Three Years Ago...

Three years ago today, we tucked our little nukum in bed, said our prayers and then the phone rang... It was the hospital, "I think you know why we are calling at this hour," is what Pam, one of the heart transplant coordinators, said to me. I was in a state of shock... I was expecting a beeper to go off... not just a phone call a little after bedtime. Plus, we had been waiting so long for Carla's perfect heart that we quit thinking about it and started just trying to live as normal of a life as possible. I hung up the phone and told Carla, she cried because they were having a play at the school tomorrow and she wanted to go. I told Bobby, called family, calmed Carla down, packed a bag, cleaned up the house... let Carla play some video games (to calm her nerves) and FINALLY headed over to the hospital. We were minutes from the hospital but it took us a little more than an hour to get there. The thing is, we knew that 1) they were going to do the surgery in the morning so there was no need to rush over to the hospital just to hurry up and wait; and 2) these were the last normal moments were were going to have for a while. 

Carla, before school that day...
Carla, before we left for the hospital...

Another family was having a total different experience that night, they were saying goodbye to a beautiful little boy, taken too early. We feel so blessed that during their grief, they chose to let Justin live on through organ donation. Justin's perfect heart was a perfect fit in Carla's chest cavity, and even though she was highly sensitized, Justin's heart was also a perfect match for Carla.


Tomorrow we will celebrate Carla's Third Heartiversary, it is the day she was re-born, so we treat it as a birthday. We will also celebrate Justin, think of him and send balloons to heaven for him. We will be forever grateful for the wonderful gift of life his family gave Carla. 

Love, Jen


Happy Halloween!!!

Carla went as a witch this year!  Green skin and pink hair! She was thrilled, did a bunch of trick or treating and then went to over to the church where they were having a party and a hay ride!  She had a very good time!  We are blessed...



Well, we've been home for a week and Carla is doing well.  She is super excited about today, as she has a play-date with one of her classmates and then we will be doing some trick or treating. Carla says it will be "The Best Day Ever!" One of the pleasures about living in a small town is that the kids still get to trick or treat. I will take pictures later and post.

Last Friday, the day after getting home, I caught that super horrid illness that Carla had.  It had me on my back for three days, followed by another couple of days of fatigue.  It was probably the most sick I have been, like ever.  This morning Bobby woke up feeling sick!  I feel so bad and hope that he doesn't get it as bad as I had it! :( I was really hoping we could all just be healthy for a while! He's going to stay in bed today and hopefully get better.

On Tuesday we finally got the carpet in our new apartment and have been busy this week getting stuff moved in. I have a feeling the house will be messy for a while, but it's fun to have access to our stuff again!  It will be especially nice for Roger and Tammy when we finally have our stuff out of their house and they can use the whole upstairs again.


Being released!

We are currently in the discharge process!! Carla will receive her flu shot and then we will be on our merry way! She still needs nighttime oxygen to keep her oxygen level above 90, but that's no big deal! We are super happy!


Wednesday night update

We are still hanging out at Benefis but Carla is slowly but surely getting better.  This morning I had a hair appointment that I had previously rescheduled when we were in the hospital last month. I really didn't want to reschedule again because my stylist takes quite a while to get into, so Tammy came to the hospital and hung out with Carla while I got my hair cut and colored. Yay! Carla was doing very well, went for a walk and was in really good spirits. When I got back the doctor told me that she had spoken to Seattle Children's and they were all in agreement to discontinue the IV antibiotic, because it is really hard on the tummy and none of her lab work has shown infection. And that Carla's magnesium level was 1.1 and they wanted it up to 1.5.  So, she has to take ALL of her pills today and MAY be discharged either tomorrow or the next day. When Carla was so sick we didn't force her to take all of her magnesium pills (because she takes 12 a day!). Now, I  just need to find a way to get her to take them all again.  It's really hard because her throat is still sore. Around 4:30 today, right at med time, Carla started developing a fever again and had the poos.  It was a bummer because she was feeling so well most of the day. We had been snuggling on her bed and being silly. Carla laid down and fell fast asleep around 5:15.  It is now almost 9:00 and she really needs to wake up so that she's not up all night, but I don't dare poke the sleeping tiger.  That little tiger can be fierce when she is sick and you wake her.


Well, Poo...

Carla has tested positive for the sapovirus, which is in the norovirus family.We think this is separate from whatever is causing the coughing. (And probably what her classmates at school have suffered from as well). The sapovirus causes diarrhea, vomiting, fever and the median time period is 48 hours. I think this virus came on yesterday as she seemed to take a turn for the worse yesterday and wouldn't eat anything but had diarrhea all day and night. This virus is contagious for up to 2 days after symptoms subside. This is ridiculously bad timing, but it is what it is. hoping that she's seen the worst of it so far and that she gets all better soon.  This hospital stay is getting long in the tooth and she is over it! 

Right now she is napping... sweet dreams sweet girl.


Monday morning update

Yesterday afternoon Carla spiked a fever of 103.8, but since then has only had a low grade fever, and we haven't had to give Motrin, which is a huge improvement. Through the night Carla's O2s were dipping into to high 80s, so we put a whiff of oxygen on her. When she woke up this morning I removed the oxygen and she is still saturating in the 90's, so she doesn't need it. She has been coughing up tons and tons of phlegm from her lungs, which is good. But it is very hard on her and she is in a very tired mood. Carla is in no mood to talk, eat or be bothered. She wants to watch Looney Toons and be left alone. Which I am fine with. Poor baby. 

