About Me

Kathryn Bradley was born on 2/5/91 and given a Hawaiian name Kahiwalani meaning "Gift From Heaven" She has been a special gift from the day she was born.

Tuesday, January 31, 2012

Sodium Plan B

Sodium Plan B 1/31

A new plan of attack today. We started giving Kathryn only water half sodium and half regular water every hour and a half. Hopefully it will start reducing the sodium. It was even higher today once we finally got the report (175). Yes, this is a dangerous level for seizers. So, now there is another plan on top of this plan. We will receive an IV pump to pump water in over night. Could have waited for morning but would that really be in the best interest of Kathryn? I don’t think so. I had to promise to monitor the pump over night. Well, that’s a no brainer.

We had a water come out of the mouth and nose today. Richard was Johnny on the spot and stopped it. It worked out ok. Grandma was right there to help.

Kathryn had a nice hair wash this morning by Mona. Richard than brushed her hair they way she would like it. A little later he read some more Harry Potter. Mom read some more Unlikely friendship stories.

Alli, Kathryn’s friend who worked on the WWU Relay for Life with her came all the way down from Everett to visit. She brought Kathryn a soft Fluffy pink dog and a very soft hot pink blanket. Lots of soft and pink. Last year Kathryn and Alli planned all of the activities for the relay and they had a different activity every hour all night long.

Two friends from Camp Goodtimes came down to visit too. Watermelon and Putt Putt are their names. They brought Valentine window clings and dinner. Yum! Yum!

Richard was sitting with Kathryn today holding her hand. She would give a squeeze each time he would try to pull away so he just stayed there for a while.

Matt came by and we took some pictures of him and Kathryn with her wearing the beautiful necklace he gave her.

Our IV pump arrived around 7:30 pm and a bunch of other stuff to go with it that we don’t need or want. So I signed the paper work stated I didn’t want half of the stuff. A back pack for Kathryn to carry around her IV pump in. Really! A bunch of heprin flushes and we just gave away 300 of those that the last place sent. I wasn’t on top if it enough to make them take it back. The list is longer than that. If you have insurance or even if you don’t watch out for medical supply places sending way more than you need. Stuff we can’t even use. I will be returning all of the stuff that came tonight but the bags of water to be pumped. Returning the pump too. We have one much better than the one they went. Ours will detect air in the line and the one they sent won’t even do that.

Well I hope this flushing the body with water gets rid of the sodium problem. At least the tummy is a bit better. Not so hard and getting things moving. We even heard sounds with the stethoscope.

Don’t know what the nurse will get here to set up the pump but it is 9:00 pm. Hopefully he or she will be here soon. She was a fabulous person. I think most of the time was spent just in conversation. Finally to be 11:00pm

Love to All

Monday, January 30, 2012

Oh Sodium 1/30

High Sodium 1/30

So we just can’t get this sodium game right. Kathryn’s sodium had gone up last week and we stopped giving her the sodium tablet that costs somewhere around $400 a piece. But instead of her sodium going down over the weekend like we all thought it would it went up. So now we are in the same situation as if it were too low. If it is too high it can cause a seizer and we are nearing that number. If we bring it down too quickly this can cause a seizer. Sodium is a very touchy deal. Make sure your sodium is in check! We are changing the water that she gets to regular water. She was only getting .9% sodium water because her sodium was too low now we are doing half and half to hopefully bring it down slowly.

Now something good. I didn’t finish talking about Kathryn’s visit with Matt last night. We told him to just tell her about his day and what he has been doing and he did this. This was while he sat next to her bed and held her hand. We let him lay next to her in bed and they were so cute together. He told her a story. It was great! All about a Panda and a Unicorn. Of course two of Kathryn’s favorites. He said Kathryn usually interjects to help him with the stories so this one wasn’t as good. My heart was breaking as I watched the two of them together and saw how broken hearted Matt was. Kathryn clearly enjoyed her visit with Matt. She was definitely listening to his story. I forgot to say that she reached up to touch the blanket when Matt told her it was so soft.

Her tummy was finally emptied last night too. It felt soft and flat like it should when she went to bed. She slept great!

By morning her tummy was hard again. We are hoping the medicine will do its thing again so her tummy doesn’t hurt. They day went well and Richard read more Harry Potter to her. Then we did the 3:00 food and meds and as Richard was giving her the water it started coming out her nose and mouth. An over flow and she had plenty of room. We cleaned her all up and the 6:00 one went fine but we gave a lot less water. And the 9:00 went fine too.

Robyn (Carol’s friend) came by to and brought some beautiful pink roses. I have never seen Roses so perfect. Auntie Carol and Uncle Hugh came by too. Auntie Carol and Grandma Ann worked together putting away Christmas and Dad got all of the boxes up in the attic. That was a big chore.

Matt came by in the evening and brought us a wonderful dinner made by his mother. It was delicious! Matt got a nice response from Kathryn. She opened her eyes and listened to him. He said something about doing thumb wrestling and she responding by moving her thumb. She must be a little competitive. She was trying to play and win. She was more awake I think this evening because Matt came by again. He’ll just have to be a regular. Scott just said, “He’s good for her.” I agree.

