Weary

This post is #170 in a year-long series ... Through this series of posts I plan to share our family's experiences during our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that year from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

February 4, 2009

After a long night, we were released from the hospital, came home, and went straight to bed.  I'm not sure why they decided to try the lung therapies with Hannah during the overnight hours, but they did.  Just as we were getting ready to go to sleep for the night, the respiratory folks came in with a high frequency chest wall oscillation vest for us to try.  This is a device used by children and adults who have cystic fibrosis and it works by vibrating the chest at a high frequency in an effort to loosen and thin mucus.

Hannah was so weak that just sitting up required great effort.  We got her seated upright on the bed, the vest was strapped on, and the vibrations began.  The therapist made sure everything was working okay and stepped out of the room, explaining that she would be back in five minutes to allow Hannah to cough.  She did okay with that first round, although it did not result in a productive cough.  The second round would be longer in hopes of producing a better cough, and once again the therapist left the room.

Within just a couple of minutes, Hannah really began to struggle.  The pounding on her chest was more than her weakened body could bear.  I positioned myself behind her and wrapped my arms around her to help her stay upright and to try to absorb some of the blows with my own body.  We made it for several more minutes like that, but she just couldn't do it.  She became very nauseous and began pleading to stop.  I punched the call button and that was the end of the cystic fibrosis vest.  We were both incredibly relieved when it was removed.

Since the vest was a fail, the next step was a CPAP machine.  They were concerned about keeping her oxygen levels up while she was sleeping, so I suppose the CPAP was a logical choice, but she really struggled with that, too.  She was very uncomfortable wearing it, and it actually seemed to frighten her a bit.  She tried ... she really tried ... to wear it, wrestling with it throughout the night.  She was so miserable, I finally just took it off of her.  I had been watching her oxygen sats with it on, and I watched them with it off, and there was no difference ... well within the normal range either way.  This is a girl who had never complained in spite of everything that had been thrown at her over the past year.  If she didn't want to wear a vest or a mask ... I wasn't going to make her.

After that sleepless night, we spent the morning in the Pulmonary Lab having multiple tests done.  Oh, it was hard to watch as she dutifully attempted everything they asked her to do.  She was so weak and fatigued, yet she was polite and cooperative with the nurses and therapists.  She tried to answer their questions the best she could, but words were failing her.  They finally let us go, sending us home with an incentive spirometer to exercise her lungs. 

During this hospital experience, it hit me full force how weary Hannah was becoming.  She had been so strong for so long, and her body (and mind) were finally wearing down.  It was clear that she was in the process of dying, and as much as I didn't want her to go, I also didn't want to push her beyond her limits. 

I really just wanted to take her home and let her live the time she had left without chemotherapy treatments, platelet infusions, spirometers, and isolation masks.  It was time for her to rest.

My email from a decade ago ...

There's no place like home, there's no place like home....At least that's how Hannah and I are feeling this afternoon! We were home by 12:45, and we both headed to bed. She is still snoozing, but I'm up and feeling a little more like myself after a two hour nap. The lung therapies they tried on Hannah kept us awake most of the night, and neither one was particularly helpful. She really could not tolerate the vest which squeezed (actually shook) her lungs (this is the type of vest used for kids with cystic fibrosis) and she did not like the CPAP machine at all. The vest was supposed to help her produce some productive coughing, and it really didn't...but her congestion does seem to have gotten much better on its own. The CPAP machine was supposed to keep her oxygen levels up overnight, but really wasn't necessary, because the monitor they put on her indicated that her oxygen levels were consistently strong all night, whether she was wearing the mask or not. So, all in all, good news, I guess, just made for a long night!

At 9:00 this morning, they came in and told us that we were heading down to the Pulmonary Lab for some more tests. So, we headed down there, and they did some breathing tests to determine Hannah's lung capacity, etc. It really wore her out, but she was a good sport, and tried to do everything asked of her. We did not get any results before we left, but I suppose we will hear more when we return to the clinic. Her bloodwork was much better today...good red counts and platelets at 66,000, so there was no need to wait for any blood products, and we got to go home pretty early. We'll return to the clinic on Friday for our next bloodwork, and platelets if needed.

Bethany seems to be feeling better, so that's good....thank you so much for your prayers for her, as well as the rest of us. God continues to remain faithful, walking with us every step of this journey, just as you are. We are eternally grateful. He is good, all the time!

Jill and Brad