Finding the Magic Number

At this point with Dru's disease, it's all about the numbers. 

The higher her score the more offers she can potentially get. And as Dr. Jensen has said, it only takes one good offer. We only need one

So far we are not getting any. 

Dru is stable but very sick. The only thing that can make her better is a new liver. 

We have officially been here for three weeks waiting for her liver to come. She's too sick to go home and needs more professional care than I can give her. 

If I had any doubt of that before, I was effectively reminded on Sunday night. 

At about 6 pm the nurses came in to do our nightly routine of starting her IV nutrition through her picc line. 

After everything was started I saw that her picc was leaking blood. Turns out there was a crack in the cap at the end of the IV line. 

So the nurses clamped it off and called the IV team to come place an IV for her nutrition until a new picc line could be placed the next morning. 

While we were waiting, Dru fell asleep. And she was sleeping good. 

Too good. Within an hour of her TPN being stopped, her glucose level dove to 24. 

She was not responsive. 

About 6 nurses were around her bed trying to rouse her. They were calling her name, flicking her feet, clapping their hands. She wouldn't open her eyes. 

An IV line was quickly placed and she was given a concentrated dose of dextrose. 

Finally she started stirring. They tested her blood sugar every hour through the night just to be sure. 

I was scared when she was so still, BUT I knew she'd be ok. I am so grateful for the nurses here who trust me when I say she's not herself or something's wrong. And then they do something about it. I feel safe here. 

Right now, Dru's labs seem to be changing everyday. And her points change almost everyday too. 

Right now she has a PELD score of 42. 

If she needs a transfusion in the next 12 or so hours she will be given a 1B for a week. 

That means she's critical, but fixable and a 1B will essentially put her on top of the waiting list. 

So for now we are just trying to find that "magic number" that will be the key to that one perfect offer. 

Our home away from home

I can't believe it's been a week already from my last post. 

So much happens from day to day. 

It's hard to keep up. 

Earlier this week we had very high hopes that Dru would be able to come home for a few days. Her labs were looking more stable and our doctor was on board to send us home on Monday. 

Monday morning our liver team decided to have an echocardiogram and MRI done while we were still in-patient. This was totally fine with me if it got us home. 

But it didn't. The results of the MRI pretty much sealed the deal that we are official residents of Primary Children's Medical Center until Dru receives her transplant. 

Her MRI showed that she has pockets of fluid in her liver that are possibly causing the blood flow to her kidneys to be restricted and that is causing her kidneys to fail. Our team has to decide if it's worth it to drain some of the fluid from her liver. The procedure is considered invasive and ups her risk of infection. 

Tuesday, Bill came up to visit and was here when Dr. Jensen came in to talk about the possibility of us listing at another transplant center in another region. After a very frank discussion, we ultimately decided that we feel confident staying here, knowing that our surgical team has a very high rate of success and this is where our support system is. If we listed somewhere else, we would have to live there for a minimum of two months. 

The mama bear in me wants to get her anywhere that she can get a liver faster. 

But there are no guarantees. 

And the reality of being away from my boys for 2 months or more on a "maybe" was the deciding factor for me. BUT, I am working on getting our insurance preauthorization done, just in case. 

Yesterday morning, we were sent to imaging for an ultrasound of Dru's kidneys and their blood flow.

So, that was not fun at all. She does not like having to hold still. And she has been stuffy and can't breathe well through her nose so she wasn't loving the binky either. 

Finally, I had to pick her up and sing to her to calm her down. In that moment, even though I was so stressed, I remember feeling so grateful that I could give her comfort. 

It's the only thing I can give her right now. I can no longer feed her, or give her medicine, or even take her for a walk without help. I have felt rather helpless actually.

But I can hold her. I can love her. And boy do I love her. 

After the ultrasound we walked back to her room and some of our liver team was waiting on us in the hallway. They asked how it was going. Because of the feelings I had just had , I just broke down. 

I swear if I had seen them just 5 minutes later, I would have been fine. Anyways, long story short, I cried, I complained, I sucked it up and said we actually feel blessed. We've been lucky that this is our first extended stay. 

