through the sky-srapers waiting to explode and it didn't (OK... that was me watching Garfield)! We are all so excited for Lisa! Lisa was overwhelmed and is ready to LIVE! Can't explain the emotion and energy! But can totally give thanks to God and and everyone praying for her for this day to arrive!
Loving Lisa!!!!!
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