Heading home...

Sorry for the lack of posting! Wednesday afternoon we were able to head up to the floor for continued healing. The night before, the doctors had put her back on C-Pap at night, even though she was down to 2 liters of oxygen during the day. They wanted to be cautious about making sure she got extra help during the night, so that she could do better during the day. C-Pap did not go well and she was very upset about the whole thing. So, Wednesday night they decided to put her on high flow oxygen, instead of C-Pap.  Unfortunately (or I guess fortunately), that didn't go well either!  I think because she was too well to need the high flow, it was just super annoying to her.  So, Thursday morning during rounds the doctors decided we could take her off of oxygen all together and see how she did. Well, she did fabulously! She saturated in the high 90s all day and even throughout the night as she slept.  So, Friday the docs decided that there was really no reason to keep her in the hospital! So, on the 13th day of her stay, we were finally released to go home.  We have spent the last day and a half at Bev's house, just to make sure that Carla is well enough to travel and, tomorrow we will start making our way home. It has been a very long couple of weeks and we cannot wait to get home! We are going to keep Carla home from school at least through the rest of the month. We want to make sure she has reserves built up so that this doesn't happen again if she catches another cold. This whole experience was so scary, and she went from being perfectly fine, to being on death's doorstep in the matter of hours! Crazy.

At this point, we are working hard at taking care of Carla's mental health. This has been an extremely difficult time for her and she needs to feel like she has some control of her life back. It has been so much for a little girl to go through. She is such a brave, strong, little girl, but even the strongest child is still a child, and she needs to feel safe and happy again. And, that's going to take some healing... I'm sure lots of hugs, kisses and patience will do the trick.

Wednesday afternoon, moving to the floor!

Thursday, off her oxygen and out on a ride to boost moral. 

Friday, getting released!

As soon as their was no-one to bug her, she was able to fall asleep. 

Feeling happy, Saturday morning at Bev's house. 
Please pray for continued healing and happiness.  

Love, Jen


November 7th, CICU day 10

Carla has had a really good day so far.  Last night around 10:15 p.m., the doctors decided that it was imperative to take out her central line (because it's an infection risk) and to put in an IV.  They also said we could discontinue night feeds and take out her feeding tube. Carla was most anxious about removing the feeding tube, because she thought it would hurt. So, we left that alone and did the other stuff right before bed.  We were all exhausted! Our nurse knew we didn't sleep well the night before, so she was really good about making sure we had a quiet night's rest. Also, the docs decided that Carla didn't need to get vest treatments around the clock, so they didn't bother us last night either! I think we both got a good 4 to 6 hours of uninterrupted sleep! It was awesome! This morning, Carla was up at the crack of dawn, and so we got a bit of a jump start on the day. X-ray came and I ordered her a bunch of food from the cafeteria. Her chest x-ray looked much improved and she ate about 1 bite of everything and then told me she was full. At 8:30, the nurse came to draw labs from the new IV, and the darned thing would not give out any blood. So, we did have to get a phlebotomist in to give her a poke for her labs. After that, Carla took her meds and when the doctors did rounds they decided we could go down on her oxygen to 8 liters and then just put her on CPap at night, instead of BiPap. We also decided that it was time to pull the feeding tube. Carla had been gagging and even thew up a little bit this morning, so we decided enough was enough.  When it finally happened Carla was shocked at how easy it was, and felt silly for not letting them pull it sooner.  She also has been feeling so much more like her old self since pulling it. We ordered Chinese food again and when we were waiting for it to arrive, the occupational therapist came and did some work with Carla. Later on a couple of pulmonologists came and evaluated her as well. Yesterday, Bobby headed over to Guitar Center and picked up a ukulele.  He was excited about doing that because: 1) he didn't have a ukulele and 2) Carla LOVES music therapy. This morning/afternoon he's been learning and playing songs while we all sing together.  It has been so much fun! Definitely medicine for the soul. Carla received a package from Auntie Jeannette and Uncle Bill this morning as well. She was excited to open up a sketch pad and some colored pencils! She loves to sketch in her free time, so that was a great gift.

Right now, Carla is taking a well deserved nap. It has been a very busy day and will probably be a long night, so I'm glad she's resting. Here's to continued healing.

Love, Jen

After getting her feeding tube pulled

Thank you Auntie Jeannette and Uncle Bill!

