So, since we were discharged from the hospital, Clara has become a "Day Hospital" patient. The Day Hospital is where Oncology patients go for outpatient treatment. Since they aren't open on the weekend, we go to "Short Stay" on Saturday, which is where all outpatients go for the rest of the hospital. On Sunday, everything is closed and we have been approved to go without any IV therapy for her fungus and we get the day off!
Being outpatient has been incredible and incredibly depressing. It has been incredible to have Clara at home, yet at the same time, it is like a giant tease because she still isn't well. She needs IV antifungals once a day (which have been around the time she goes to bed and can make bedtime hairy) and she needs oral medicines 3 times a day. Plus, we are now back to feeding her through an NG because she has lost .1kg of weight each day over the past 5 days. That is a LOT to manage.
The first couple of days weren't bad. We went to short stay on Saturday which was actually fairly short! (4 hours) And Sunday we had off. I was really loving having her at home but there were some very difficult times as we learned where we keep all these medical supplies and our concerns about her NOT eating became a greater and greater stressor.
But the last two days have been really hard. Clara's potassium levels have been so low that they haven't been able to give her her antifungal that requires it be given at the hospital because it is so dangerous. So they have to draw her blood, wait for her labs to come back, give her an IV bolus of potassium which takes an hour (so far this has taken about 3 hours), THEN we give her the antifungal which takes 2 hours. Somehow the first day that actually took 7 hours. Today, we added IV chemo that we thought was going to just be pushed by hand into her Central line but then we found out (after Alan had already shown up to pick us up) that it needed to be redosed to be given over 30 minutes so we had to wait over an hour for the pharmacy to refill the order plus wait for it to be given.
An additional issue was her NG. I have already mentioned our concerns about her weight lately. We pulled her NG out on Thursday so I wouldn't be tempted to bolus feed her through it over the weekend. I kinda just wanted to see her pretty face without tape all over it; plus, it seemed she was ready to eat on her own as she had been nursing on top of all the feeds I was giving her through her NG. After the clear weight loss (which we saw when she was weighed on Monday), I asked if we should put back in an NG. The doctors said we could weight until Wednesday. I voiced that two days wasn't going to be enough time to see an improvement that would make a difference in her weight. She was just eating so very little (maybe an ounce at each feeding and there were only about 8 feedings a day). After seeing a significant decrease in the number of diapers yesterday day and night and after seeing she lost another .1kg yesterday, I asked for an NG and formula as soon as we were put in our room for the day. It practically took demanding an NG for them to understand that I knew what an NG was, yes she had had one before, no I didn't want to wait for the doctors to see her. She was getting to the point that I was concerned we would be looking at dehydration.
The nurse finally came to put it down and I told her I was concerned that she had measured incorrectly because the length seemed really long and we've had her NG be too long before and become an NJ (the tube ends up in the intestines instead of the stomach). An already long story slightly shorter, she put it down and it WAS too long. The food took all day to get to us and when it did (just as we were about to leave) Clara threw up a bunch of bile - that looked like intestinal bile. She looked very clinically lethargic, she had diarrhea and her heart was racing. All the sudden, they were talking about admitting her overnight to give her IV fluids. I was so pissed. I had been telling them she needed food, I had to force them to give her an NG, which they put in wrong, and then now they want to keep us overnight which was actually just a really big jump too far in my opinion.
It was a really hard day. I know it will get better, and I will learn how to be better prepared in case the day that is supposed to be 3-4 hours becomes twice that. I'm just having a really hard time keeping a happy face, being polite and respectful but still an advocate for my daughter. All the nurses are new to me and me to them, so I am having to build new relationship with them as a Mom that knows what's up and is involved without being overbearing. Until that happens, I just feel like I am a bother and overbearing and have to put on a happy face when I really don't feel that way. I feel depressed but don't have time to be. Her IV meds are due and I have to give her her oral chemo and nightly oral meds. Plus, eat? Oh yea. There is still no food in the house and all I had today was a cream cheese danish, coffee, and then a really healthy (*read sarcasm*) burger and fries late this afternoon once I was at a breaking point from stress and lack of food.
I know this was a long post, and I hope it made some sense to you without raising too much concern. It is just really hard some days. So many of you have begun sending messages of "Thinking of you...Hang in there." We are at this new chapter and I'm just not sure how "hanging in there" can be sufficient or sustained. I look at my daughter and I love her so much. And all this crap completely muddys the waters. I WILL do ANYTHING FOR HER. I would do this for 20, 50 years if I had to. I just don't know how I will.
Here's to tomorrow. I am sure it will get easier as we learn the new routines.