Sunday, March 23, 2014

Still Hanging at The Clinic

I wish this post would be a turn around post to let everyone know that Hope is home and no longer in heart failure.  I have been keeping up with Facebook, but I have been slacking on keeping the blog updated.  It is hard sometimes to think about what to write and to keep things in good spirits.  Hope has a bunch of accessories now and the plan is to evaluate her to see if she is a candidate for a new heart.  Let's start with accessories:

She has her PICC line...which is good and bad.  She gets her Milrinone and Heparin through it and they can sometimes draw labs.  It is mid line because there is a chance of clotting and they don't want a clot in her heart, so they didn't run it all the way.  This makes it harder to draw labs, so she is usually 'stuck' every day.  She is taking that pretty well...for which I am thankful.

She is on oxygen...usually 100% at 2-5 liters depending on her oxygen saturation level.  The lower it goes the higher the liters.

She now has a feeding tube.  This happened yesterday because she is not eating enough to sustain her and they want her as strong as possible if she is a candidate for a transplant.  This is something I have fought for over 4 years, but I finally conceded and let them put one in.  She seems OK with it and hasn't figured out how to pull it out (thank God).

She also has the normal stuff...pulse ox monitor and EKG leads.

Now...onto the transplant information.  This is a lot harder for me to write about and it scares the HELL out of me.  Hearts are a very precious gift from a family that is going through a parents worse nightmare.  Not many are available because not too many children die and have parents that are willing to donate something so precious.  Hospitals have to make sure anyone on the list is a good candidate...meaning if they put in a new heart it will improve the child's life and keep them alive for as long as possible (10-20 years is typical).  With that said, there are anatomical issues that Hope was born with that may not make her a very good candidate.  She has very small pulmonary arteries (about 2mm and normal for her age is about 8mm).  The pulmonary artery carries deoxygenated blood from the right ventricle (the only one Hope has) to the lungs.  Because Hope's are smaller, the wedge pressure is high (14mmHg) and there is fear that a new heart would increase the load too much and create pulmonary hypertension (which is bad).  The other issue we have faced since Hope was born is her kidney function.  While it has remained stable for years, we do know that her kidneys are not the greatest.  She has multicystic (which means her good kidney has cysts) kidney disease.  She has also renal agenesis (meaning her other kidney is very small).

Hope has also received blood products during her open heart surgeries, which means her antigens (any substance - usually a foreign substance...blood from someone else which provoke an adaptive immune response) may be high.  If that is the case, it would also be harder to get her listed and much harder to get a heart.  She will have her blood drawn in the morning to get the number (between 1 and 100) to see her potential rejection factor.

We have started the process, but everyone is very up-front and honest about the issues and the likelihood that she will be listed at the Cleveland Clinic Children's Hospital.  We should find out more tomorrow and I would appreciate everyone to pray between 3-4 tomorrow afternoon for approval to be on the transplant list.  There is a meeting from 3-4 tomorrow where the cardiac and transplant team gets together.  Hope is on the schedule and I am guessing she will be talked about a lot.  She can be approved or denied at this point.

At any point in the approval process they can deny her to be listed.  If that were to happen we would seek opinions until we find a transplant facility that will list her for a new heart.  We will NOT give up on Hope.  We would prefer to stay in Cleveland, but if they do not believe in Hope...we will find somewhere that will.

If she is approved by that group, she will be presented on Tuesday to the adult Cleveland Clinic transplant team.  She can be approved or denied at this point.

The third round of approvals goes to LifeBanc (a consortium of Ohio hospitals) to determine if she is a good candidate.  They will not know her...only her medical information.  It is based solely on scientific information based on her medical records...which sucks because it doesn't give them an accurate picture of what a fighter she is.  I think they have 48 hours to make a determination (which would be Friday).  She can be approved or denied at this point.

The 4th and final round of approvals is at the national level (UNOS).  They will also only base their decision on her medical records.  This is the final level where she is either listed or denied.

Please, please, please keep Hope in your prayers on Monday that they will approve her for a new heart.  This is one of the biggest and toughest decisions that a hospital can make and we will be praying that they accept her.


  1. Paula, when Olivia received her new heart it just so happened that they were not going to use the donor's lungs so they also transplanted the pulmonary arteries with the new heart. Liv's weren't as small as Hope's but maybe throw it out there to see if the staff would be willing to consider that as well for Hope?

  2. Praying for her and your family. What is her facebook name I would like to continue to follow her.

  3. Thinking of you all and hoping for the best.

  4. Praying for the best outcome.

  5. We are praying for your amazing daughter and for your entire family. I wish I could give you a big "heart mom hug."

  6. Thinking about you guys and praying for approval for Hope!!!