Alright so we continue. So we make the choice to NOT do the biopsy at that time. While getting a diagnosis is something that we need, we don’t need it bad enough to put her in anymore danger than she is already in. We do decide though that she will need it soon. On that note it is scheduled for the second week of January. We leave the hospital with the weight that we will be returning in 2 weeks to have the procedure done.
It’s amazing how fast some days can go while others drag on like the sun forgot to set. She started to finally show signs of getting better and we started to prepare for the surgery. Dr. J oozed confidence in her preop appointments and honestly that really helped calm our nerves.
The day of surgery finally arrives and we head of to Providence knowing that this is going to be a bit of a trip. After all the usual pomp and circumstance we are alone with her in the preop area. I don’t know how I managed to keep it together while they started the sedation on her because inside I was screaming and crying and angry and sad and everything else you can think of. There were no words that can fully describe how useless I felt that day. No matter how this turned out it was going to be hard on her. Mom & dad came as did Janine and we waited the long 3 hours for Dr. J to let us know that she was okay.
Dr. J came out and told us that she did fine. Everything went as he had expected and he removed a 2 x 3 inch section of her right lower lobe. She was asleep and hooked up to all sorts of monitors but he’d take me to see her. Now I had looked at everything I could get my hands on regarding lung biopsy’s but nothing could have prepared me for what I saw when I saw her. If they didn’t have a chair for me there I would have fainted. She had on “No-No’s” which are restraints for childrens arms so they don’t hurt themselves by pulling out lines or tubes, she was moaning but not awake but then so quite that it was scary. She had a tube in her nose (NG), a bloody tube in her chest, a catheter, an IV, and her oxygen on. The amount of disorientation that she was going through was heart breaking in a way that I will never be able to explain.
After the surgery she was moved to the PICU to spend a day, 2 days, 3 days; however long it would take for her chest tube to stop draining. She didn’t wake up for a few hours and when she did it was clear she was in pain. They had a morphine drip going to help and it didn’t take but a day to realize that she was allergic to it. That and the silk tape that made her face swell up like a balloon. That was no fun either! She had to stay in the PICU for 3 days until her chest tube was able to be removed. She also the NG tube in (which goes in through the nose and into the stomach to help suction out blood that may have drained in there). Luckily that only had to stay in for a day and a half and she actually pulled it out herself before the nurse was ready too. Fun times, fun times.
Once the chest tube was removed she was able to be moved to the regular floor. From there it became what is typical of Alana and a battle to drink and eat. She ended up needing to stay another 3 days to heal and get to the point that she was eating and drinking. She was still sore but she was up and moving and started to get better. We were told that they wait for the biopsy results may be up to 6 weeks. Wait, wait, and some more waiting, isn’t that the name of the game with Alana.
We ended up not having to wait that long. The results were sent to a special pathologist in Texas who specialized in certain types of lung disease and she was waiting for Alana’s lung to get to her. It came back and now it seemed as though we’d have a diagnosis after all this time.
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