She is all tucked in bed and looks very comfortable.
Good Night and Sleep Tight
God Bless You All

Sunday, January 29, 2012

Belated Bog 1/28 and 1/29

So we had a couple of scares over the past two days. Saturday Kathryn’s oxygen dropped right after we fed her. Well it was just too much pressing upon her lungs. It was also because she didn’t have any room since her bowls weren’t working and now her tummy was full too. We were very scared but worked our way through it. On Sunday we had another scare when her oxygen dropped. This time it hit the 60’s and once in the 50’s. We figured this one out too. She hadn’t been suctioned for a while and this was creating a blockage. Usually you can tell when she needs this suction but this time she was at 90 something for oxygen and then down she went. Richard did the suction and we also did some breathing treatments and up she went. It is all pretty scary to be part of.

Saturday she woke up as Scott opened the blinds so the light would shine in from outside. We tell her the date and time to keep her up to date. We read to her and played music for her throughout the day. Her two roommates (Mitch and Lucas) came down from Bellingham along with Lauren, Emily and Katherine. Of course Mitch got a smile since he is her second brother. Kathryn enjoyed them very much. Mitch, Lauren and Katherine all spent the night Friday to Saturday and they all helped with taking down Christmas. They were all gone by 3:00.

Kathryn’s aunt Gin and Uncle Pat came over Saturday evening. They also got a nice little smile from her when they came through the bedroom door.

Our wonderful neighbor came up late that night as we had called him about Kathryn’s tummy. He is a GI doctor. He checked Kathryn out and described the problem to us and then gave us some things that we could try. We did those things and them helped some. But the main reason is that her digestive system just isn’t working correctly or much at all. Her tummy is getting emptied but the rest of the way out is getting slowed way down. He also called us on Sunday to check to see how things were going and if there was any improvement.

We finally went to bed around midnight.

Sunday morning Kathryn woke up with her eyes wide open. I (Mom) talked to her for a long time while she had her eyes opened and I knew she was really here with me.

She had the rest of her aunts and Uncles come by today (Pete, Ket, Janice and Kainoa –Rick, Darlene, Julia and Matthew – Mike and Dorothy). Her friend Sarah drove down from Bellingham too. And the Larson Family came by in the late afternoon. Of course she gave the Larsons some attention. She opened her eyes, gave a smile and a hand squeeze. They are like her second family.

We changed her bedding today and cleaned her all up so she would be fresh and clean when her boyfriend came by. He arrived around 8:00. It was finally their turn to share Christmas. Matt gave Kathryn a beautiful necklace with blue topaz and a diamond in the middle. His aunt gave her a big Panda blanket. Kathryn gave Matt a beautiful flannel that he vows not to ruin by shrinking it. She also gave him some little treats (fun stuff).

She seemed to enjoy her day of visitors (especially the last one Matt). The day went well other than this morning. Nice to see family and friends.

Take care and know we love you all. Keep praying for us.

Friday, January 27, 2012

Team Bradley

I really am short for words tonight. Kathryn is lying in bed and fading in and out. She will wake usually if her name is said real loud. Responses are hit and miss. That cute little smile she has acquired is shown very little.

Richard started reading Harry Potter. Carol has been reading a book with short stories about unlikely friendships between animals. Dad set her up with the Beetles this morning and gives her kisses.

I got this interesting email today. It was a prayer. I really thought the timing was unusual. Anyhow I did send it off and ask that anyone who gets it to please complete the task.

Time… Time is so precious. I became a teacher because I loved watching people learn form me. But I also knew that this position would allow me time with my own children. I have been fortunate to have a great deal of time with my children. We have done many special things together. Our family has taken many vacations that have been so fun. We have had good quality time together. We have created so many wonderful memories. One thing that was always important to our family was to sit down together at dinner. Each of us would go through our day sharing what we did. This has always been a special deal for us. I loved hearing about Kathryn’s and Richard’s day. I felt we had a special family the way we shared things. We referred to our family as the Bradley team many times. As a team we could accomplish so many things.

Now, as a team we take care of one of our members. We tend to her every need. Carefully we watch her and we do our best to make sure she is comfortable. When she doesn’t respond we have to just do what we think would be the best thing for Kathryn or what we would want done for us if we were her. Kathryn is never left alone. Two of us are usually here with her. Mom sleeps with Kathryn every night. A promise kept, that she would never to be alone. We let all the nurses go so we can do all the care taking.

Continue to pray for the Bradley team as we continue to fight this battle.

Thursday, January 26, 2012

Smiles and Kisses 1-26

Smiles and Kisses 1-26

The warm sun shown through Kathryn’s bedroom window. Richard made sure the sun warmed her skin as the beams came through. She did enjoy it.

She got out of bed twice today. At the beginning of the day we didn’t have much of a response from her but as the day went on we were able to get more and more. She gave out smiles and kisses to all of us. I (Carol) know my heart jumped for joy when I knew she was giving me a sweet little kiss and so I had to be greedy and ask for one more.

Richard finished reading “The Giver” today. It is nice to lie there holding her hand and listening to Richard read.

Grandma had to leave today to check on things at her house. She has been a big help. As we listened to the Physical Therapist today Scott said several times, “Grandma does that”. Grandma has shown us many things to do to help keep Kathryn happy.

We had a bath aid come today as well. She was one of Carol’s students back when she taught at Mason. Very nice girl and so gentle. Carol worked with her to give Kathryn a bed bath and wash her hair. Wash her hair with real shampoo and water in bed. The student was teaching the teacher some new tricks. Carol has always said she learns form her students and this was just one more of those learning situations.

Kathryn’s room smells so good. She received a beautiful vase of flowers from Unique Beverage yesterday. Just thought it was more medical supplies but it was flowers and chocolates instead. A nice surprise.

Tomorrow we will start taking down the tree. Still looks great and could probably last another three weeks or so. It would look a bit odd to still have a live Christmas tree up in February.