Moving on...

Over the last few days, Dru's INR number has been creeping up. Meaning that her ability to clot is not great. So yesterday she received a transfusion to help boost her platelets. She will probably need another one in a few days. 

Also yesterday, our social worker mentioned that most BA babies spend some time in the PICU before transplant so don't be surprised if we end up there soon. 

And then the kidney specialist came in and said they are keeping an eye on Dru's kidneys, and that scary word "dialysis" came up again. 

Man, yesterday was a depressing day. 

Bill stayed the night with Dru last night so I could get some sleep, and I came back to good news. 

1) our surgeons have decided that Dru can accept a larger liver then they had first planned, and

2) one surgeon in particular feels confident about Dru receiving a partial liver. 

And while we are praying that a liver becomes available for our baby, it never leaves our thoughts that our gain comes from someone else's loss. We pray for our donor's family as well. 

Decisions, Decisions

So Dru is still in the hospital. 

Everything is getting back to her "normal" as far as labs go. 

If her labs stay stable for the next 48 hours, she can come home!!!!

It's not really home without her. 

There have been some pros and cons that we have experienced at the hospital in the last 10 days. 

First and foremost I am so grateful for a liver team that wants nothing but the best for my girl. And the fact that they take my concerns seriously earns them some serious respect. 

The fact that they fight for her earns them my love forever. 

The downside of being admitted, is missing the hell out of my boys and our usual routine. We are not used to being apart for too long. Thank goodness for an awesome daddy who does my job better than me. 

I also dislike that Dru's routine is interrupted. Constant meds and tests and blood draws. I know I shouldn't complain because these interruptions are what is keeping her headed in the right direction, so I will go on to say that I absolutely loved all her nurses. They love her and I can tell. And one in particular, Alysha, has become a new friend. 

I was also able to meet a sweet family who were in the room across the hall from us. They just learned that their son has Biliary Atresia. He was scheduled for the kasai procedure in a few days. 

I was taken back to the night we learned that Dru had this disease and all the confusion and heartache that comes at you like a speeding train. I don't know if it helped this family, but it helped me to relate our story to them. I remember scouring the Internet for any blogs or articles about Biliary Atresia. I think it's helpful to have as much information as possible. They are an amazing family and already choosing to be positive. 

That choice makes a big difference. 

Another happy result of Dru being admitted and having kidney issues is that our team was able to appeal for exception points. 

And we were approved 1 day later. Dru now has a PELD score of 40!!

Now I'd really like to celebrate this score and feel hopeful that a liver offer is right around the corner. But...

Our liver team is concerned. 

The average wait time for a liver for a patient with the blood type Dru has is 124 days at our hospital. 

Dru has been waiting 231 days. 

Her size, and the fact that she needs a whole liver, and her portal vein being clotted, combined with our surgeons being on the conservative side are making it difficult for that "perfect" liver to be available. 

The fact that we share a region with California  doesn't help. They take a lot of donor organs because of their population but they don't donate a lot. 

Please, please donate!!!

Because of a lack of donations, there's a chance my baby won't get the liver that saves her life. 

Because of a lack of donations, we have to make the decision to have Dru listed at a transplant center out of our region. Halfway across the nation. 

There is no decision to be made really. I will do whatever it takes to save her life!!!

Breakdown

I need to get caught up on the events of this past week. So I'll take it day by day and hope I don't forget anything. 

Sunday, October 5--

Dru hadn't been acting like herself. She slept in til 11:30 and I was constantly going in to feel if she was breathing. She woke up for about an hour then took another 3 hour nap. She threw up around 3:30 so we turned off her pump to give her a break. 

Monday, October 6--

Dru is still pretty lethargic. Our home health nurse came to draw blood for labs and all her vitals looked fine. Right after the nurse left, Dru threw up so I took her off the pump for about an hour. 

She went down for a nap at noon and I had to wake her up at 3:30 to take her brother to baseball. As soon as I walked in I knew she had thrown up. It scares me that it was so much and it didn't wake her up. I was a bit of a basketcase as she slept that night. I kept running in to make sure she was breathing and not laying in throw up. 

