PICC line

I would post a picture of Odette and her PICC line, however somewhere between here and the hospital I have lost my USB cable and hence cannot transfer pictures for the moment.  Eventually I will get another one and then I will have a whole post of pictures, but until then I hope you don't mind a lot of words.

Before we came home from the hospital, Odette got a PICC line.(Peripherally Inserted Central Catheter)  She needed to get this to replace her central line that was removed due to infection.  It was suppose to be something that could be done "bedside" with minimal anesthesia.  However, Odette had the max dose of anesthesia and was still so wiggly that it was unable to be done. Since she maxed on the drugs, they had to wait until the next day to try again.  This time they took her to flouroscopy.  (No idea how to spell it, but it is where they use lights to see the veins.)  This time they were prepared for her and got it in quickly, even though she was still awake and moving.  Thank heavens!  Her poor arms look like they have been used as pin cushions.  (Oh wait, they had been-4 IVs and 4 days of blood draws!) 

The PICC line is temporary until it has been a few weeks of antibiotics to insure she doesn't get another infection with a new line.  It works the same way as her central line did.  We also need to decide, since she is older (I would say bigger, but she isn't) if we want another central line or a port.  A port would go under her skin and then she could play in the water all she wants and there is nothing for her to chew or pull on.  The downside is she would need to get poked to access her port at least once a week...there is numbing cream  though.  Right now, the PICC line is great.  I just cut a tube sock in half and pulled it over her arm and she doesn't even notice anything there!   Now our biggest problem is the diarrhea from all the antibiotics-2 antibiotics already for 10 days!  Her butt is struggling!  Thank heavens I have the greatest butt cream ever! (Thanks Dad)  I have tried 4 kinds of diapers and nothing seems to hold it in...the best are the Pampers Cruisers, but even they have their moments.  Oh well, once she is done ruining the carpet we can get hardwood floors!!

Half Way

We recently (yesterday) returned home from finishing our round of chemo that marked our half way point.  I know!  It seems that we have been at this forever and I know most of you are worn out from having extra children, cleaning my house and running my grocery errands for me.  (Aren't you thankful for winter because you haven't had to help take care of my yard for almost 4 months!)  It has taken us 8 months (well in two more days it will be) to get to this point.  Fortunately it shouldn't take us 8 months to finish up the second half of the treatment because it is the "easier" chemo.  (The doctors say easier, but after last week I don't know that I would agree with that.)  We should be home for all of the treatment except for another two week visit in April.  For this I am really excited.  Maybe we can actually be a family again and be done with this "divide and conquer" craziness.

 I have given up on counting how many transfusions and tube replacements Odette has had.  All I know is it is a lot and I am going to need to be donating blood as often as possible for the rest of my life!  I am just grateful that we have lived through stuff this far and are able to tell the tale of our fighting princess, who wakes up with a smile each and every morning.  (That is hard to do even without a lot of crap going on in life.)   I am thankful to all of you who have helped us make it this far.  It definitely isn't a short or easy road to walk on with us.  (If you get tired and need to take a break I completely understand! )  I am also very grateful for a supportive husband who tries hard to help me with all that Odette requires and all that I don't accomplish during the day and three other little kids that are trying hard to be patient.  I also am very thankful to a loving Heavenly Father who compensates for my weaknesses and gives me the strength I need to make it through every day when I usually don't have the energy to even get out of bed (or off the couch).

What do you LOVE?

 Odette loves her Valentine cupid nurse for the day.  He has actually been our nurse for 9 of our 14 days here!  I love that the nurses and staff here really love their jobs and work hard to make sure the kids stay here is as nice as possible. 

I LOVE: 

•  dark chocolate
• A Cinderella Story
• the song that says "Scatter Sunshine"
• BRIGHT colors
• childrens laughter
• Grandmas
• sewing
• a clean house
• sunflowers
• SMILES
• big trucks
• family near and far
• old friends and new friends
• Odette's wave
• Josselyn's lickery kisses
• Kathleen's love notes
• Brandt's sensitivity
• Kendall and his smile
• Our Savior

I love this scripture:

Love is patient, love is kind.
It does not envy, it does not boast,
it is not proud.
It is not rude, it is not self-seeking.
It is not easily angered,
it keeps no record of wrongs.
Love does not delight in evil,
but rejoices with the truth.
It always protects, always trusts,
always hopes, always perseveres.
Love never fails.
~I Corinthians 13:4-8~

What do you LOVE?

HAPPY VALENTINES DAY!!

Should have known

You would think that by now I would know that "the plans" that are presented each day to me by the doctors never go as they explain.  Instead of the plan like I talked about previously, this is what has been happening.