Kathryn is laying her in her bed just sleeping (8:30pm). We will have to wake her to feed her a little and give her meds at 9:00pm. We must move her a bit to make sure she doesn’t get sore. Comfort and peace is what we strive for. Hopefully she will let some more friends come visit. I know she is happy after a visit. Her smile always says so.

Keep the prayers coming. We also love to hear from you. We read all the comments every day. I know some of you haven’t been able to leave comments for some reason so you can email Carol at cab82461@yahoo.com if you would like to leave a comment and aren’t able to on the blog.

Good Night – Hold the ones you love tight in your arms and tell them you love them.

Wednesday, January 25, 2012

A Better Day 1-25

A Better Day 1-25

So the day was much better today. Still somewhat of a rag doll but responsive. Even some movement and a little exercise in bed. The strange thing is that her left arm is now weaker than her right. Just before today her right arm was the weak one that she would hardly use and now it is reversed. Her tremor in her right arm is less than it use to be too.

Kathryn let her boyfriend come see her. She enjoyed it very much. I can’t say it enough; Matt is a great guy!

She felt good enough today to go downstairs even if it was for only a few hours. It is a production to get her up and down the stairs but well worth it.

Her sodium is up and her platelets are higher than ever and this was one her own. 92,000 - The average guy probably has more than this but we were going to the clinic or hospital almost weekly to get platelets because they would drop down around or below 20,000. I think she left the hospital with 72,000 or so.

We saw good things happen today and hope for more tomorrow. Keep the prayers coming.

Tuesday, January 24, 2012

Rag Doll 1/23 - 1/24

RAG DOLL 1-23/1-24

The 23rd started off ok with Kathryn requesting a shower. Richard and Mom got her all together for one. It was a lot of work as she could not stay awake. Our Christmas the day before may have worn her out. She was floppy like a rag doll. The shower was worth it because Kathryn felt so good after.

She chose to stay in her room and not go down stairs. Around 2:50 she had her food coming out of her nose and mouth. Thank goodness Dad was right there and turned her on her side and cleared her mouth. The nurse from home health was just leaving and we called her back. It was nice to have someone right there who was in the medical field. We discussed the food with the nurse and with the doctor later and decided the recommended amount is just way too much for our little one.

After this food episode Kathryn was in bad shape. She had already been extremely sleepy and now not responding very well to any of our questions. Through the night we watched her and watched as her oxygen level fell to the 70’s . We saw in the hospital what an oxygen level in the 60’s will do and it is not pretty. We were scared and kept rousing Kathryn to breath. We listened to music most of the night. We all prayed for Kathryn too. We made it through the night.

Today (Tuesday 1/24) Kathryn started off pretty sleepy still floppy like a rag doll. But as the day went on she came out of it little by little through the day. Richard and Scott have been reading to her all day. Her room is now our gathering place. Thanks goodness she has a good size room. Hanging out together has been good for all of us. Kathryn has even smiled and laughed a bit today. Yesterday there was very little. Her oxygen has dipped into the 80’s but has mostly stayed in the 90’s.

Hopefully tonight will not be as scary as the last. Continue to pray for Kathryn. This is in God’s hands and his alone. I had a vision of Kathryn and myself (Mom) writing books about our experiences. Of course she was doing all of the illustrations. One of the books was titled, “When man gave up on me God healed me.” I would love to write this book.

Pray for the day that I can sit with my beautiful daughter and write books that we share with children and families in similar situations. Pray that we will work together to give hope and encourage faith in others through our journey.

We are going to watch or at least listen to the movie “ELF”. I think Kathryn knows the entire movie word for word.

Sunday, January 22, 2012

Merry Christmas 1-22

Merry Christmas 1-22-2012

Today we celebrated Christmas. Princess our dog was the big show of the day. She loves to open the presents in her stocking. She also tried to open one of Kathryn’s gifts under the tree. We had to show her which gift was hers to open. That silly dog even stole the catnip mouse from the Dude the cat.

Kathryn opened her gifts slowly and with a little help. She enjoyed her gifts and gave a few oohs and ha’s along with smiles.

Nathan, Danielle, Dennis, Karen and children came to paray for Kathryn. Kathryn responded well with nods and smiles. After Nathan sang she smiled and clapped. She loved the music and the prayers for her. As many of you have prayed for Kathryn they prayed for her healing. They prayed for strength for our family. It is difficult to be strong but we are holding together because we have great support and faith.

I must also say how wonderful it is to live in a neighborhood where we know our neighbors and they support us with such love. We have good people around us.

Thank you everyone and Merry Christmas!

Saturday, January 21, 2012

Home Sweet Home 1-21

HomeSweetHome 1-21

Last night was our first night with a nurse in house.  It was nice to know there was someone with an eye on Kathryn all night.   I (Mom) don’t remember the last time I slept in my own bed even if it wasn’t all night.  A Mother never minds getting woke up to comfort her child.

Kathryn did walk with help all the way from her bedroom to the bathroom.  We really need to work on building her muscles back up.  She had another nice relaxing bath.  She was really enjoying it.  At the hospital you don’t get things like a nice warm bath.  Mom finally got a nice long shower too. 

We had a nurse during the day.  This gave Mom and Dad a chance to go get lunch together.  Richard stayed home with the nurse as we said Kathryn would never be without one of us here. 

