Day Three: Slowly But Surely

Today was H's first full day in the step down unit. She was in a lot of pain, which is being managed, but despite that she was able to walk even longer today.

Being the sociable girl she is, H is starting to get a little frustrated about being so stoned/drugged up from all the painkillers, since it knocks her out in waves. Her parents said she is awake for 15-minute intervals, before dozing off again, sometimes in mid-sentence or after rolling her eyes at her mom.

Thankfully, she was awake when her transplant surgeon came in today to answer any questions she had--her parents were very interested in what their drugged up daughter would come up with--and she did have one: "What did my old lungs look like?" It might sound like a morbid question to some, but she was genuinely curious. The surgeon confirmed they were diseased and full of infection.

No tubes were removed today, although they were considering removing the catheter, H elected to leave it in for one more day so she didn't have to worry about the risks. Maybe tomorrow.

They also increased her rejection drugs today, which meant she was very nauseous. To give you an idea of how strong these pills are, when she was given one of the medications she was instructed not to touch them with her hands because the acid would burn her fingers--and to swallow it really quickly. Not exactly the type of thing you want to hear, but she took them anyway.

H's mom was also pleased to have a little reunion with the St. Mikes team today; they had just finished up a meeting about other pre-tx patients and stopped by for a little chat. I'm sure it was nice to see familiar faces in a world of everything new.

Reunions continued into this evening as H's dear friend and I went to the TGH lounge (with a Starbucks) to meet up with her parents. I am happy to report they look well--relieved almost--even though they know there is a long way to go. The difference is everything is going in the right direction instead of going in the wrong direction for so long. H's mom was looking stylish and sporting her Hattitude. I gave them "air hugs" as I left, since we always maintain a distance to avoid any cross-contamination* see below for explanation.

Today was tougher, but it was still another baby step forward!

- Lindsay

P.S. Apparently there have been a lot of people asking who I am in relation to Hattie and how I know the medical terminology. I also have Cystic Fibrosis and was assessed for a tx last year (but I'm currently too healthy to be listed). H and I have been close friends for a while now and refer to each other as "Cystic Cysters". Although we cannot ever hang out in close contact due to infection control issues (we can pass bad "bugs" to each other) we are always chatting throughout the day via e-mail, skype, phone or text! So we are very close, despite the barriers!