She's back ...

She's got a book ... now I know I've got my girl back

Last night she finally beat the pain!  She had a great night.  From now on during the day she will be on the morphine pump during the day and then a very strong pain medication and a muscle relaxer will be added around 9 pm to keep her pain reasonable throughout the night.  


She and I have been laughing this morning at some the funny things she has said and done during the night while on a lot of pain meds.  One night she loudly volunteered the spelling of our last name randomly in the middle of the night.  I woke up to "PIPER ... P-I-P-E-R", I guess she thought a nurse was in the room and asked for it.  That was a good one but she may have beaten it last night by announcing she was a yoga instructor and then a few hours later saying "ok mom" before putting her iv tube on her arm up to her lips like a straw.  She was thirsty and thought it was me standing next to her doing our normal routine of me holding her cup by her face and her using a straw to drink.

movin on up

We finally figured out how to get Kate to eat.

Kate had a remarkable day.  Like the last 3 days she has been challenged to fight through extreme pain today but has done everything she's been asked to and more.  Today they took out her epidural so her pain is now controlled with just the morphine pump.  Tonight we are going to add other medications and hopefully get her a good night's sleep.  Nights have been very hard for her.  She was able to take a short walk around the room today and tomorrow will try to walk further.  The chair was too hard today, she did 20 minutes but without the epidural 45 minutes was not something she could handle.  We considered the 20 a success considering how much pain she endured each minute she sat there.

movin on up


Kate was moved from critical care today to the regular pediatric floor.  This is the last stop before going home.  She still has several days in the hospital and tough challenges to overcome but moving to a regular room raised her spirits although she is going to miss the nurses she got to know on floor 4. 

Pretty toes for a pretty girl


We had a busy day between therapy and 
doctor visits but we squeezed in a a pedicure.

day 3

I woke up after Kate this morning to find her watching I Love Lucy and snacking on Apple Jacks. Her pain seems to peak at night and gets much better during the day.  We were able to keep it under control but it took lots of pillow arranging sessions and several doses of additional pain medications.  Not a lot of sleep but also no tears so we are counting it as a good night.  

Kate's machine that helps her lungs stay clear



Today she will try to make her goal of sitting in the chair for 45 minutes and continue to work on her lungs.  Her fever is down and it's likely, in part, because of her religiously using this machine.  Her hemoglobin levels have fallen to 8.8, as long as we stay above 8 the blood transfusion is unlikely.  It's normal for children who've had this surgery to require a transfusion and we expected her to have one but it would be great if she could avoid it.

reaching goals

Jellycat has an important job. He holds the pain button 
for the morphine so we don't lose it in the bed.

The goal for Kate is to be able to sit in a chair for 45 minutes.  Yesterday she could only make about 60 seconds on the side of her bed but today at her last therapy visit she pushed herself and made it for 35 so we are getting close.  Once she can do that she gets to try to take a few steps.

She is eating a tiny bit more.  I wasn't very successful in getting food in her last night.  Each time she'd say "I'll have some next time I wake up".  Today Damon took over for a couple hours between therapy sessions.    I went home to shower and change my clothes (I'm sure the staff here is grateful for that - 3 days and 2 nights in the same clothes can't be good) and when I got back he had convinced her to have some cheez its and teddy grahams so he gets the MVP award today for getting some calories in her.  A little food made a big difference.  

Kate's long thick hair had become a matted mess from all the lying down and shifting her around and now that she is feeling better she was starting to feel pretty gross.  We washed her hair in a special bowl  that is used just for people in her situation then combed out all the tangles.  We cleaned up the tape residue off her arms, changed all her bandages and tidied up the sticky tape that holds down her iv's.  She is feeling a little more human now.  She'd love to lose the hospital gown and put on real clothes but she still has an epidural plus several other tubes and wires so she's stuck with it for a few more days 

So far tonight is going well.  Her fever is down considerably and she is tolerating the pain well.  I've learned just how to position her pillows to support her back on her side but avoid putting any pressure on the part that hurts the most.  We are starting to get this thing figured out.

good news

All good news today.  The X-ray of Kate's lungs looks clear.  Her hemoglobin levels are staying steady and it looks like a blood transfusion is highly unlikely.  This is a big victory for Kate.  Kate is O negative and we didn't have a family donor for her.  We know the blood bank is safe but Kate was very uncomfortable with having a stranger's blood in her.