Tomorrow will be our Christmas.   No big dinner because Kathryn can’t enjoy a meal of real food.  She was able to laugh a bit about me (Mom) spilling her food on her and everywhere.  We will do the stockings and presents.  I plan on having a great picture with the panda hats Kathryn (Panda) received as a gift.  It should be a wonderful day!

Friday, January 20, 2012

Finally Home 1-19, 1-20

Heading Home 1-19

We were actually allowed to go home on Thursday.  Oh, the weather was frightful!  Scott went home early to get things ready and meet the RT at the house to get the humitafier and suction machine all set up.  Richard went to the pharmacy to get all of the meds for Kathryn.  One of the meds they sent us home without.  It was probably the most important one too.  Richard ran around the city looking for this drug that the hospital didn’t even have.  He found it and we now have enough for 20 days.  Our doctor and the Mary Bridge pharmacy are looking for a way to get this drug or find a drug to replace it.  It is the drug that is controlling her sodium level.  Kathryn and Mom waited at the hospital for the ambulance to take them home.

They left the hospital around 4:30.  Mom sat in the front of the ambulance and gave the driver directions.  As they approached the hill down to our house the driver asked the other parametic if he should head down the road.  He said something like, well it depends on what they are having for dinner just in case we get stuck.  Well the ambulance made it down the main road but not up our driveway.  They pushed Kathryn through the snow up the driveway and into the house.  Then they tried to turn around.  Yep, They got stuck at the bottom of the driveway.  After we got Kathryn all settled in Richard went down and helped the guys get out.  They finally got out around 6:50.  The ambulance rallied its way up the road.  Good thing no other vehicles were coming down at the same time.

Once all settled in and the ambulance was out of the driveway we lost our power.  Thank goodness we have a generator.  All was fine.  Our nursing staff could not make it so Mom just slept with Kathryn instead of having a nurse.  Kathryn slept much better in her own bed.  She did want to get up at 4:30 am until Mom told her how early it was.  She wanted to take shower.

1-20 begins

Our power came back on around 4am.  The day was filled with organizing all the stuff that had been dropped off at the house as well as meeting with the nursing people and home health care.  We also met another nurse for Kathryn’s care.  This took many hours (4 or 5).  Kathryn did finally get her shower.  She felt so much better as any one does after a shower. 

She was able to try some vanilla ice cream with chocolate syrup.  This is also part of speech therapy.  Kathryn enjoyed tasting something different.

Snuggling with a cat (either Klyde or Dude) was nice too.

Tucked in bed at 10:00.  Waiting for the nurse to ring the door bell or call and say she is lost.  I can understand since the ambulance didn’t have directions to the house because the Thomas guide didn’t show it.  Living in a secluded area is nice but comes with some challenges.

Getting our home situation all figured out!

Wednesday, January 18, 2012

Doctor’s Ok to Go Home 1-18

Straight from the doctor we heard the words Home and Tomorrow.  No more silly talk about changing rooms either.  I found out our nurse put the kibosh on that one.  Hopefully home health will have everything at the house by time we arrive tomorrow.  Only a few things to get and a few things to do here before we leave too.  The plans have been discussed and are in place.

Kathryn got to have something other than water.  She had some cranberry drink but is still asking for strawberry milkshakes.  This time it was late in the night and it was “pink shake McDonalds”.  I got it!  As soon as her swallow is strong enough she will get her strawberry shake.

A shower today too!  A real one.  That always feels good.  Her hair is so soft. 

An early afternoon nap in preparation for PT.  Pam is going to work her today.  We brought in a wheel chair and walker for Pam to adjust for Kathryn. 

I just talked to the lady from Apria the company that is delivering all the equipment, food and trach care stuff.  Everything is either delivered or will be delivered within an hour of our arrival home tomorrow.  Yeah!

Kathryn is a bit sad today as she was yesterday.  I think being unsure of her future makes her sad.

So PT Pam was not here today so Kathryn’s nurse helped us get Kathryn up and standing with her new walker.  Then she got into her new wheel chair.  We took a trip down to a special patio where nobody had been.  In fact we had to have a security guy unlock the door for us.  Richard pushed Kathryn around in the snow doing doughnuts and such of course.  It was a good adventure.

Maybe the OC again if Kathryn can stay awake.  She keeps falling asleep.

Love to all

Tuesday, January 17, 2012

Going Home ??? 1-17

What day are we going home?  I don’t know and will not guess again.  There is a good reason for not going home just yet.  That is sodium.  Her sodium dropped to 129 this morning and the doc changed the drugs again.  So now he needs to see if this new order of drugs will get it stable and that takes time.  It is better to try it out here rather than at home.  Maybe we will go home Thursday or Friday.  That darn sodium!

We had an extremely busy day today.  We had nurses come visit for what Richard calls “Nurse Speed Dating”.  Kathryn liked one but not the other.  We need to find two more.  We will be sent some more nurses for Kathryn to meet and interview tomorrow.

The guy came out with the bi-pap machine today and told us that it would not work with the trach.  That was a waste of time.  Then the FDA also has its issues with Kathryn getting a bi-pap machine to take home.  Oh, our government.  You should have seen the paper work the doc would have had to file out and all of his answers had to be yes.  He would have had to say that she would have to use the machine 12 or more hours a day.  That makes no sense.  If you need it 8 to sleep you should have it.  Our government needs to butt out of some things and let the doctors do what is right for the patient.

