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!