Happy girl :)

Being super silly

Carla's Daddy is her music therapy hero today :)

Feeling happy while listening to Daddy play the ukulele 


November 6th, CICU day 9

Carla had another busy CICU night and woke up pretty crabby about the fact that she can't be left alone to sleep. At one time in the night she yelled at the RT that she "just wants to sleep!" I feel the same way, but that's not how it works in the CICU. Right now she is getting around the clock vest treatments every 4 hours and has inhaled breathing treatments every 8 hours.  So, midnight and 4:00 a.m. are both treatment times. And, after her 4:00 a.m. treatment this morning came her 4:30 a.m. chest x-ray.  Needless to say, she was not happy. Her nurse was also one of those kinds of nurses that insisted on coming in every hour for about 15 minutes an hour, taking vitals and farting with Carla.  I wanted to murderize her. But, today is a new day, and it has, for the most part, been a good day.

Carla was up and in a chair by about 6:00 this morning. When they did rounds they said that she could be put on 15 liters of high flow oxygen and that she could eat however much and whatever she wants today. They will put her back on BiPap for bedtime, but she can do high flow all day. Also, they talked about giving her an echo and if that looks good, taking out her central line.  When the RT came after rounds to change her over to high flow, do breathing treatments, and a vest treatment, Carla was about to have a melt down. Luckily, we had a patient RT and so when I asked if she could give us a few minutes to let Carla collect herself, she didn't make it a big deal. Later on in the morning, music therapy showed up!  He was our hero of the day, because Carla absolutely LOVES music therapy. He had her singing, shaking egg shakers and playing a little drum.  It was so cool for her and she never smiles more in the hospital than when music therapy comes. After music therapy Carla was tired and so took a little nappy. While she napped we ordered her favorite Chinese food in Seattle. So, upon waking Carla ate some Yummy Cafe! That also made her very happy. What didn't make her happy was that the physical therapist came and made her take a much longer walk than she wanted. Carla cried and complained of back pain, which is the pneumonia. I felt really bad about it, but it's supposed to help her get better :(

Right now, Carla is watching Good Mythical Morning, while getting her echo. She should be getting another vest treatment here soon as well. The doctor popped in and I asked him if it was necessary for her to be getting x-rays at 4:00 in the morning.  He said we could do it later, so I am going to be all over telling the night nurse about that. I am hoping that her x-ray tomorrow looks good enough to transition her to a regular flow oxygen cannula. I am so incredibly ready to blow this popsicle stand. But, at the same time, scared that Carla will not be well enough. The infectious disease team popped over earlier and said that they are increasing one of her IV antibiotics to 14 days, instead of 10. That would keep us here until Saturday, if they wanted to keep doing it IV. They did say that they could transition to oral meds, so that's what I am hoping for.

Bobby really needs to get back home by the end of this next weekend.  So, if we aren't ready to leave yet, he will have to leave without us and we will have to figure something out. On top of that, I'm kind of scared of going all the way home... But, honestly, I do get that way. Hopefully by the time it is actually time to leave, I will be ready. Otherwise, we will figure something out.

Hoping your day is happy and well!

Love, Jen

Yesterday, getting settled into our new room. 

This morning, trying out high flow.

Music Therapy makes Carla smile. 

Having fun with the egg shakers. 


November 5th, Day 8 of the CICU

Good morning from Seattle Children's Hospital!  Carla has had a better couple of days and is clearly on the mend. Her left lung is still battling the pneumonia and is somewhat collapsed, but still doing much better than before. Today we are doing "Breaks to CPap".  Meaning they are turning her machine settings from BiPap, to CPap and seeing  how she does. If that goes well we will do "breaks to high flow".  Once she is on just high flow they will eventually transition her to regular oxygen. On high flow or regular oxygen, she can get the feeding tube out of her nose and be able to eat and take her meds orally.  Today we are also planning on doing two to three walks, turning off her Milrinone (medicine that helps the heart) and to see how she does with Jello and the like. We will be moving to a different room in the CICU, because they need this room for a kid that will be coming out of surgery later today. It's just a staffing thing, so no big deal. Our new room is basically the same, but a mirror version.  I would be surprised if they didn't transition us to the floor tomorrow or the next day. In my mind I see us getting out of here Wednesday, but that's just an educated guess. I know that she will need to be here through Tuesday, because of her IV antibiotics. One of the good things about Carla off the Milrinone is that she will no longer need a central line. So, they will be able to take the monstrosity of a line out of her groin area and transition to just a regular IV in the hand. Once that happens they will have to draw labs via a poke in the arm, so that's a draw back.  But, getting that big line out of her groin area will I'm sure be a lot more comfortable for her.