Kathryn did get up in a chair with her nurse and OT put her back in bed.  Then PT got her up and took her walking.  She walked with the walker about 3 times as far as she did yesterday.  Then she got in the wheel chair and pulled herself along with her feet.  Then we wheeled her up to the 8th floor to see the view of Tacoma.  If the Mountain would have been out it would have been big and beautiful.  She was so exhausted when speech therapy came by that she could hardly open her eyes.  So the speech therapist gave us some things to do later and said he would see her first thing tomorrow.

I’m not sure if we will stay in this room tomorrow for our supposed last night or if we will move for to the main floor.  We were told we were moving today but that changed.  We are happy that it changed.  We like it here and the staff is fabulous. 

Klyde (Kathryn’s cat) came to visit.  Scott (Dad) is so good about things like that.  He brought Klyde in and Kathryn sure enjoyed petting Klyde and just having him by her side.

We never watched the OC last night since Kathryn fell asleep so maybe tonight we’ll watch a couple of shows. 

Kathryn is doing much better and just wants to get home.  She is working hard and doing her part to make things happen.

Monday, January 16, 2012

Walking/Talking, Wanting to go Home

Mom snuggled in bed with Kathryn around 9:30.  They both slept well until 12:30 when the bed needed to be change because the feeding tube exploded.  Kathryn slept great the rest of the night.

This morning she was wide a wake and ready to hop out of bed.  She told Richard that you and Mom know how to do everything and I don’t need a nurse at home, I ‘m ready to go home.  Wednesday is the day we should be heading home now.  Home health and all of that are pretty much arranged.  We will be shown in the hospital how the bi-pap machine works tomorrow.  Most everything will be delivered to the house tomorrow or Wednesday.  I think we will go home by ambulance just because of the snow. 

Kathryn had Holly for her nurse today and she made sure Kathryn got up and to work.  She had Kathryn get up and sit in a regular chair.  Mom did her nails.  Then Pam with PT came and got Kathryn to walk with a walker.  She walked out of the room to the hallway then got in a wheel chair.   From getting into the chair with Holly to getting back in bed a good 3 hours went by.  She took a bit of a rest and then Ernie with Speech therapy came by.  She almost got a strawberry shake.  Strawberry Ice cream instead.  Of course it was just a few little bites but it sure was good.  He said her swallow is right on track.  She isn’t ready to eat or drink but she is on the right path.  She also did some talking today with the talking valve on.  OT came by immediately after and did some great core exercises with her.  We took over the trach care today and Holly (the nurse) taught us how to do the feeding through the feeding tube. 

Tomorrow will be even busier.  We have nurses to meet.  We have the bi-pap machine to learn.  Hopefully we will take over most of the feeding and the administering of the meds.  Scott (Dad) will be meeting people at the house for deliveries.  Richard will be picking up some supplies.  Carol (Mom) will be meeting people at the hospital.  We also have to clear out this room.  We may need to rent a u-haul truck!

The ENT doctor will be by on Tuesday or Wednesday to replace this trach with a new one.  Hopefully a speaking one.  The trachs get replaced once a month.

So, If you are wondering, I think Christmas will fall on Jan 20th or 21st.  The tree is still alive and well.

Time for another couple of sessions of the OC tonight.  Snuggling in bed will be great!

Believe - Believe - Believe  Kathryn will get well with the healing hand of God!  

Sunday, January 15, 2012

A Real Shower 1-15-2012
Last night was a better night of sleep. She took Ambien for sleep and spent the first few hours doing weird things in her sleep. Richard said she was moving (imaginary) things in her bed.  The night before she was having conversations with someone and smiling a big old smile.  Maybe she was talking to an angel or something and the angel was telling her good things (reason for the big smile).  At 2:30am an hour long foot massage seemed to help.
She had gone on the bi-pap machine.  She didn’t like it much.  It would be weird to be breathing on your own all day and then have a machine pump air into your lungs every 5 seconds if you don’t do it yourself.  This machine keeps a steady pump of every 5 seconds or whatever it is set at.
She woke this morning ready to go.  She was trying to get out of bed immediately.  She got off the machine asap and was on her own breathing all day.  She is going without a machine tonight.  The machine will be here and ready to go just in case she needs it.  The doctor and all of us figured that she does fine when she falls asleep during the day so why not try it at night.  This is the place to try it.  When she was on spontaneous (breathing on her own) on the vent she did just fine.  Remember she had those long periods 35-40 seconds of no breathing but would catch up.  The bi-pap machine can’t be set up this way.  It will only deliver breaths that are separated by regular increments.  Tonight will be a big test.  They will be and we will be watching her oxygen and respiratory rate real close.
During speech therapy she had water go down the wrong pipe so that was not so good and really made Kathryn feel bad.  She had too much junk to cough up first.  Hopefully she has coughed up enough today and will get a bunch out in the morning so she can swallow well with the speech therapist.  She really wants to be able to eat or drink something other than water. 
Kathryn’s nurse paged PT several times today and they finally said they were not coming.   So her nurse said that she would get Kathryn out of bed and into the shower herself.  She is so thoughtful.  Occupational therapy came and the nurse didn’t have to do it herself.  She got out of bed and into a shower chair and took a real shower.  This had to feel good.  Sponge baths just aren’t the same as a real shower.
We watched Lady and the Tramp after the shower to get some rest.  A little nap and then back to work.  She worked on her exercises legs and arms.  She needs to be strong if we are going home in a day or two.  Today she ask, “May I go home?”  We have to explain that she is doing well but we need to make sure we have everything all set up at home so she will be safe.  
Watching OC tonight.  Richard is so excited!

