Month: April 2016

Today we recover from failure, the failure to stay positive. I realize that “failure” is a bit extreme, but as Paul and I discussed it important to try to teach your child not just to succeed but to be able to recover from failure. Certainly life is going to have its ups and downs but adding to the negativity not only can hurt others but it hurts ourselves as well. I don’t know the internal workings of why some nurses don’t feel they can handle an emergency 50 feet further from the front door. I’m guessing it is not at all a matter of skill or competency, they certainly seem to have that, but it is a matter of personality and one thing I’ve been surprised to learn is how much personality plays a part in medicine. One thing I do know is I can stop complaining and try to be part of a solution or at least change my attitude.

Today I tried a couple different apps on my iPhone that tracks your whereabouts and gives you an emergency call option. So far, I haven’t found something that I feel works in our situation but I’ll keep looking. Unfortunately, I don’t really believe that offering a solution of a sure fire emergency response is going to make a difference, but I’ll try anyway. 

Today we got some good news! Hana is allowed to go to the adult side of the Stanford hospital to see the live music performances they have on Wednesdays and Fridays! We have been waiting for respiratory season to be over. For the first one she will be accompanied by the nurse practitioner but she should be allowed to go with her nurse as well. I’m sure the same nurses who are not comfortable taking Hana outside will not be comfortable taking her to the music performances either. So, we’ll see how it goes. The first performance is music of Italy. I’m not sure if this style would be Hana’s first choice, but we will see how it goes! We are very excited.

Where do I start? Hana’s had a GREAT week. Eight kids came to visit her on six different occasions, so it may be her best week yet! There is nothing like having kids visit. She is elated by the outside company! My mom got here on Monday night so that has made things easier and we are able to do more fun things. Hana only had one blood draw and her usual dressing change and that was it for unpleasant procedures! 

On the other hand, a storm is brewing that is unraveling me. There has been talk about decreasing the distance Hana is allowed to go outside. As it is now, she goes about 100 feet from the front door. Unfortunately, the nurse’s phones have spotty reception, so they won’t allow her to go that far. This also means that she would not be allowed to go to the water fountain in the atrium because the reception there is also spotty.

Hana only gets to be outside 20-30 minutes a day and sometimes she doesn’t get to go at all. That’s not much, if you ask me (and that’s all with a mask on so forget about breathing in fresh air). Now, depending on the nurse she has, she may not get to go see squirrels, insects, plants, rocks, grass and the world that exists in front of the hospital. She may not get to play in the water fountain. Just writing this makes me so angry I want to scream. I guess the modern technology of a cell phone is not sufficient to make a phone call in the event of an emergency. I have all the emergency numbers programmed and on speed dial on my phone, but, alas, that is simply not a reliable enough way to do things according to some nurses. Instead we must depend on phones from the last century that have spotty all over the hospital. That sounds much safer, don’t you think? You must sense my bitterness by now.

Before I go any further I must stop to say that the nurses have good hearts. They really do. But I am at the mercy of their short sightedness, even with loving and generous hearts, and it infuriates me. I want Hana to be safe and if being safe means being able to make a reliable phone call than let’s figure out how to do it rather than stifle a young life who already has to live under incredibly strict confines and limitations. It’s ridiculous. 50 feet makes a BIG difference.

Yesterday I finally got out for a jog before I started screaming and afterwards I sat out on a bench in front of the hospital and cried. We are getting weary. There is no privacy, no control, very little freedom. Hana is VERY stable. I don’t get to feed her when I want. I’m not allowed to get my own breast milk from the refrigerator to give to her when I want. I have to wait on someone else to bring her meds. I have to ask if someone can take us outside. All of these things I controlled at home. Now, it’s maddening. It makes me wonder if this is how older people feel as they have their independence taken from them. Yes, it’s for a good reason, I suppose, but it’s a pretty terrible feeling, like life is slowly being squeezed out of you.

For all my complaining, we are still grateful. In many countries they would never put someone on a Berlin Heart maybe because it simply costs too much money just to save one life. But here we are, trying to do our best and not lose our minds. Monday will mark five months since we took Hana to the ER with a collapsed lung that started this hospital adventure. It could very likely be five MORE months before we are released into the wild (the Ronald McDonald House here in Palo Alto). Thinking like that depresses me, so I try not to let my mind go there!

   
    
    
   
150 days in the hospital, 132 days post-Berlin Heart, 124 days on the transplant list.

Tonight, Paul and I were getting ready to leave the hospital to spend an evening at home. The nurse and the cardiology fellow came in the room to check if Hana’s feed had started (I set it up but forgot to start it!). I started shaking because I suspected what might be coming. They had a potential donor heart for Hana but were still evaluating the donor’s antibodies and Hana’s to see if it was a match.

In these situations they likely would not tell us, they don’t want to get our hopes up until they know for sure, but in this case they wanted us to stay and not head home. It was a long 45 minutes. Judy, who was staying with Hana for the night, was there too. Hana kept signing for milk, which she couldn’t have. I kept thinking and wondering and planning and keeping my emotions in check. There was a lot of emotions but we didn’t want to get too excited. One cardiologist told me that there is typically a few “warm up”calls before the one comes in that is a match for the patient.

After 45 minutes or so we talked to the heart transplant fellow and he told us that the donor was not a match for Hana, they declined the offer. Of course, we were a little disappointed but we also know that the right heart will come some days.

Either way, some family facing immense grief has decided to give the gift of life. Some child will get that heart and for all of this I am very grateful. It makes waiting easier, when you have hope!

   
    
  
143 days in the hospital, 124 days post-Berlin Heart, 116 days on the transplant list. To