Odette got her central line out.  When she woke up from the surgery, she was right back to normal.  The nurses say she opened her eyes, sat up, started waving to everyone and talking away.  She instantly won the hearts of all the surgery team.  Instead of having a PICC line put in while she was out, they were only able to put in an IV.  This, was put in her hand, her thumb sucking hand.  So, once we were taken back to her room, which she doesn't like, she wanted to suck her thumb.  After screaming for half of the day, because the doctor thought she would just get used to it, I convinced them to change it to the other hand.  Once again we had happy baby Odette.  This was one where the poke was worth it!

Since she didn't get a PICC line, she has been rudely awoken each morning for blood draws.  You can not use the IV to draw blood.  It is only used to give her fluids and medicines.  They informed me that we were waiting to get the PICC line until her blood cultures came back negative for 48 hours.  This finally happened yesterday, so we were scheduled for this morning to get the new line placed.  I was so happy, Odette could quit being the human pin cushion!  However, this changed as well because they were unable to place the line because "she is too wiggly even with the anesthesia".  Personally I think the IV lady was just not the best for the job.

Now we are waiting to see when we can try again to get this line in, her counts to go up and then go home.  For my sanity and everyone else that resides at my house, I pray it is in the near future.  Probably Monday or Tuesday since her counts are zero, but then again, they are in dire need of some rooms so you never know!

The Plan

Odette is still growing things in her blood cultures, which means that somewhere the infection is "hiding".  This occurs when the infection is usually in the central line itself and the antibiotics are just pushed pasted it and that is not enough to get rid of it.  So here is the plan:

1. At 9:45 today she is scheduled to have her current central line removed.
2. Put in a PIC line.  This is just a temporary access in the arm so that Odette doesn't have to get poked each time a blood sample is needed or her antibiotics are administered (4 times a day).  
3. No growth in the blood cultures for 48 hours.
4. Put in a new central line after the blood cultures are clear-hopefully by Friday.
5. Monitor Odette for 24 hours.
6. Hope her blood counts start coming up.
7. Go home.  (I'm not going to jinx me in this department.)

I guess that it is a good thing that we did this chemo as inpatients!  What a crazy affair it has ended up being.  

I think I need a bigger bat!

One of my friends, who has a daughter with leukemia, found this quote.  I absolutely love it, not to mention that Dr. Seuss  is my favorite author ever.  He has a great way of saying things.  I hope you enjoy this one, I think it fits our situation.  I just wish we had a bigger bat!

 

"I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I've bought a big bat. I'm ready you see. Now my troubles are going to have trouble with me". Dr. Seuss

"One tough cookie"

Yesterday I learned that:

• Life is very precious.  Take advantaged of every moment you have to enjoy it and create good memories-you don't want to regret what you did or didn't do.
• Things can change in an instant, don't take anything for granted.
• Heavenly Father loves each of us individually and knows what we can handle and need to have happen to learn life's lessons.
• The nurses and doctors here at PCMC are amazing at what they do.
• Cancer still really SUCKS.
• Odette is a miracle.  She is one tough spirit that is a fighter! 

I guess that yesterday's post about infections was a little bit premature.  In the past, that is always how it had worked with infections.  Draw blood, start antibiotics, happy girl, go home and finish antibiotics.  However, my eyes were opened (big and wide) yesterday as I watched a nightmare unfold before my eyes.

Odette had gone down for her usual nap, so I was having "my time" reading, typing on the blog and staring at the wall, when I heard Odette grunting and breathing unusual.  I figured that she was just pooping-again-and I didn't want her to get a butt rash with all her chemo so I got up to change her.  (She does sleep through diaper changes-so nice!)  However, she was shaking uncontrolably-the nurses call it rigors-her skin was looking funny-marbled- her oxygen level dropped to 50 percent and her heartrate had soared to about 240.  (Normal heart rate for her is 120 to 160)  Of course I was paniking, but I did manage to push the nurse button and get out the words "she is shaking".  The nurse was completely calm as he called for the Doctors, got medicines, wrapped Odette in a warm blanket, hooked her up to oxygen and began taking blood pressures.  At this point, the room was swarming with people and my heart was racing.  I didn't really even notice the puke all over me and the floor.  I said a prayer and then a miracle happened-Odette calmed down and things started to return to normal.  Odette stopped shaking, started sucking her thumb and went back to sleep.

