4/14/14

Normal Life...

Our life has settled into a new normal.  Carla is doing well in school, has become more of a morning  person and we have been enjoying life.  The weather has finally been a little nicer, so we are going for walks a little bit and I can't get over the stamina she has!  Yesterday we went to a birthday party.  Watching her run, play and laugh with the other kids really did my heart good.  For so long we would have had to avoid other kids like the plague.  And, when she did get around them they were running circles around her.  She is still less aggressive than most kids her age, but that might just be her personality.  We only have one and a half months of Kindergarten left!  I think we will get her into the Xcell summer program so that she has some fun stuff to do this summer with her friends. I also want her to try out swimming lessons again :)

As far as health goes, Carla is still battling the cough she picked up at the tail end of February!  She has been on a 10 day course of antibiotics followed by a 21 day course of antibiotics and still can't kick it.  Last year she coughed from the middle of March through the middle of August.  So, I'm hoping the vocal cord procedure on June 9th does the trick and that she will be able to get the phlegm out!

That's all for now!

Love, Jen




4/3/14

Our Big Girl is 7!!!

As of yesterday, our sweet girl has made it to 7!

I can't believe she is 7, yet I feel as though I have aged in dog years...how is that!?  ;)

We kicked off the birthday week with a "friend" party at the Kid Fun Zone in Great Falls. The kids had a blast and I think the party was a pretty big success.  On Monday Carla had a class picture in the morning and then we rushed off for a blood draw in Great Falls.  We don't have those results yet but I'm sure they are fine.  Tuesday was a big day because it was the first day in 3 years that Carla didn't take Sildenafil!!!  Sildenafil is a heart/lung pressure drug that was started in March of 2011, after being diagnosed with Plastic Bronchitis.  It definitely helped her heart/lung pressures and therefore lessened the amount of casts she was producing. During Carla's 3 month biopsy her pressures were still high, so they kept her on the drug (it takes the body some time to adjust to transplant).  At her 1 year biopsy Carla's pressures were great, so on January 1 we started the weaning process, and March 31 was the last day of the drug.  Woo hoo!!!  She is now down to only transplant meds and supplements.  So, she takes Cyclosporine and Cellcept every 12 hours, magnesium 3 times a day and a probiotic 1 time a day.  I can't believe it!!!  

Yesterday was Carla's actual birthday, so she brought cupcakes to school and later in the day we had Bobby's family over for dinner, cupcakes and presents.  Bobby and I went on a little shopping adventure yesterday afternoon and bought Carla a bunch of new clothes for her birthday (I know, we are SO fun, right).  She has grown like a weed in the past year and we had to give away most of her clothes.  So, now she has a few more and that is great. Carla enjoyed her day and we will be getting together with my family on Sunday to continue the celebration!  We are so grateful to our donor family and remember them especially at times like these.

I am continuing to deal with scheduling Carla's vocal cord procedure and thus far it looks like it will happen on June 9th and then on June 12th we will see the Pulmonologist.   The ENT (Dr. Inglis) wants to see Carla a month after the procedure, so we will be back in Seattle most likely on July 9th for that.  We also have to do a cardiologist appointment at Children's in July, so we are working on getting those visits coordinated.  Sometimes I think it would be easier if we just moved to Seattle.

Here are some recent pictures from this past week's adventures.  :)

Love, Jen

Last Thursday was a beautiful evening, so we went for a walk and to the park.  Carla walked the furthest she ever has in her life!  12 Blocks without being winded or tired! 
Saturday we decided it was time for a little hair makeover :)

Ta da!!!

Before her party on Sunday

Getting an airbrush tattoo 
It's a butterfly!

Getting ready to blow out her candles!

Us girls

Our little Wright family (minus one). 

Loving on her Uncle Tom

We got her a game she has been asking for for months...

She was a tiny bit excited...

NintenDogs and Cats

Opening more presents... I just love her facial expressions.  :)

With her girlfriends from school :)  

Our big 7 year old, before school :)

Carla's new clothes :)

A Princess Peach car!

Opening presents ...

Excited about a Bingo game!

Blowing out her candle :)

:)
Feeling Blessed...

3/26/14

The plan thus far...

I spoke with Dr. Inglis last Friday about doing Carla's vocal cord procedure.  He said that he doesn't necessarily need to see her in clinic before doing the surgery, that he does his surgeries on Mondays and he would have his surgery scheduler get in touch with me.  Then, on Monday the sweet cardiology scheduler that I spoke with last Wednesday called to let me know that we can see Dr. Debley and Dr. Inglis on June 11th and 12th.  I asked her if that was for the surgery and she hadn't been advised about the fact that Dr. Inglis wanted to set her up for the surgery.  So, at this point we are keeping the appointment with Dr. Debley and waiting to see if Dr. Inglis can do her surgery during that same trip...  We should hear back from scheduling next week.  Things do not work fast in this business.

... Seattle Children's, teaching, patience, one hour at a time ...