This morning Carla woke up in a good mood and asked to sit up and watch Good Mythical Morning (one of her favorite shows). She continued to be in a good mood and hasn't yelled at anyone all day! I also haven't cried or yelled at anyone today! So, things are good ;)

Thank you for your thoughts and prayers,

Love, Jen


November 3rd, CICU day 6

Today was quite a whirlwind of emotions and hard work. This morning during rounds the doctors thought that Carla's x-ray not only didn't look improved, but actually looked worse. They decided that they would do another at 2:00, but that if her x-ray didn't look improved that they wanted to intubate her.  Of course, this was alarming and very upsetting, because getting off of intubation can sometimes be difficult and would definitely be a step in the wrong direction.  But, if it helped to inflate her lungs better, we would have to do it. The doctors wanted us to stay busy today and see how the x-ray looked this afternoon.  So, this morning Carla had two vest treatments (and inhalers); two x-rays, art therapy; a massage; she went potty twice; went for a walk and sat up in a chair for awhile. Her second x-ray did seem to show slight improvement, so they did decide that they were going to keep her extubated and increase the amount of support that she is getting from her Bipap machine. Right now she is sleeping and we are also exhausted.  I am confident that if we keep up all the vest treatments as well as having her up and around more, that she will get better.  Her infection markers have come significantly down, so that is definitely reassuring. I personally don't think that we will need to intubate to get her well, and we are honestly seeing lots of improvements with her health... Her lungs are just late to the party!

Here are a couple of pictures from last night and today!  Please pray for Carla's continued healing.

Love, Jen

Yesterday, sitting up in a chair, watching one of her favorite You Tubers. 

Carla wanted to take this picture and send it out to you all :)

Daddy is a spoiler.  Carla got a Nintendo Switch and a couple of games yesterday.  She loves it!

Taking a walk is hard when you have so much attached to you, but we were able to get it done today. 

Art Therapy

Carla, sending her love <3 br="">


November 2nd, CICU day 5

Carla had a pretty good night last night.  She got good sleep and did 3 rounds of Respiratory Therapy throughout the night. During therapy she watched Good Mythical Morning while they pounded on her chest, and that helped a little bit.  This morning her chest x-ray looks a titch better, but it all just takes time.

I spoke with the infectious disease team yesterday and they said that the IV antibiotic was a 10 day course (and she was on day 4) so I know that the soonest we could get out of here would be by next Wednesday.  Of course, that's if everything goes perfectly, so, I'm not going to be holding my breath.  Bobby and I had a meeting with the team of ICU and Transplant doctors yesterday afternoon. We were feeling some frustration so it was good to let them know what kind of communication we expect and what they can do to help this process be less frustrating for us.  I feel like the meeting helped my mental well being.  And we can see that they are holding up their end of the deal, by keeping us in the loop quite a bit better.

During rounds they decided today will pretty much be more of the same as yesterday.  We will try to get Carla out of bed as much as she will tolerate because that is what we can do to help clear her lungs. I am hoping the feeding tube will not be in her for too long, because it is miserable for her (she has a very sensitive gag reflex) but I don't think they will want to remove it until they think she can sufficiently eat enough food to keep herself nourished.  Bobby and I both got better sleep last night.

Carla is currently sitting in a chair, watching YouTube (her favorite pastime). She has a lot more strength than even yesterday, but sitting up in a chair does wear her out for sure.  Even though it is slow, we see her get stronger every day, so that is encouraging.

Love, Jen


November 1st, CICU Day 4

Over the last couple of days Carla's situation has improved in some ways and gotten worse in others. Her heart rate, blood pressure, kidney function, respiratory rate and overall strength have improved.  But, her lung x-ray has gotten worse. So, she teeters on the edge of needing to be intubated, which means they want to keep her stomach empty.  But, nourishment helps with healing, so now they have decided to place a feeding tube in and make it go just past her stomach. This way, she can get nourishment, but if things take a turn for the worse, chances of her aspirating and having even bigger problems are avoided.  The other plan for today has been to get her out of bed and sitting up.  Because, believe it or not, laying down when your lungs are wet can make things even worse. Currently, Carla is sitting in a chair, watching youtube and trying to keep her eyes open. She seems to have gotten her nights and days mixed up (I think because when you close your eyes in the hospital, some of the people will leave you alone). At night they don't bug you as much, so being awake in the middle of the night makes better sense.  

I have included a few pictures, a couple from Saturday, as well as the pictures we have taken since Sunday. I continue to be in a state of shock at how she could be doing so well, followed by so extremely crappy in such a very short period of time...

Saturday, carving pumpkins.

Carla and I did this Freddy Fazbear pumpkin

This cute picture was actually taken last week, on picture day.  

Sunday, getting all loaded up to be Mercy Flighted to Seattle. She was on 15 liters of oxygen and saturating around 85%

On the tiny Mercy Flight

Sunday, getting settled at Children's.  They used this face bipap mask when we very first got here. 

