Christmas!!!

On Monday, Christmas Eve, we were very excited to find out that Mia was ready to come home.  It was a little unexpected but we weren't about to complain!  So we got Mia home and all settled in.  We had a very nice Christmas but didn't take many pictures.  We are worse now about taking pictures than when we used our big camera with film.

 Everyone is waiting to start opening gifts on Christmas morning.  Heidi, Jessica, Mia, Casey

 Allan and Andrew

Heidi with her two favorite presents, an American Girl doll and a new outfit.

Late on Christmas night I was preparing to give Mia one of her nine medications when I realized that I had misread the dosage on her med and I was giving her more than two times the dose.  As I was trying to decide if I needed to call the doctor I noticed that her oxygen saturation level was not staying up and that her heart rate while she was sleeping was at 160.  So I called the doctor and we headed back to the hospital at midnight.  The medication may have contributed, but also Mia's movement and activity during the day were probably just too much for her heart.  After another x-ray and echo and her condition has not changed.  She is on three to four liters of oxygen during the day and at night.  She is stable and we don't know when she will come home from the hospital this time.

Still Hanging Out At St Luke's Childrens' Hospital

Thursday night Mia had a hard time.  While she was sound asleep her heart rate kept going up.   She had a CT scan to make sure she didn't have a pulmonary blood clot.  There was nothing .  Later in the afternoon she had another echo to check her heart.  So far I haven't heard anything.  I am a little surprised that we haven't heard anything, but in this case we are assuming that no news is good news. On Friday Mia and I started to go for a walk only to have her heart rate get into the 170's before we had gone very far.  She was pretty upset because we had to return to her room.  Her room is boring she says.  Later that day the nurses got her a wheelchair. So Friday night Dad pushed her all around.  She really likes to get out of her room.

Better News

So Mia had another echo on Saturday.  That echo showed no change in Mia's Heart function.  It wasn't worse but it was no better.  So the doctors were not too thrilled.  Because there is no clear answer as to why her heart failure happened, the doctors had no idea what we could could expect as far as her heart recovering.  There was even some speculation that her heart function may never get better.  So Doctor Derek said we could expect to be in the hospital for two to four weeks, while we wait for the medications to give her heart a chance to recover from whatever happened.  In the meantime, they would continue to wean her off the milrinone onto other heart medications.  Once she was off the milrinone she would have another echo to see if there was any change.  This echo happened on Wednesday morning.  To everyone's surprise Mia's heart function had improved considerably!!!  It is not perfect but it is  close to what it was before her bone marrow transplant.  She is now out of ICU.  She feels pretty good, but gets very tired.

 Dec 11 2012 just after she was taken off the ventilator!

Thursday Dec 13 2012

 Decorating sugar cookies Jessica and Heidi.  I took some cookies to Mia in the hospital and she decorated them.  For some reason I can't get pictures off my phone! 

 Jessica helped me deliver some goody plates. It was so much fun to watch her.  She took the plates all by herself, wore the Santa hat, and told everyone Merry Christmas!  She had a huge smile!! It made my day!

Heidi's been in a choir at school.  She had a performance yesterday.  They all did great!!

Little Change

Yesterday Mia was put on a heart medicine called milrinone.  This medicine is supposed to help relax her heart and help it beat stronger and supposed to help dilate the blood vessels in the lungs.  We first thought that the lungs were the main problem causing some smaller issues with the heart.  Now the thought is that the heart is the real issue.  There is still no evidence of any infection.  The prevailing thought is that her heart failure is due to her chemotherapy regimen.  The goal yesterday was to get her off the ventilator.  It didn't happen.  We hope that will happen today.  She should be able to breathe without it, just on a nose cannula for oxygen.  However she is getting nitrus oxide through her breathing tube.  This medicine/ therapy is helping the pressure in her lungs.  Last night after the nitrus oxide was turned off her heart rate jumped up to the high 180's.  That is apparently considered heart failure.  So she went back on the nitrus.

Today she will start getting another IV medicine that should take the place of the nitrus.  After a couple of doses we will try turning off the nitrus and see how her heart does.  Mia is on a steroid to help with possible inflammation, a couple of antibiotics and an anti fungal just in case it is an infection, the milrinone, a feeding tube, her breathing tube with the nitrus oxide and oxygen.  She was able to have the catheter removed yesterday and so she was very pleased with that.  However since she is on lasix, a diaretic, she has to get up to use the commode regularly.  That is quite a production!.

The plan, as of this morning, is to continue to support her heart function with drugs.  She will be in the ICU until the end of this week at least.  Since we don't know the underlying cause we are in a waiting pattern.  The doctor does believe that there is no permanent damage to her heart and with time her body will heal.

Recent Events

The last few days have been anything but boring.  Mia left Primary Childrens on half a liter of oxygen just at night.  This seemed to be working well and her oxygen saturation levels were staying above the desired 90% just fine.  However Wednesday night I had to turn up the oxygen to keep her above 90%.  Then Thursday night it was worse.  When she got up on Friday I noticed that she was having a hard time breathing, she had a rapid heart rate and she was tired.  We had an appointment that day and she was later admitted to the hospital.  Her breathing continued to deteriorate.   Because we are not sure what is going on, this morning she had a procedure where a pulmonologist put a small amount of saline in her lungs and then suctioned it out again along with some stuff from her lungs.  They did this so they can test for infections.  Afterwards and Echo was done.  This showed that the left side of her heart has decreased activity, while the right side is much too large.  She also had a problem with her blood pressure being too low most of the day.  She has been on an epinephrine drip for that. Because the right side of her heart is large they thought that maybe she had a pulmonary embolism.  A CT scan ruled that out.  That is good, but it would have explained her symptoms.  

At this point we know that Mia has pulmonary hypertension.  We do not know why.  There are several possible explanations, and the doctors are doing their best to determine what is actually happening.  There are no plans right now to send her back to Salt Lake. In the meantime, Mia was intubated this morning.  She is in ICU. She is on too many drugs for me to keep track of.  The one thing that bothers her the most is the catheter.  She is pretty sick.  I am glad that we are able to be in Boise.

A Birthday Surprise!

Mia had a clinic appointment yesterday.  There we learned that her platelets are still going down.  She was 14 but she did not get a transfusion.  She also is losing a little weight.  So the doctor said we had to be going the other direction for both those things.  All day I kept thinking "why can't we do this in Boise?"  She can get platelets in Boise and we can watch her weight in Boise.  In fact I can probably feed her better when we are home.  So this morning I called and left a message for the nurse practitioner.  I just said that I wanted to talk about getting out of here a little faster.  She called and said we could go home!!  Because today is Casey's birthday we decided to make it a surprise and not tell him that we were coming.  We hurried and packed and cleaned the apartment.  We made it home just before 7pm.  He was SO surprised.  It was great.  Of course Mia and I are thrilled to be home.  Now we just need to get Jessica home from La Grande and we will all be together again.  Sorry no picture.  We were just all so happy to be together we didn't get a picture.