She had an intense therapy session this morning and did beautifully.  She sat up then stood briefly and sat in a chair for about 20 minutes then returned to her bed.  It wasn't easy by any means but she did it and did it much longer than she wanted to.  She has another one around 3:00 that she is NOT looking forward to.  The last one ended with 2 extra doses of pain medication.

This is the corset she mentioned a few days ago.  She wears it when she does activity.  It offers a little support but it mostly reminds her not to bend or twist.  She only needs to use it for the first 4 weeks after surgery.  No more braces after that!

She is awake and watching tv right now.  She's pretty quiet and dozes off often but we are getting closer to having our Kate back.

anyone have a lighter?

Kate had a much better night than the first one.  She made it until about 12:30 before the pain woke her up.  The nurses have now added another pain medication and something to relax her muscles in her back to the narcotic cocktail she is getting.  The additional medications helped immensely and she went back to sleep and stayed fairly comfortable the rest of the night.

Her fever has not subsided so they are checking her lungs for any signs of early pneumonia.  She had an X-ray about an hour ago and we should have the results of that soon.  They brought it in on a cart and did the X-ray right in her bed.  She had to roll herself onto a hard board then back up onto her side, it made her wince in pain but she did it without complaining.   Hopefully it is nothing and just from laying down and lower oxygen levels. 

I know she needs all this stuff done but I really don't like all these chemicals and radiation going into her body.  It's the polar opposite of how I've protected her since even before she was born.  I've always made a genuine effort to avoid exposing her to cigarette smoke, pesticides and too much processed food.  I'm the mom that made her sit in a car seat until she was almost 9 and the one that will leave a restaurant and drive to a different one if smoke is drifting near my family.  It's against my nature to let them just pour this stuff into her veins but I've learned when she is hurting not much matters at the moment but making it stop.  If a pack of cigarettes would ease her pain I'd stand next to her and light them for her.

good riddance day one

The nurses have her propped on her side and she is quietly sleeping.
It's such a relief to see her peaceful and not constantly fighting the pain.  She has a new set of challenges to face tomorrow but for tonight her work is done and she can just rest. 

Tomorrow morning she will start therapy again and they will check her hemoglobin to determine if a blood transfusion is necessary.  

My goal tonight is to get a few calories in her whenever she wakes up to give her energy for tomorrow.  For the day she has ahead of her I'm afraid she's going to need more than a few bites of jello.

round two

The second therapy session went a bit better than the first one.  We prepared better this time by making sure she had plenty of pain medication in her before starting.  She was able to sit for 3 minutes before lying back down, the first time she barely made it 1 minute.  It still was excruciating for her and hard to watch but the progress she made today was pretty impressive to everyone in the room.

She has had a little bit of red jello and is resting.  Julia pretty much refuses to leave her side and has spent most of the day here quietly sitting next to her, helping her takes sips of water, adjusting her blanket and cheering her on when it's time to sit up.   She is running a little bit of a fever so they are keeping a close eye on it but the nurses say it's not abnormal for her to have one after going through this type of surgery.

relief

the morphine button is working!

The stronger epidural combined with the morphine is finally giving Kate some relief from the pain.  She slept soundly for about 90 minutes before having her first therapy session.  They had her roll on her side and then sit up.  She managed to do what they asked even though her pain level was quite severe.  She was able to sit up for almost a minute with the therapist supporting her.  They don't want her laying in the same position for too long so they are asking her to start rolling on her side for a bit every two hours.  She is not excited about this idea at all but knows it's what she needs to do to recover.   They are coming back at 3:00 to make her do it all again.  She is being so brave and doing exactly what they ask her to do even when it brings her to tears.   

say eight ... say eight

The epidural and pain medicine they have been using has not been able to control Kate's pain.  She is getting a morphine pca (button she can push herself to get an extra dose of medicine) and they are going to increase the epidural level as well.  