After a little while, they changed her to this Bipap cannula.

Yesterday she got out of bed for the first time.  It was EXTREMELY EXHAUSTING. 

She got a popsicle for her trouble. 

Yesterday also brought by the music therapy person.  This was her first smile in days. 
Currently, Carla is sitting up and on the computer.  It is very tiring, but we are happy to get her out of the bed and it will be so good for her lungs. 


Admitted to the CICU

Hi guys, well, I guess we all kind of suspected that something was going on with Carla, because of her labs being on the rise. But, on Saturday when she was carving pumpkins, going to a BBQ and then riding around looking at Halloween decorations we would have never thought that Sunday morning she would be in the Emergency room waiting to be Mercy Flighted to Seattle for a stay in the Cardiac ICU.

It all happened so quick it is kind of a blur.  Sunday morning around midnight Carla came crying to my room and said that she felt miserable.  I went to her bed with her, gave her meds to break her fever and suspected that she had caught the dreaded flu bug that has been going around the school.  By Sunday morning she was looking very dusky and having a difficult time breathing (to the point that she couldn't eat breakfast because she couldn't eat and breathe). We took her to the Great Falls Clinic Emergency room and expected to just need some oxygen for a night or two.  So, when the docs said that she had pneumonia and that she needed to be Mercy flighted to Seattle Children's Hospital, I was actually in a bit of shock. Then, when we got here and there were about 25 doctors rushing around her emergency room figuring how to stabilize her, I was even more overwhelmed.  The big problem last night was that her chest x-ray showed pneumonia as well as a plural effusion and she couldn't keep her oxygen level above 90 without significant help.  So, they ended up putting her on bipap, which forces air into the lungs. She had been on bipap when she almost died from plastic bronchitis.  I can tell you that she doesn't like it any more now than she did then. And, she especially doesn't like to not be able to eat or drink.  They have been scared to let her eat and drink for 2 reasons: 1) because she has so much forced air going into her lungs that it would be very easy to aspirate; and 2) she is so sick that she could go either way, so they want her tummy empty just in case they need to intubate her.

She did not sleep a wink last night and pretty much spend every waking hour begging for water literally like a drug addict would beg for another fix.  She was bartering, begging, and unrelenting.  The more she didn't get her way, the more angry and mean she became.  Which in turn made me upset and angry.  I honestly feel sorry for the nurses who had to deal with us.

This morning during rounds the team said that her kidney function was an issue and that her X-ray looked worse than yesterday.  She hadn't peed at all and they were talking about possibly having to use dialysis.  Of course, after no sleep and minimal food for two days, I ended up breaking down, giving the team my two cents and then crying like a mother watching her baby suffer.  It was not one of my finer moments, but we all have a breaking point, and this was mine.  Between the shock of how sick she is, the lack of sleep and the fact that she just seems to be getting worse, I just broke.

They did talk me into leaving and eating, as well as taking a shower.  And, I feel much better (but still tired). I should be sleeping now, but wanted to update, so here I am. This afternoon she has peed quite a bit, so I think the turn around is beginning.  She has actually been sleeping a lot more too, which is good.  She is still very sick, and Bobby is on his way to be with us.  Please pray that Carla get's well soon and that she can start being her happy little self.

Love, Jen


Checking in...

Hello to everyone!  Things around here are going pretty well.  Even though I was worried about the roads the other week, we made it home safe and sound from Missoula.  I was pleasantly surprised that there wasn't even any snow on the roads, they were just wet.  We have to go back at the end of the month, so I am hoping for good weather then. I had actually called and asked if the appointment was necessary (because we have seen Dr. Sticka twice since the end of September) BUT, they think it is necessary, so we will go.  I really don't like driving all the way to Missoula, having a two hour appointment and then making the 3 hour drive home, so we will most likely spend the night either the night before or the night after her appointment.  I know, we're spoiled.   But, it's just so much nicer for us that way.

Bobby's "little brother" Thomas had his birthday on the 9th, so we had a nice celebration for him the Sunday before.  Bobby, Tammy and I are all on a weight loss program, so we got creative with the side dishes.  There was mashed cauliflower, sautéed zucchini and squash as well as baked acorn squash and a fruit tray. It was kind of a practice run for Thanksgiving... We also had the less healthy varieties of food as well.  But, it was fun to be able to not feel like we were sacrificing anything, even though we were eating healthy food. It was a really fun time, we always enjoy when the "kids" come over.  I am looking forward to seeing everyone again on Thanksgiving.