Saturday, January 14, 2012

Under control/anxious 1-14

Everything seems to be under control now.  Her blood work is looking good.  Today her platelets came up a little and that was on their own.  This is only the second time in months.  Sodium is holding strong.  Her headaches have subsided.  She had several days of terrible pain but the last three days have either had minor or no headaches. 
The doctor is really doing a great job of getting everything working for us to get home.  He's the doc that thought about trying the bi-pap machine instead of a ventilator.  It is working great and this will make it so much easier to go home.  Now he is working on getting her meds just right and in a form that we will easily be able to administer at home.  We love him!

Although Kathryn didn’t sleep at all last night she did get up for PT and wheeled herself in the wheel chair and sat in it for a while in the lobby.  We all sat by the fish tank watched the fish cuddle.  We are letting her sleep for a little bit and then we are going to make her exercise.  The goal is to wear her out so she will sleep tonight. 

I have had several people tell me that the anxiety is common when people are in the ICU for a while.  Going home can be scary.   Here they feel safe since there is a nurse or RT just around the corner at all times.  We have tried to assure Kathryn that she will be safe at home.  We will have a nurse at night to watch her and a machine that will help her breath if she needs it.  This anxiety explains why she has had a hard time sleeping the past two nights.  She knows we are close to going home.
We turned her bed so she can look out the window and watch for the snow.

Our tree is still up and doing fine.  Scott bought it 40 days ago and we put it in the house the next day.  It is amazing.  Usually a tree would have been in such bad shape two weeks ago that it would be long gone by now.  It’s now the 14th of January and it is still alive and not even dropping a bunch of needles. 

Early evening Kathryn got her hair washed with real shampoo and water.  One of the nurses had a great method for doing this in bed.  It must have felt so good. 

She has also been practicing talking and did some leg exercises.  Maybe we have burned her out so she will sleep tonight.  

Friday, January 13, 2012

Improvements are Happening 1-13-12

Improvements are happening 1-13-2012

Wow, last night her sodium came up to the normal range.  Yesterday afternoon it was 124 and this morning it came up to 137.  I was told that her tumor may keep her sodium from ever being normal.  The normal range is 135-145 so she is in the normal range.  Hum, is God working is healing on her?  I believe so!  Her blood pressure has also become normal in the last 24 hours and remained there. 

Kathryn rocked it last night on the vent.  She was on a mode where she would breath on her own and only gets vent help if she stopped breathing for a certain length of time.  They watched her for a while to see how long she would go without breathing and then set the alarms within that time frame.  The final alarm setting was 40 seconds.  They won’t allow much longer than that.  With this setting the alarms did not go off.  Yeah!  She asked to be put on the boat which is basically just oxygen passing by and not connected to the vent at all.  That means still breathing on her own.  This is good.  She is ready for this day to get started  (9:30 am).

Kathryn had PT around 10:30 am.  She pulled herself up in bed, got in the wheel chair and wheeled herself down the hallway.  She has felt good all day.  Much better than yesterday.  Things are looking up!

A little rest in the afternoon.  Then came the Big, I mean Huge deal!  Kathryn spoke with the talking valve on.  She sad, “I think we are doing really good here.”  The next thing she had to say was, “I want a strawberry milkshake.”  This is a major step in the right direction.  Nathan said we would see things happening and they are. 

This has been a very good day.  God’s will be done.

Movie for tonight is:  Little Rascals

Thursday, January 12, 2012

Faith and Hope

Kathryn spent most of the morning resting.  Rest is good.  In the afternoon she got up in the wheel chair again.  We were able to find a nice big window where she could look out and also feel the sun shining upon her face. 
In the evening we watched Chocolat with Johnny Depp.  Kathyrn’s favorite.
Being 20 has posed some interesting issues.  We have been told adults don’t go home on vents.  We have been told they go to a nursing facility or the special facility in Tukwila where we would learn about vents.  This would take at least a week or two and be far away.  If you are a child they go home on vents without leaving the Tacoma.  Parents are trained on the vents in the hospital for 3 days or so and then sent home with nursing care.  Insurance issues make everything take longer too.   To get a vent to be trained on requires insurance authorization which could take a while.  Then the training.  Then finally home.  It gets rather confusing.  Our wonderful doctor and many others are working hard and I’m sure overtime to get this all done so we can get Kathryn home.  Why a ventilator?  It seems when Kathryn sleeps she forgets to breath.  She will have a long pause between breaths and this sounds the alarm on the vent. 
Last night a healer stopped by to pray with us and give Kathryn God’s message of his love and healing.  He told Kathryn he only comes to people if God has told him to.  He also told Kathryn that her job is not done here.  She will get well and she will paint.  God will give her visions of what to paint.  Going through this is necessary to have testimony.   People will be so amazed about her recovery that there can be no scientific explanation and we will be the ones testifying to God’s work.  Kathryn smiled and glowed while he spoke with her eyes wide open.  He told each of us what we had been thinking and what God had to say about our thoughts.  I know that none of us had shared any of those thoughts with anyone.  How could he know without being told by God?  This was a wonderful experience.  It renewed faith and hope.  He reminded me that this is not a miracle but a healing.  The difference is a miracle happens right now and a healing takes time.
Kathryn slept well and woke up this morning 1/12/2012 with a smile on her face and her eyes both wide open. This was the first night she had a blood pressure that wasn’t high all night.  It actually fell within the normal range for several hours.  She also went to bed without a headache and didn’t complain of a headache during the night.
 She had PT this morning but had little time so she just sat on the edge of the bed for a while.  No Huge headache like yesterday morning or throughout the day.  Her nurse was the same one today as yesterday and she said she noticed a big difference in Kathryn from yesterday to today.  This difference was in the positive direction.
Sodium is still low 121.  It has been 121 for a while but I just got the report that it is now119 (1:50 pm).  They are changing some things to work on this now.  More 3% sodium and a new sodium drug.  This is very scary since Kathryn had her seizer at 119.  The last test that just came in had gone up to 124, This means good.
Scott brought in Kathryn’s cat, Klyde.  He stayed in his carrier while Kathryn put her hand in the carrier and just touched him.  The two of them just took a little nap together.  It was very sweet.  They were both happy to see each other.
The doctor at the ICU unit is going to have Kathryn try a setting on the vent tonight that is similar to what a machine for someone with sleep apnia would use.  If this works then we would not need a ventilator and life would be so much easier.  It is now a wait and see….
Getting an infusion of red blood cells tonight.  Just got the sodium level 124.  Yeah! It is going in the right direction.  Makes me feel better.  I would love to see the 30’s once again.
Movie tonight is “Benny and Joon”… 