I spoke with the school again and we are on track to get her listed as a "home bound" student. They will figure out who will be her home bound teacher and we will have a meeting to update her 504 and get the ball rolling when she is better. 

Just to clarify, being a home bound student is different than homeschool. An actual teacher from the school will come to our house and teach her what the kids in her class are learning. It will be good. 

Please pray for healing. 

Love, Jen


Sunday Morning update

Carla had an ok night but started spiking a fever again this morning. They gave her Tylenol at 6:00 and her fever actually went up. They gave her Motrin at 7:30 and so now we are waiting for that to work. It's usually the only med that can break her fever (but Seattle Children's  frowns on giving it to her because it goes through the kidneys, and her transplant meds also go through the kidneys). Carla is coughing up a lot of phlegm and is having a hard time keeping her oxygen levels above 90, so I foresee oxygen in her future. I'm hoping when the fever comes down her O2s will come up, but I'm not sure the hospital will be so patient about it. Carla says: "That machine lies, I feel great!" While she's not shivering and miserable, I'm pretty sure she doesn't feel great. 

Please pray Catla feels better. I'm worried that I might be catching the cold now too :( so prayers for me would be appreciated as well. I really don't have time to get sick. 

Love, Jen


Back in the Hospital!

It has come to my attention that I am a bad little blogger!  I blame facebook.  Just kidding, actually we have just been so busy that I haven't had a chance to get on the computer and blog. Carla was released from Children's, Friday the 25th of September.  We made it home on the Tuesday after and she was able to attend a couple of days of school... just enough to catch another illness.  After she got better from that she was able to attend another couple of days and got sick again!  She has been sick all week and we started antibiotics on Wednesday. She has been spiking fevers on and off since Wednesday and even though we started the antibiotics, she hasn't seemed to get any better.  So, today I texted her pediatrician, she came in to the clinic special to see Carla and after seeing her, getting an x-ray and talking to Children's, we are now admitted to Benefis Hospital. Carla is being a really big trooper and I just can't believe how big and brave she is.  I tried really hard to keep her home and told her (after they'd been digging around in her veins and finally got an IV) that the reason I don't like to take her to the hospital is because of all the poking and prodding that they do to her. She looked at me and said "Mom, it's for the best."  Now we are waiting for more lab work, so let's hope that turns out well and that they can get some blood from her. She's had one poke in the arm with no luck, it took two pokes in the hand to get an IV and now they will try with all of their might to get a bunch of blood from her. She also had her regular labs on Monday, and nose swab and more labs on Wednesday, when I took her to the pediatrician. Needless to say, we are over it.

On Friday, I talked to the principal of Carla's school and we have decided that we will be doing home bound schooling from now on.  The benefits of being social just don't outweigh the consequences of being around so many other children. It will definitely be an adjustment for our family to not have her attending school anymore, but I am looking forward to her getting well and staying well for more than a day or two.

As far as other news goes, we should HOPEFULLY be done building our new apartment in 10 days! That's when the carpet guy comes to finish up his work. We are so incredibly tired of living with most of our stuff in boxes, and cannot wait for some normalcy again!

Please pray that Carla gets well soon.

Love, Jen


Yesterday was a pretty good day. I asked the nurse to send Child Life in here and they gave Carla a little Lego Friends set to play with.  It was so nice for her to have a distraction.  I also went to the gift shop and bought her two little stuffed toys and a little pencil sharpener and a chocolate bar. So, she played with her toys and that was good. It's so hard to be cooped up this way. And, because she has a cough, they wont let her go for a walk or leave the room.  I can't even use the refrigerator on the floor. I asked them if they could lift the restriction, because she has had two viral panels that came back negative, but they wont. It's super annoying and I have moments that I just really hate this hospital. I guess I was spoiled at Primary Children's Hospital because they are SO GOOD to their parents. Seattle Children's really could learn a thing or two. Maybe it's not fair to compare, but I can't help it.

Monday night Carla had a scary little incident that looked similar to when she got the PRES syndrome after she had her transplant. She was seeing things that weren't there and in a dream like state for about an hour and a half. I was so scared. I told the nurse that I was worried about PRES, that I wasn't interested in giving her any immunosuppressants until we knew her levels and that I wanted the doctors. Turns out she is fine now (thank you Jesus) but one of her med levels had jumped from 5 last Monday, to 10 this Monday, to 14 yesterday... and that's without giving her her Monday night dose. I can't even imagine what damage could have been done had they given her the Monday night and Tuesday morning meds. The antibiotics have changed the way her body has been able to metabolize the medicine, so the level jumped really high. We will be holding that med for a while and only giving her half a dose of the tacro (which actually is metabolizing fine, but was the one that caused the PRES back in 2012). 

Overall , Carla is improving, we have been able to turn her oxygen down over the last two days, from three liters, to two, and last night down to one liter! Her oxygen saturations are still in the 98-99 range, which is fabulous. She is still having at least one fever a day. They don't come on quite as fast but they are still rearing their ugly heads. Let's see if I can upload a couple of pictures...

Taken Saturday, at Benefis in Great Falls. 

Getting ready for the Mercy Flight.

Monday, after I gave her a shower and braided her hair.

Yesterday, Carla was so sick of being in her bed, but couldn't go anywhere.  I took her out of bed, put some music on, held her and danced... then I sat on my little bed area holding her and dancing (she's not as small as she used to be). We took this selfie and then she fell asleep on my shoulder shortly after. I let her sleep on my bed (without monitors) until the nurse came and made her move. She just needed to feel a tiny bit of normal... 
Here's to another day of healing and prayers for healthy lungs. 

Love, Jen