This Sunday will be Carla's 7th Birthday party with her classmates. This will be her very first "friend" party and she is over joyed.  She made me promise that even if she gets sick, she could still go to her party.  So, in sickness or in health, we will be having a bouncy house tattoo party at the Kids Fun Zone on Sunday.  I can't wait :) and do promise to post pictures.

Love, Jen


3/20/14

Finally, some answers...

Ok, SO, Dr. Debly (the Pulmonologist (lung doctor) at Children's) gave me a call yesterday and had some very enlightening information!  After Carla's cardiologist e-mailed him on Monday he took a look at Carla's chart and realized that she had been diagnosed with a paralyzed vocal cord back in September (the last time we saw Debly was in June).  Dr. Debly explained to us that because Carla cannot clear phlegm very well what ends up happening is that it kind of just sits there and creates a bacterial infection!  This is why she ALWAYS NEEDS ANTIBIOTICS TO GET WELL if she gets a cold!!!  We understood that it was harder to clear her throat and that the paralyzed vocal cord is the reason she is so quiet.  But we didn't have that piece of information that it also causes her to have bacterial problems and can lead to a chronic bronchitis.  Oy.  So, now that we have THAT information, we are going to make another appointment with Dr. Ingls (the ENT) in Seattle hopefully on the same day as an appointment with Dr. Debly and get the ball rolling on scheduling the procedure where they plump up the paralyzed vocal cord so that the other one can push up against it better to make a louder voice and also push up against it better to produce a good cough.  The body really is a complicated machine.

Love, Jen

3/19/14

Heart Checkup

Saturday we were up bright and early to head back to Seattle for a Monday morning heart checkup. When we got there we spent some time with Bev and Carla was able to pull out her second tooth - all on her own!  She was so excited and luckily the Tooth Fairy was able to find her in Renton.

Carla must have picked up another cold and wasn't feeling well Friday night. Her heart rate was elevated (140), which made sleeping for me nearly impossible.  I kept checking and checking her heart rate.  She had a low fever and that always contributes to a high heart rate but 140 was a little hard for me to deal with.  Luckily, it eventually went down after I gave her some Tylenol. On Saturday she still wasn't feeling the best and so pretty much laid around all night.  Sunday we went to Puyallup to visit Jenny and Morgan.  Even though she wasn't 100% we just had to visit while we were so close.  Morgan is Carla's "favorite"  and they had a fun time together (as did Jenny and I).  
Monday we were up bright and early to face the Seattle commute!  We left Renton around 7:35 and made it to Seattle by 8:30... so half an hour early.  With the traffic you never know how long the commute is going to take, so it's always better to be safe rather than sorry.  First we did an echo, then we saw Dr. Sabrina Law.  I told her about Carla needing an antibiotic every time she gets sick and she decided that she wanted us to follow up with pulmonary (even though her lungs sound clear).  She is convinced that Carla's lungs are still compromised, so isn't comfortable with discharging us from pulmonary all together (as suggested by our local Pulmonologist).  I guess we will head back to Seattle for that when we can get in with Dr. Debly.  As far as a heart checkup goes, Carla's heart looks good.  Her labs were good, other than her BNP was a little elevated from the month before, but that can happen with a cold and Carla wasn't 100% when we did labs.  We will repeat in 2 weeks and hopefully she will be well by then!  We have been on a sildenafil ween since January and Carla is down to 5 mgs 3 times a day, she has had more headaches since we started the ween and so the docs want us to take her blood pressure a few times a week for the rest of this month (especially when she has a headache.)  Unfortunately we don't have a blood pressure cuff (and they were out) so they wanted us to use the school nurse.  The school nurse doesn't have one, so we'll have to figure something else out.  It's kind of annoying... sometimes I think the doctors get a little out of touch with what it's like to be a normal person and parent.  It's not like everyone just has medical equipment available to them.  But, I digress.  

We came home yesterday  - there is nothing like Home, Sweet, Home, and we are happy to be here.  Here are some pictures from the trip :)

Love, Jen





After pulling out her tooth and feeling proud.  Bev is holding the tooth.  

Eating ice cream :)


Bev gives a thumbs up to Carla :)

Carla not feeling well and being snuggly.

Crashed out on Grandma Bev.  

Jenny and I at Red Robin with the girls :)

Carla and her Morgan.  

Carla was crabby at Children's, so this is how I cheered her up... funny face selfies always do the trick.  

There's a smile!

Anyone who knows me recognizes the eye roll.  

Us girls.

Zeeks Pizza to celebrate!

After our appointment, enjoying the beautiful day!!! 