Tuesday, January 10, 2012

Rough start/sweet ending 1-10-2012

Today started out a bit rough.  We didn’t get much sleep last night so this made the morning not so good.  Then Kathryn’s doctor came in to talk to us.  We had to discuss some difficult topics. Talking about home care and hospice.  Just the word hospice usually scares people.   It made all of us sad and feeling a little low.  When PT came in at 11:00 Kathryn wasn’t too excited so she really didn’t do too much.
Later she had a headache.  So, she was hurting too bad when PT came back again.  Our super nurse came to the rescue and got Kathryn to do some swallowing.  Then later after Kathryn rested she got her to get to the side of the bed and stand.  She did squats and practiced balancing.  She really went above and beyond the call of her regular nursing duties.  This really made Kathryn feel good.
She went off the ventilator at 11 am and at this time 8 pm she is still off of it.  This is fabulous! I think our super nurse has really helped boost Kathryn’s confidence. 
Kathryn’s boyfriend is here right now holding her hand and watching “Mean Girls”.  He is a great young man.  We all love him very much. 
Thank you all for reading and commenting on Kathryn’s blog.

PT and more PT 1-9

More physical therapy in the afternoon.  She got out of bed and into a wheel chair.  She was able to get out of the room all of this was done while breathing on her own.  Good job Kathryn!

She was going to have OT but she was too tired.  Two rounds of PT and breathing exercises all day is a huge work out. 

The headache also returned and of course the brave stoic one didn’t way anything or want anything for it until it became a bad one.  Her blood pressure continues to be a pain in the butt.  It goes down with drugs but doesn’t stay there.  This needs to get sorted out before going home.  Still working on the sodium too.

Over all a good day for Kathryn until the headache took over.

Monday, January 9, 2012

Working Hard 1-9

Kathryn had a peaceful night of sleep.  The best one yet!  I guess being buried under a pile of blankets is the key and of course a few buddies. 

She had physical therapy at 9:30 this morning right after she just completed all of her exercises with us.  She sat on the side of the bed, stood up, did squats, and marched in place.  She is now asking “When will Occupational therapy be here? “ Also asking about her breathing exercises.  It’s 10:30 and she is on her breathing exercises.  Such and Eager beaver!  Or is that Panda.

Counts:  The platelets have fallen but still above 100,000.  The sodium is down to 126 and we would like it between 135 and 145.  So they are trying new things.  Less water and more sodium. 

We are looking forward to a great day!!!

Sunday, January 8, 2012

Show off 1-8

Late afternoon Kathryn had asked to do spontaneous breathing and she was doing well.  She would forget to breath when she typed but with Mom reminding her the horns never sounded.  Then some friends came by and She had to show them how well she could do on her own without the machine.  She did great.  We said she was showing off her breathing skills.  She is trying to talk but can’t with the cuff up on this trach.  She wants to talk so badly.  Dad heard her and I can hear her but it is hard to make out.  It really isn’t the situation where she should even be trying. 

Last night the blood pressure was a huge issue.  She is now on BP meds every couple of hours.  They also gave her Lasik’s to take the extra fluid off of her.   They did get the headache calmed too.

We watched the movie Wall-E.  Kathryn was buried in stuffed animals.  You could hardy see her.  Great little movie to remind us to take care of our beautiful earth and to get out there and exercise. 

This morning Kathryn finally rested well.  She was fidgety last night but fell sound asleep around 6:15 am and is just waking up 11:30.  They had done their best to keep it quiet and still do the jobs they need to do. 

Woke up all smiles and sunshine.  It’s amazing what a few good hours of sleep will do.  Doing breathing exercises, did sit on the side of the bed with OT and she just did PT.  It will be a hard working day for Kathryn.  Maybe she will sleep in the night instead of the morning with all of this work today.

Love to all

Saturday, January 7, 2012

G-Tube in place 1-7

Kathryn had her G-Tube put in this morning.  They were in and out in an hour.  The actual procedures took about 12 minutes.  It was so fast that when we saw the doctor come out to talk to us we all thought there must be a problem.  Just the opposite.  It went so smoothly that it didn’t take any time at all.  Oh, a G-Tube is the feeding tube that comes out through the tummy.

Last night Kathryn had headaches and was given the Dilaudid which is related to morphine.  It made her so spaced out!  She was up all night.  She was thinking about everything and anything.  She asked me to tell Dad to bring her eyebrow brush and scissors at 3:00 am. 