During today's struggle to find pain relief for Kate several references have been made by our family to Kate's favorite comedy bit by Brian Regan.  As soon as the team of doctors mentioned they were going to give her morphine we all looked at each other and together said "say eight" and got a much needed laugh.

blankets and bears

The children's hospital here is so wonderful.  I can't say enough about how kind and caring they've been.  Someone just stopped in and dropped off a blanket and stuffed bear for Kate.  Nothing could make this easy but they are making it the absolute best experience it could be.  She is still pretty swollen  and has a special cream on her eyes that was there to protect them during the surgery yesterday.  A nurse is here now cleaning it off with some special wipes.  They explain each thing they are going to do before they do it and then they do it with the utmost sensitivity and care.  

just keep swimming ... just keep swimming ...

Kate just noticed her finger is glowing like ET.
This is measuring her oxygen levels (which are perfect right now)



They have increased the level of pain medication she is receiving and she seems to be doing a bit better now.  She has been rolled on her side twice this morning, the pain from that movement was pretty intense for her.  They removed the orthopat tube from her back that was recirculating her blood.  Taking that tube out hurt a lot but Kate is happy to have at least one tube out of her and they should be removing the arterial line later this morning.  They also rolled her over to fit the metal bars to her back that will be in the corset she will wear for a month after surgery.  Any movement, rolling over, raising  or lowering the back of her bed or even lifting her legs an inch causes her to wince and tear up but she is fighting through it and focusing on the fact that today is just one day and tomorrow will be better.

She is watching Finding Nemo between getting poked, rolled and questioned : )

water & chapstick

Two things that make Kate happy right now are water and chap stick.  She was very excited to move up from ice chips to liquid water.  Her night was pretty restless but she did get some sleep.  Her hemoglobin levels have stayed high enough to keep her from having a blood transfusion so far.  Her back is very achy and hurts but she has to lie directly on it for now.  They have tried to prop up one side a bit and change the height of the head of her bed to help make her more comfortable but not much is working.  At some point they can prop her on her side and ice her back but it may not be until tomorrow.  They told us to expect today to be her worst day for pain.  She currently has an epideral and is receiving pain medication through her iv.  Through all of it she is smiling when she can and being incredibly brave.

who knew ice chips could be so good

She got to have some ice chips and they've given her something to help her sleep.  She seems to be resting comfortably for now.  Her oxygen is still being monitored from her finger but they took the tubes out of her nose.  They are rechecking her hemoglobin in a few hours to determine if she will need a blood transfusion tonight.  Right now they are collecting the blood she is losing, filtering it and then giving it back to her.

Julia with a gift for Kate from the gift shop

Kate asked to hold it while she sleeps

the worst is over

We are with Kate in her room in the children's wing of the ICU.  She is swollen from surgery, thirsty and in a lot of pain but overall doing well.  Her heart rate is a bit high because of her hemoglobin levels but it is in the normal parameters expected after a surgery of this caliber.  They are still working to control her pain and get her comfortable and luckily she is sleeping most of the time so she's doing ok.   I'm hoping tomorrow I'll be able to read all the comments posted on her blog to her.  She really enjoys them and they help her stay strong. 


She told me the nurse gave her ice chips so I asked for some for her only to find out she can't have them and hasn't had them.  She is so thirsty she is dreaming that the nurses are giving them to her.  Hopefully she can have some real ones soon.

hour six

Kate is in recovery and doing as expected.  She is in quite a bit of pain but they 

have given her something for it.   She is awake and everything went well but she is not talking yet.  I will be called back to sit with her in the recovery room in a few minutes so she sees me and isn't scared when she wakes up all the way.  I'll post again once we get into her room in the ICU.

hour five

one of these things just doesn't belong here,
one of these things just isn't the same ...

Passing the time waiting for the next update from the doctor by making fun of my dad, known to Kate as Pa Pa B. Check out how everyone is passing the time but him.

 laptop, laptop, laptop, iPad ... paper & pen : )

hour four

Kate is stable.  

They have started attaching the rods to her spine and Dr. Akeson is satisfied with how the surgery is progressing.   

hour three

waiting ... 

No new updates from the operating room.  They use a status board, pager or call my cell to give the updates.  It's a great system but I'm anxious to hear what is going on and if she is doing ok.   Not knowing what is going on is painful.  I wonder if they lock the operating room door because I'd like to go back there and take a look, give a pep talk and make sure everyone is doing their absolute best to make sure my baby Kate is doing well.

hour two

Surgery has started