3/14/14

Life is Good :)

Night before last I awoke in the middle of the night and realized it was March 12th.  March 10th had come and gone and it didn't even occur to me to think about it being the 3rd anniversary of the night Carla's plastic bronchitis almost took her from us.  That night was the single most horrific night of my life, watching my baby suffocate and not being able to do anything but hold her tired body in my arms, turn up the oxygen, start a vest treatment and wait for the paramedics to arrive. After calling the ambulance Bobby called his folks and they came over for support.  I remember Bobby's Mom saying it's ok... it's ok...  and I'm pretty sure I yelled at her as I said "This is not ok!" and to be perfectly honest, I didn't think anything was ever going to be ok again.  I had Bobby go wake up Cody, because I wanted him to be able to say goodbye to his sister.  When the ambulance FINALLY arrived they loaded her up and called for a helicopter.  (I'm not sure why they didn't send one to begin with, we told 911 she was suffocating and it took half an hour for an ambulance to get here!)  They life flighted her to Benefis, intubated her and then life flighted her to Salt Lake.   This adventure started at about 1:00 a.m. and Bobby and I were on the road to Salt Lake by 5:00. On our way there we got a phone call that they needed to take Carla for a bronchial scope and needed our permission.  Of course we authorized it.  When we finally got there one of her lungs had collapsed, her blood pressure was weak and she needed another bronchial scope.  This is when the doctors started talking about a heart transplant.   Over the next few days Carla was at deaths door... at one time the resident CICU doctor told us that we couldn't continue on this way and that it wasn't fair to Carla.  Before they took Carla for another bronchial scope, the doc let us know that she may not make it through the procedure and that we should say goodbye to her.  I remember looking at that doctor and telling her that it was God's decision whether or not Carla lived or died, but that I believed she was going to live.  I thank God so much not taking her.  Instead, he sent an angel to us.  That angel was in the form of a male nurse named Bryan.  Bryan told us that he didn't think it was time to give up on Carla just yet and if he had to bag her all night long (use a bag to breathe for her), that's what he would do.  Carla was intubated for the next month and spent her 4th birthday in the hospital.  After 9 weeks we were released from the hospital...  Six months later we had Carla evaluated at Seattle Children's and ended up changing transplant hospitals so that we could wait for her heart in Seattle, instead of Salt Lake... and after being in Seattle for 13 days shy of a year we finally got the call that Carla's perfect heart match had been found.  Flash forward one year and four months... Carla is doing better than she has been in her whole life!  She is about to turn seven and is pretty much just like the other kids her age.  Yes, she has to take medicine every day and yes, she has to travel for cardio appointments every other month, and do monthly labs. But otherwise, she is all good and we are finally able to feel like a "normal" family.  The fact that March 10th passed without us remembering is a huge sign -  Life has taken a turn for the better and we are soaking it all in.

Love, Jen

March 12, 2011... 

Bobby, Carla and our forever favorite nurse and angel, Bryan :)

Carla, this past weekend with her favorite princess, Peach.  :)  

3/2/14

Burr...

We (and everyone else in Great Falls) took Carla to the Lego movie on President's Day.  She ended up picking up a cold... Boo! She has officially been sick for 1 week (7 days) and is on antibiotics to combat a super thick sounding cough.  We gave her 3 days before seeing the doctor, but since she was fighting fevers and not getting better we had to take her in for an antibiotic.  This is pretty much par for the course with her being on the anti-rejection meds.  Every time she gets sick, she needs an antibiotic.  I'm just thankful that she went almost 2 months without a cold.   

We have pretty much stayed home and in snuggle mode.  Which, is also good because the weather has been atrocious!  Snow, snow and more snow... followed by subzero temperatures.  Yuck!  It's times like this that I miss Seattle in March.  It was so beautiful and full of flowers... This was taken on March 9th last year in Seattle...  



And this, was taken yesterday...

Yuck!  

Here's to hoping for warmer weather soon.

Love, Jen

2/20/14

Life is getting away from me!

Wow!  I cannot believe that it has been so long since I have updated the blog.  I guess a big reason for that is just because I don't really have any "news" to report.  In general things here are good. Carla is doing well - she has only missed 1 day of school since January 2nd, and I think that may have had more to do with car sickness rather than actual sickness.  She is reading very well and I like to go to her school on Thursday afternoons to listen to her and her classmates read.  Yesterday she tried out Xcell for the first time.  Xcell is Cascade's after school program.  She wanted to go in the past but then chickened out.  So, I was expecting her to change her mind at the last minute. But, guess what?  She didn't!  When I went to pick her up she asked me to come back later and then when it was time to go she still wasn't ready to leave!  She is just getting to be such a big girl!

We had an appointment scheduled for March 5th at Children's in Seattle, but they pushed it back to the 17th.  So, we are going to go up on the 15th and will come home on the 18th.  I am looking forward to a short visit in Seattle.  I wish Bobby could come, but he has a gig, so we are flying solo!  I got a little bit of anxiety when the scheduler called and said that they aren't having clinic on the 5th and that her appointment would have to be moved to the 17th.  I think I started wigging out because this is the longest we have gone without a doctor visit since I think ever.  We haven't been to the cardiologist since December 2nd!  Yes, I am looking forward to getting a good report from the doctors.  It's nice to have a little freedom from them, but it's also nice to know that everything is alright.

The wind has been blowing like crazy around here and sometimes I think we are going to end up in Oz.  Seriously, it's ridiculous.  I am looking forward to Spring.

Love, Jen