It’s 10 am and she is sound to sleep.  We are hoping that she gets a good couple of hours of sleep to make up for some of what she missed last night.

Friday, January 6, 2012

Headache 1-6

Kathryn had a headache most of the day.  Her wonderful nurse worked and worked at trying to figure out what would make it go away.  Finally a fix.  So this means we didn’t get to do PT but of course the “Panda” girl had done some on her own in the morning and again once she felt better she did a bunch.  Kathryn is very strong.  Don’t let her size fool you. 

She had her feeding tube taken out of her nose today.  It is nice to see all of her face.  She has the cutest little nose.  They will put in a new feeding tube tomorrow that will come out of her tummy.  Don’t know what time.  This should help keep the headache away.  It is believed to have been caused by the tube in the nose.  It will build up pressure in the sinuses. 

Her counts…  We are again working on the sodium.  It was down to 124 and now up to 127 and checking it every 4 hours.  Her platelets had gone up but have now gone down to 51,000 and this will be checked tomorrow morning before the procedure.  May have to do a platelet infusion in the morning and if so they are ready so there will be no wait time.  Platelets take just a few minutes 20-30 to infuse a bag.  My guess is that we will be infusing in the morning. 

We ended the day with a movie “The Notebook”.  It is such a touching movie.  True love, something we should all experience.

Thank you again for the comments, prayers and good thoughts.  We love you all very much.

Thursday, January 5, 2012

Breathing 1-5

So Kathryn was on spontaneous breathing all night and all day.  This means the machine is not breathing for her but gives her a little pressure just to make sure she breaths deep enough.  She moved off of the machine altogether around 6 pm and is breathing great with good numbers on the screen.  No alarms going off or anything!  Yeah!

She again worked her legs as per her PT homework.  Don’t need to tell her to do her homework.  When PT came she sat on the edge of the bed again like yesterday.

In the morning the doc said she has some stuff in the bottom of her lungs which needs to clear.  He started a new IV antibiotic to clear this.  The sodium had dropped so they reduced water intake and continued with the sodium tablets. On the brighter side of things her platelets actually came up 4,000.  Her platelets have only gone down in the past two months so this is good.  Other red blood parts have come up too on their own.  Maybe her bone marrow is starting to function correctly again.

The other discussion this morning was to have her feeding tube moved from going down her nose to coming out the tummy area.  She wants this done.  The nose tube makes pressure and gives her headaches.

Finally she requested that Dad bring the following: Bryan (her blue bear), the tiger, her snake and finally both Panda pillow pals.  They are all in bed with her along with Jeffery the dog.  It is a full bed.  Her new night nurse may not find her amongst all the buddies in her bed.

We have enjoyed all the comments and the cards very much. They are so nice to read. 

Wednesday, January 4, 2012

Lung Issues 1/4/2012

Now we are experiencing lung issues.  It has been there but we thought it was getting better.  The cloudy lungs can mean a few things 2 of which are easier to fix however one of those two would need an explanation of why it happened in the first place.  Maybe a mucus plug developed and this can be taken out and clear the lungs.  The second is a collection of moisture that can be sucked out with a needle through the abdomen but why did this happen.  The third is pneumonia, which we would have to wait more days for it to clear.  She did have a CT scan late in the day so we will get the report in the morning.

She did get a little bit of air out of her mouth today but not enough to say a word or make noise.  This is better than zero air movement that we had yesterday.  After talking to the ENT doctor he said it wasn’t worth trying until they change the tube to one without a cuff.  I’m starting to get it.  The cuff is like a balloon that they can inflate and deflate in the throat around the tube.  They keep it inflated so air doesn’t escape around the tube. They will not put in the tube that doesn’t have a cuff until she can go all day and night without the ventilator.  The tube without the cuff will allow her to talk.   Kathryn is breathing well without the ventilator.  She is taking short shallow breaths and they would like to see longer deeper breaths.  Short quick breaths will tire her out and has.  She is also scared she will not be able to breath.

She had PT today.  She actually started off on her own doing all the exercises given to her yesterday.  She is a good student.  She did extras too.  Then the PT and OT people came in and got her to sit up on the side of the bed.  Tomorrow the goal is to stand up.  She is still plenty strong.  She is more nervous than anything.

We are being well fed here (the family).  The clinic has given us food vouchers which have been very helpful.  Scott’s sister and family brought us stir fried rice one day.  Richard’s girlfriend’s Mom brought some nice snacks and Carol’s Mom has too.  Our niece Janice has brought us Pizza twice from the Rock and Lovey from camp brought us delicious sandwiches tonight.  Thank you!  

Tuesday, January 3, 2012

Taking Tube??? 1/3

She didn’t spend enough time off of the ventilator yesterday to get the talking cuff today.  It would require changing her trach tube and they only want to do this if she is really ready.  So one more day of exercising her lungs and other parts that have to work to make the breathing happen.
Didn’t get much sleep either so she is extremely tired – So am I (Mom)
Well now I’m a bit confused and they said they are going to bring in valve with which she can try to talk.  This will not required changing the tube.  This may or may not work.  I sure don’t want her to be disappointed if it doesn’t work because it is not the optimal situation.  The trach tube will eventually be changed to a smaller one.
Physical therapy came in today.  Gave Kathryn some exercises.  Some of which Grandma Ann had already been doing with her.  Grandma is very wise.
She is trying to catch up on her loss of sleep from last night too.  A beanie pulled down over the eyes works great!
Fabulous job of breathing on her own.
Her neurosurgeon and PA stopped by to see her today.  That was nice.