Later on a nurse and doctor came in to explain what had happened.  They had changed the antibiotic they were treating Odette's infection with and it was the right one.  It had actually broke down the bacteria and Odette had experienced a "toxin spray" from all the bacteria.  When this happens, her blood is toxic and so the body tries to protect its main organs and all the blood goes to the heart and brain causing everything that we saw.  Here is where the miracle happened.  Usually boluses of fluids are needed to help stabilize and help compensate for the blood being taken out of the extremities and since cancer kids don't have lots of abilities to "fix" things wrong in their body they end up in the PICU getting fluids and fighting for their life.  Odette didn't need any fluid and her body "fixed" the problem by itself.  Proof that Odette is "one tough cookie"!!

Infections

Just a reminder that this is "medicine according to my understanding".

This week while at the hospital, Odette developed a fever.  When a cancer patient gets a fever, that usually means that there is some type of infection in the body and since they don't have the immune system to combat infections it is important that what is causing the infection be figured out quickly so the correct medicine can be given.  The first thing that is done is a blood culture is drawn to test for the type of bacteria.  Instead of waiting to see what grows, an antibiotic is started.  They choose one that has a broad range of coverage.  For Odette we usually start Fortaz, Zosyn or Gentamyacin (remember I can't spell).  Sometimes, like this week, we start two of them.  Each day cultures are drawn until the cultures come back clean (not growing anything).  If there are enough positive days of growth, there is a chance that the central line is where the infection is residing and then that would have to be replaced.  They assure me that this doesn't happen all that often, but is a possibility.  Since they want to check if it is the line causing the problem, they will draw blood by "poking" Odette so that the blood doesn't travel through the line.  The antibiotics are usually continued for two weeks unless other issues arise (we pray that they don't).

For three days in a row this week, "stuff" has grown in her cultures and finally today we know what "bug" it is.  It is called Klebsiella pneumoniae- doesn't usually cause pneumonia. It is usually susceptible to the antibiotics we had started, but for some reason this time it isn't, so we have started a different antibiotic and hopefully the fevers will stop.  You wonder how on earth Odette would get such and infection?  I know I sometimes wonder to because the hospital is suppose to be "sterile".  However, most of the bacterias that make her sick are from herself.  They are the common flora of her body, but when her counts are low they move to places that they aren't commonly found and are not fought off because her body is incapable.  Hence she gets sick.  (Yes it is annoying because it doesn't matter how much you clean with Clorox, Lysol and Bleach, you can't protect her from herself.) 

It is funny, but you would never guess that Odette was sick with an infection.  She is laughing, playing, squealing and breaking her fluid lines.  She gives big loves to all the nurses and doctors and tries to leave the room in her walker every time the door opens.  She is one tough cookie.

Coping

I have been told two things over and over during the past several months.  One is, "one of the most stressful things in a marriage and family is having and/or caring for a sick child."  The second one is, "when under A LOT of stress we revert to behavior of a five year old child."  I agree with both of these 100 percent after seeing my life as I did yesterday.

With that said maybe some of you can more fully understand the high levels of anxiety, yelling, tears, whining, saying things that shouldn't be said and frustrations that reside at my home.  It is filled with a bunch of five year olds interacting with each other.  We are all trying our very best, but sometimes, to an outsider this very best might seem a little immature and even wrong.  Thank heavens for a loving Heavenly Father who understands each of our hearts and is the one to make the final judgment. 

I am sorry to any of you and more importantly to my own little family for my behavior.  Some days it is tears and sometimes it is "freak out" mode and sometimes I know I have said stuff that should be classified as unforgivable.  We all are trying to just survive and hold a little bit of happiness together and in our own methods, we cross paths and are hurtful. 

I love my family.  I know that Ken works so very hard for us, not because he likes to, but because he loves us and wants the world to be at our fingertips.  I know that each of my children love one another and their parents and I hope they know how much we love them.  When life calms down some, I pray that my coping mechanisms haven't ruined what mine and Ken's whole goal in life is-happiness together.

Home away from Home

We are back to our home away from home.  We returned yesterday afternoon.  While Odette was very happy to be greeted by all of her loving friends at the hospital, when the door shut to her room, she was very upset and I know she remembers what happens here.  This stay shouldn't be bad.  The doctor assures me that they usually do this treatment as out-patient, but since Odette has a poor track record of getting dehydrated (she is still the puke queen) and fevers the last time she got this treatment it is safest to be here.  I completely agree, but that doesn't make it any easier to be away from the rest of my family and sleeping on a pull out chair that is even worse than my living room floor! 

Obviously Odette didn't much notice that the sleeping arrangements were different.  She slept peacefully all  night, even through the diaper changes every two hours.  She also even attempted to eat some mashed potatoes!  She was kissing (licking the hospital window) all her friends in the hall.  I put some potatoes on the window and she cleaned them all off!  Silly girl.