Day 11 - The most depressing place on earth …

We need to get out of this place. It’s nasty. There are germs and microbes that I don’t even want to think about. The kid down the hall with MRSA went home this morning … although I’m assuming she no longer has MRSA.

Then there’s the cancer unit. The world-renowned Seattle Cancer Care Alliance, Mary M. Gates Cancer Unit. Huge signs on the entry doors read, “STOP! Do not enter if you have cold or flu symptoms … etc, etc”. It sits right in front of the Train elevators, which I use multiple times a day. More often than not, a cancer patient wheels or walks out of the unit. Most are bald, which means chemo. Some have hair, which probably means radiation. The ones who are swollen up beyond recognition may have lymphoma. Many have NG tubes up their noses. Some are too frail to walk. Others are in street clothes, excited to leave and perhaps in remission. They range from toddlers to teenagers. It’s heartbreaking. It makes me think of the hell my parents had to go through when my brother had cancer. He was bald, frail, and had an NG tube. He walked in and out of the hospital until one day, we all walked out of the hospital without him because he died. I hate the cancer unit and I wish I didn’t have to walk by and be reminded every day.

There are some really, really sick kids here. Jennah is hardly sick in comparison. Code blues are called on a daily basis. And those don’t include the codes that are called within the ICU or cancer unit. I count our blessings that Jennah is doing as well as she is. We are also thankful that Jennah is not cognitive and totally clueless as to what is going on. Many of the kids here are terrified and confused. When we were in the surgery prep area yesterday for J’s PICC procedure, there was a young man, maybe 11 years old, who looked very brave and very tough, but very sad. I had seen him come out of the cancer unit a couple hours earlier when I was running out to the cafeteria. I heard the nurse tell another to take his parents out to get a pager because the boy needed a moment. Sure enough, as the parents left, the nurse (a manly male nurse, btw) took his hand and said, “you can cry now.” And so he did. I had to pull the curtains before I totally lost it myself. I just felt so sad for that boy.

It’s frustrating that we’re still here. After all, Jennah is far from being as sick as these other children. We’re just taking up a whole private room. But no, they won’t let us leave. And a care coordinator just signed me up for TPN teaching for Tuesday. WTF??? I thought we were going to get out this weekend …

Plan for today:

1. start Pedialyte and try to tolerate 35 ml/hr without retching.

Day 10 - How much longer?

Yesterday’s tests, an endoscopy, sigmoid colonoscopy, and an MRI, return all negative results. This is great! Or is it? So we still did not have a clear answer or diagnosis to her vomiting. Nonetheless, passing these tests allow us to start a medication, cyproheptadine, which essentially puts a hard-stop to the vomiting at a neurological level.

So last night, for the first night in nearly 3 weeks, we were vomit-free, retch-free. While we are all absolutely ecstatic that she has some relief, it’s not completely satisfying since we don’t have a good diagnosis. There is a disorder, cyclic vomiting syndrome, which is a type of migraine that presents with Jennah’s symptoms, but the criteria for diagnosis do not precisely match. The doctors also seem to be stumped, although the GI doctor still has some options he wants to consider. I ran into Jennah’s hospitalist (her primary inpatient dr.) in the elevator as we were on our way to get the PICC. I was very excited to tell her that she didn’t vomit last night and said, “maybe we’ll be out by the weekend!” She gave me the weirdest response, which I’m pretty sure meant, “don’t bet on it.” Boo.

Not sure what the plan is with this medication, but we want to get her to start eating again. That’s our ticket out of here at this point. It’s going to take days to ramp her back up to her 32 oz/day feedings. I imagine they’d let us go if she starts getting comfortable with about half that amount. Maybe. As I type this, Jennah is under general anesthesia getting a Peripherally Inserted Central Catheter (PICC) for her fluids, nutrition, and any meds offered in an IV form. It’s inserted just above the elbow and leads through the subclavian stopping just before the heart. It will be a relief to no longer have IVs. She’s had 4 IVs in the past 10 days (not counting the one at urgent care 2 days before our stay here!) and her veins are bruised and swollen from the large molecules of the parenteral nutrition solution.

Plans for today:

1. get a PICC
2. wash hair, sponge bath – haven’t been able to do this for the past 10 days due to the constant retching and puking!!
3. start taking small amounts of Pedialyte through the g-tube.