Tuesday, October 7--

Our liver clinic called to discuss her labs which weren't terrible (yet) and I told them my concerns. We made an appt for Wednesday. 

Wednesday, October 8--

We had our appointment at the new outpatient building (which is beautiful by the way). We had labs done first, then went up to talk to Dr. Jensen. He asked us how things were going. Bill said that he can just see that Dru is tired of fighting. 

I sat in my chair looking at her in my lap and just cried. 

I've never done that before at an appointment. Dr. Jensen just handed me a box of tissues and said he thinks we are getting as far as we can with keeping her at home.

 He thought another infusion of albumin would help and we could have it done at the hospital or we could have home health come do it. 

We opted to do it at home and keep her out of the hospital til absolutely necessary. 

And then her lab results came up. 

Her kidney numbers were very high. Her kidneys had shut down and she was extremely dehydrated. 

We were admitted immediately and she was given fluids and medicines to jump start her kidney function. We wouldn't know if it was working til the next day. The word "dialysis"was being thrown around--not cool. 

Thursday,October 9--

Her kidney numbers were about the same. The attending doctor said that they are hoping they would plateau and then start trending down. So Dru was on the same medicine regime all day and night. 

Our schedules have been turned upside down. 

I stay with Dru and sleep at the hospital. Bill spends the night with the boys and gets them off to school. After finding somewhere for B after kindergarten, he spends the afternoon with his girls at the hospital. 

I know it breaks his heart to leave her here. 

Friday, October 10--

This morning her labs look better. Her numbers have been reduced by half!!! 

I'm getting hopeful they'll send us home. 

Dr. Book comes to talk to me about what the team is discussing. 

I ask her if we get to go home. She doesn't answer like I expect. 

She says " you know, it's not unusual for babies that are this high on the waiting list to be here until transplant"

I can't decide if this relieves me or not. I miss being home after only 2 days, but I also feel some peace knowing she's being monitored so well. 

Anyways, her belly is still quite large so our team wants to do another tap to see if the fluid in her belly is infected and could be causing her kidney problem. 

Before we schedule the tap they send us to ultrasound. Turns out there is not a lot of ascites, but her bowels are huge and full of fluid. There is a concern that her digestive system is slowing down and may stop working altogether. 

The first plan of attack is to put her back on NG tube feeds at a low volume (she had been on 24 hour TPN since being admitted). 

Saturday, October 11--

The tube feeds are not working. She just throws them up. So now they are adding miralax to her feeds to see if things will start moving. 

Today is pretty quiet at the hospital. Dru is pretty tired so we spend most of our day just snuggling, waiting for dad to come see us.

 And he is sweet enough to stay the night so I can spend time with the boys and sleep in my bed!!

Sunday, October 12--

Bill says he and Dru slept really well. And she pulled her NG tube out--that's the third time!!! They had also given her Benadryl to help with her itchiness. 

The boys and I are heading up this afternoon for some much needed family time. 

That is the hardest part for me--my heart is in two places. I miss whichever part I'm not with. So much it aches. 

Countdown

Life seems full of countdowns. 

Countdown til Christmas. Countdown til birthdays, vacations, date night, due dates....

I wish there was a definite date I could countdown to for Dru's liver. 

But nobody can tell you a specific day. You just get your hopes up every time the phone rings. 

So instead of a countdown I'm counting up. 

I love to run and workout but I have put it on the back burner here of late and my body and soul have grown heavier because of it. So I have challenged myself (and anyone who wants to join me) to run at least a mile a day til Drus transplant. Or if I don't run, at least make a deliberate effort to move in some way. 

Today is day 7 and I have to say it's been a nice distraction to get that run in everyday. Sometimes Dru has even joined me. 

Another fun side benefit of challenging myself is seeing others that have joined me. 

My family, and friends, and people I have never met on Facebook and instagram. I'm hoping that with every post that is hashtagged with #running4herlife or #movingformissmagic that we are bringing more awareness to biliary atresia and organ donation.