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.

Pres. Uchtdorf!

After a lazy morning, Mia and I went out to drive around and just be out of the apartment.  We ended driving up to This is the Place Heritage Park.  They are having a Christkindlmarkt.  It is a German tradition.  As we walked around the booths, we spotted President Uchtdorf!  I was very excited.  We said hello and shook his hand and I got Mia's picture with him!  So much fun!

 Oh, yeah, we also took a picture with Santa Claus.

 There are also some plaques honoring Utah Pioneers.  As I was looking at them for any names I might recognize, I came across Charles Wesley Shippen.  He is an ancestor on my mother's side.

More Waiting

Today at Mia's clinic appointment, her platelets were at 16.  They dropped one in two days.  So we know that she is producing platelets but not quite fast enough.  So we are staying for another clinic appointment on Monday.  We also have an appointment on Tuesday with Radiation at the Hunstsman Institute.  Apparently they do radiation depending on the cancer and whether they think it will do any good.  Our Bone Marrow Doc said that if we need radiation we could probably do it in Boise, but I am pretty sure he doesn't have the last word on it.  Instead it will be up to a Dr Poppy.

The weather has been pretty nice but Mia has no energy.  She didn't throw up at all yesterday or have any diarrhea.  She drank enough fluids and ate some.  The medication they gave her to increase her appetite seems to be working.  We are still on oxygen at night but I think it is getting a little better every day.

Yesterday we drove out to Magna.  We lived there when I was a kid.  We drove by the school where I went to first and part of Second grade.  Mike helped me figure out where the house was.  It all looks pretty much the same, only smaller and dingier.  The empty field at the end of the street is now someone's back yard.  The duplex had the same concrete wall in the back.

Just Waiting

Mia didn't leave the hospital on Wednesday but she did get out on Thursday.  She is on oxygen at night and TPN (IV nutrition) at night.  She went in on Saturday and received a transfusion of platelets.  We had another appointment today, fully expecting to need more platelets.  She didn't!  We will check again on Wednesday. If they are higher than today, 17, then she will be fully engraphed. Tonight is her last night for TPN.  She has been eating little tiny bits everyday, but not enough to supply her with enough calories.  She still throws up daily.  We are going to try letting her just eat normal.  The main thing is to keep her from losing any weight, and more importantly to keep her from getting dehydrated.  If we are not successful, then she will go back on a feeding tube. 

We loved having everyone here for a couple of days.  They arrived on Wednesday afternoon and left Saturday morning.  The only problem was that we couldn't actually do anything because Mia couldn't go anywhere.  As nice as it was to have everyone, I was happy to have some quiet when they left.  The very small apartment made for some close quarters.  Also knowing that it is only a couple more weeks makes it bearable.

 Nov 21.  Excited about going home

 Thanksgiving Day.  Ready to go home

 A card from CCI

 More presents

 Decorating Gingerbread Men, Heidi and Jessica

 Allan and Andrew

 Jessica

 Jessica, Heidi, and Mia

Hanging out today.

Day + 12

Yay!! Today was a good day! Mia's ANC was 600!  She was taken off of the pain meds.  She also took all of her medications by mouth!! She is leaving the hospital tomorrow!!  Also the doctor told us that we don't have to stay the whole 100 days.  Because Mia is doing so well and because she had an autologous transplant she can go home to Boise in about two weeks!  Yes TWO WEEKS!!   Sorry I didn't take a picture today.  Mia and I are excited to have everybody coming tomorrow.

Day + 10 and + 11

Nothing much is happening here. Sunday and Monday were both good days. She is well on her way to engraphing.   Monday Mia's ANC (absolute neutrophil count) was at 100.  It needs to be over 500 for two days in a row for her to have engraphed.  She is feeling a little down.  As her body begins to produce neutrophils, they begin doing what they are supposed to be doing, which is fight infection. The doctors say that sometimes that can make a person feel like they have the flu.  Monday we cut back her continuous pain medicine in half.  She is still on oxygen and everything else.  But every day we are getting closer to leaving the hospital.

Monday is craft show day.  Mia is making a turkey.

Day + 7, + 8, and + 9

Well the doctors tell us that we are a boring room!  Nothing very exciting happens here.  Mia's numbers are still down.  She received platelets on Friday and blood on Saturday.  This morning she has already received platelets and she will be getting more.

 Here she is doing some math.

On  Saturday Mia got a package.from a Eric, Krystal and Connor Rodgers.

 It was a book about One Direction!  She was really excited!  Thanks you so much for thinking of her.

Just happy and hanging out.

Mia's not having a problem with throwing up or diarrhea anymore.  She is still on IV nutrition (TPN), only two anti-nausea medicines, neupogen, one anti-fungal, and three antibiotics. Once her counts come back up we will try starting her on food again.

Day + 6

Another uneventful day here.  That is the way we like it.  Mia's neutriphils are at zero.  Her platelets and hemoglobin are also low.  She received both today.  She got her first dose of neupogen to help her numbers come back up.  Otherwise she is still on three anti-nausea medicines, a couple of antibiotics and an anti fungal.  She is still on IV nutrition although she did take a sip or two of Gatorade today and yesterday.  She still throws up a couple of times a day and diarrhea is a problem.  Mia however maintains good spirits.  She enjoys playing on my phone or the laptop, and coloring and painting.  Today she surprised me by cutting up some paper into little tiny bits and cutting up her balloon.  She was done with it :\

Day + 5

Mia is doing as well as can be expected.  Her numbers should bottom out today or tomorrow.  She had a good day today, spending much of the day sitting by the window. 