Carla has missed some school due to the flu and strep throat going around in her classrooms.  We keep her home as a precaution.  I'm sure you can imagine how much that breaks her heart ;). Last week though, she did pick up a bit of a cold. So, she spent a couple of days in her bed.  We picked up an adjustable bed base off of Craigslist for her the other month, so it is nice that she can sit up in bed and read, play her games, or watch youtube. I also like that she can sleep with her head up a little bit, I feel like it's better for her, with all the phlegm she's constantly struggling with.  I wish so badly that it would just go away, because it feels like she never gets a darned break!  But, at least she hasn't caught the flu or strep. So, we are lucky there.  And, we all did get our flu shots 3 or so weeks ago, so that's good.  

Last Friday, Carla had a dentist appointment in Helena. They told her how well she was brushing and how great her teeth look. She really felt like she had gotten away with something, because when she brushes, she doesn't spend the two minutes she should on her teeth. But, she does use a Sonicare toothbrush, so that's a testament to having a really good toothbrush! After her appointment we went over to my Dad & Sue's house and we all went out to lunch together, and then to visit Grandma Morgan. It was so nice to see my family, and Grandma was just as sweet as ever.  It's amazing to me how she can have Alzheimer's, but still remembers that she is such a sweetheart. She has always been the best Grandma I could have ever asked for or wanted in my life.  What a blessing. My Dad had a gig Friday night, so Carla and I went to most of that too. I love listening to my Dad play, and the songs they do take me back to childhood, listening to Dad and Uncle Dan sing and play the guitars while my Mom and Aunties harmonized. What great memories. Dancing with Carla, Sue and Andy is always a fun time as well.

Carla only has a 3 day week this week, so I am REALLY hoping that she can go all week.  But, I have been warned that 1 child in the 5th grade was out with the flu.  So, that may start making its rounds again, and we may have to keep her home again.  But, we will wait and see.  Her homeroom teacher is fabulous about keeping me advised of the illnesses going around.  So, she will let me know if she thinks Carla is at risk.  I sure do love her teacher.

Here are a couple of pictures from our adventures.  :)

Happy Birthday Thomas!  

Carla, looking cute before we left for Helena on Friday. 

Carla with her Uncle Andy. 

My Dad.  He and his band have been playing together for like 38 years or something! So fun to listen to them play. 
I hope this finds you happy and well!

Love, Jen


Silly labs...

At the beginning of September we did Carla's usual labs, and her BNP, which measures the amount of  stress the heart is under, was in the 700s.  Ideally, it should be under 100.  Carla's has always been a little bit high, but so long as it stays the same or doesn't trend upward, the team has been ok with it.  They asked us to repeat the lab in a couple of weeks, and when we did that, it was in the low 900s.  So, the team contacted Carla's cardiologist in Missoula, and we made a trip over the next day.  We repeated the lab a week later, and it was up to 995.  So, once again, the team contacted our cardiologist in Missoula, and we made another trip to Missoula.  At both appointments, Carla's echo looks pretty much unchanged from the echo that they did in July.  So, honestly, nobody knows why her BNP is up.  But, we will do labs again tomorrow and we have an appoint set to return to Missoula on October 30th.  I just hope the weather is good at the end of October.  It seems like every time we need to travel (we are 3 hours from Missoula) the damned snow decides to fly.  We decided to stay an extra day, because freak "blizzard like" conditions hit central Montana yesterday.  But, honestly, if we would have driven home yesterday we would probably have had better roads than we are going to have today, after they had a chance to freeze over night.  That was a dumb decision.  And honestly, I would just stay another night, because tomorrow will be in the 50s.  But I can't because I didn't bring enough meds!  Also, STUPID - I SHOULD KNOW BETTER!  Always bring extra meds!

Other than our frequent trips to Missoula, and to the lab, life has been pretty uneventful.  Carla has for the most part been able to go to school. We had our first snow and rain in the middle of September, and that finally got the fire season under control.  So, the air quality has been fabulous again! Thank God! This week the flu has hit Carla's class, so we will keep her home the rest of the week.  She did get her flu shot last Wednesday, but it takes a good 10 days to be helpful.  So, we will be safer than sorry.  She has labs tomorrow morning, and I will pick up her work, so we can do it at home.  I am honestly very impressed with how well she is doing in school, considering all the days she misses.  She got her mid-term report and she has two A minuses, one A plus and a B plus.  She and I work very hard at home to keep her caught up and so I am proud of us that she is doing so well.

I need to pack up our hotel room now and make the trip home!  I'm excited to get home to Bobby and for us to sleep in our own beds tonight!  Hotel living is fun for a day or two, but there really is no place like home!

Love, Jen