A big part of her care is taking care of her mouth.  Here she is with her nurse cleaning her mouth.  This generally leads to all kinds of gagging and throwing up.  However when she is done her color is better and her breathing sounds much better.

Today I took a break with some other parents.  It seems as though everyone here has a rare or unusual or tricky diagnosis.  I guess that makes sense.  I will admit that Mia's diagnosis is not encouraging, however I am so glad we are not dealing with some of the things the other parents are.  Mia's treatment seems to be going very well and seems to be working.  I am optimistic about the future.

Day + 3 and + 4

 Yesterday was Mia's worst day so far.  When I arrived she had just had some pain medicine because of  her mouth sores/mucusitus.  The medicine made made her kind of zone out.  We cut the dose the next time but then decided to put her on a PCA.  This gives her a small amount of medicine constantly and allows her to administer an additional dose as needed.  So far she hasn't needed the extra.  Since chemotherapy kills all rapidly growing cells it also kills cells in your mouth and all through the gastrointestinal tract.  It has caused her tongue to swell and so much pain that she can't eat at all.  She does throw up though and that is also painful.  Today she threw up twice.  We also found out today that Mia has C-Diff.  So they have added another antibiotic.

Mia finally started to feel a little better in the afternoon and sat in her chair for a while.

 These are five lines that she is hooked up to.

 Today the craft was a flying monkey from the Wizard of Oz.  Mia felt so much better today.  She got a unit of blood and one of platelets.

 Here she is painting.  After the painting she was not too interested in finishing so she had me help her with all the gluing.

 Here is the finished product.

 Mia loves to do crafts, so she asked child life to bring her another project.  This is a silly paper hat.The top stretches.

Mia wanted to sit up today.  I moved the rocking chair near the window so she could watch the construction and cars.  Mia is a people watcher.  She also played on the computer.  She never took a nap today and was still awake when I left this evening.

Day + 2

Today the doctor decided that it was time to start Mia on IV nutrition   She threw up this morning, hard enough that her tube came out. Later in the afternoon she was able to be unhooked from everything for a couple of hours.  She would have liked to go for a walk but she can't leave her room.  She gets tired of never seeing anything but her room.  She is already going to sleep when I leave at 6:30.

It started snowing yesterday morning and kept going through most of today.  Primary Children's sits up on the side of the mountain so we were surrounded by clouds.  Most of the time I couldn't see the University buildings a couple blocks away.

Day + 1

Mia had an okay night but this morning just after I arrived she threw up.  She threw up 3 times today.  She wants to go home and is having a hard time with the concept of two weeks.  We have a calendar to mark off the days and she seems to like that. Her numbers are starting to drop.  The next few days will probably be hard for her. This afternoon she had me hold her on the sofa for about an hour.  We just sat and snuggled.  

Today we made pins.  She helped me pick out the stickers and I did the lovely artwork!!.  Then child life came by and turned them into pins.

DAY ZERO!!!!! Bone Marrow Transplant Birthday!!!

Last night Casey arrived from Boise to surprise Mia for her special day.  This morning she was so happy to see him.  Last night she threw up several times causing her to throw up her feeding tube.  So the nurses took it out and she got to have a whole day without it.  She got a new one put in tonight before bed.  Because of her nausea she is getting higher doses of her anti nausea medicines tonight.

 Here they are together playing a game on Nickelodeon.  Mia enjoys playing some computer games.

 Mia got to have a nice shower completely unhooked from her IV pole.

 Here we are getting cosy!

 Hugs and kisses!

 Finally 3:00 pm and transplant time.  Her stem cells arrive from cold storage.  They are transported at negative 315 degrees  in the container below.

 For the party lots of doctors and nurses came in to sing for us.  Mia  now has a new birthday.

 A sign to decorate her room.

 Doctor in training , Kristen our social worker, Dr. McManus, Hillary child life specialist, and Brenda one of the BMT nurse practitioners.   Mia got presents for her birthday.  The quilt was one a young man made and donated for his Eagle project.  Hospitals receive lots of small baby quilts but they do not get very many large quilts.  They can always use more large quilts.

 Caitlin, our nurse for the day.  She was wonderful and we hope we get her again.  She is holding one of the two bags of stem cells.

This is the small metal container that held her stem cells.

The stem cells are kept frozen until just moments before they are transfused.  Then they defrosted in a high tech manner, warm water in a bowl.

 Hillary writes backwards very nicely.  Mia's door window now says "Happy BMT Birthday Mia!"

 It was a long day.  Mia was worn out by 5pm.  And it was time for daddy to start home for Boise.

We were both so glad to have him for a few hours.  We miss the whole family.  But every day is a day closer to our coming home.  Plus Doctor McManus said that is possible we could go home a little earlier than 100 days if everything is going well.  I am not planning on anything less than 100 days though which makes it February 16, 2013.

Here is everyone singing to Mia!