I’m sitting in a dark room next to Hana’s hospital crib back at Stanford. It’s been all about hospitals today, the day after Christmas. In hindsight, I probably should have taken her in last night but we wanted so badly to have a Christmas not in the hospital!
It all started the night after her Cath Lab/biopsy, right after my last post, Heart On The Edge. That night I started to feel like I was getting a stuffy nose. The next morning I woke up feeling really awful. As the day went on I felt worse and was worried I was getting the flu, so Paul came home from work early. I felt terrible for three days straight. Then on Sunday I woke up and suddenly felt like I just had an annoying cold. This relates to Hana in that I may have been less observant as to when her sick symptoms started or less vigilant with her hand hygiene.
Hana did not get what I had (still have). Instead, she started off really cranky (but she’s a toddler, right?). Then her appetite slowly went away (toddler’s have picky eating spells, right?). She started having diarrhea, but not much (her Cellcept causes mild bouts of diarrhea from time to time). But after a few days it seemed like a new pattern had emerged outside all that could be normal for Hana.
So, I called Stanford on Wednesday morning to find out what they thought. I was thinking that perhaps Hana was just very sensitive to the steroid wean as we had just gone down again on her dose. But they thought the decrease in dose was so tiny it shouldn’t cause these side effects. Nevertheless, we made a couple of medication adjustments and I was instructed to call back with an update early Friday before the holiday weekend. But there was no change and after talking with one of the cardiologists she felt it was time to see Hana’s regular pediatrician.
Off to the pediatrician we go and she thought Hana had a mild GI virus and any other kid she would just send home to weather the storm. After much back and forth with Stanford we came up with a plan. Unfortunately, on Saturday, Hana vomited a couple times and I call Stanford who tell me just to wait it out as long as we feel like she’s keeping up with her fluid intake and not getting dehydrated.
Then it’s Christmas Day. A pretty subdued Hana opened a few presents and played very quietly. She stayed on the couch and mostly just seemed like a normally sick kid. She didn’t have diarrhea and she only gagged and spit up a tiny bit once. She ate a piece of toast. But by the evening it’s clear she’s pretty uncomfortable and irritable. She has only sipped a bit of water throughout the day and peed only twice. This is probably when we should have taken her in but I felt that if we could just hold off until the morning and get her blood work we would know more.
This morning, Monday, Hana woke up with a dry diaper. I took her to the lab for bloodwork and after an hour and three pokes but no blood they told us to come back the next day. Hana sucked down two small juice boxes. Back at home I called Stanford and they decided it was time for her to be seen. I packed some bags. Hana threw up all the juice she drank. We walked down to the Kaiser ER. There they assessed her and started working on getting an IV started. Eight pokes later they got an IV and a tiny bit of blood for the lab. It was no fun. The NICU nurse was the one who finally got the IV.
Hana got some IV fluid and some IV dextrose while we waited to be transferred to Stanford. She also got some IV Magnesium which made her very, very upset. Then she threw up a tiny bit and had a lot of diarrhea so they stopped it. Part of me was hoping they would somehow miraculously decide that we can just stay up on the pediatric floor at Kaiser and not have to make the trek to Stanford. But I also know this is very wishful thinking, they really like their heart failure and heart transplant patients to be at Stanford.
The ambulance ride to Stanford was uneventful. I was dreading being back there. Not because of the hospital or the people, it’s like a second home, but because I just really want this part of our lives to be over. When Hana arrived on the unit she got a warm welcome that I think really surprised the unsuspecting transport team but I think it helped Hana feel better about being back.
We got settled in and Paul arrived with more necessities (he had stopped at home to take care of loose ends and Poppy). Hana had an echocardiogram done by the cardiology fellow (this seems to be the new normal any time she has a symptom that could also be heart failure, which is pretty much every sick symptom except coughing, sneezing or sore throat). Her heart looks fine. She eventually perked up and nibbled on some toast, crackers and pickles.
Here we are again. But different. Thank goodness. It’s been a rough couple of weeks. But it’s still nothing compared to this time last year. At the Kaiser ER people (staff) kept saying, “Wow, what a stressful day.” or “You guys are so calm and patient.” Today is nothing compared to many days we’ve endured, thankfully. I just hope it all passes quickly and uneventfully. Maybe I can even hope we can go home tomorrow! Then we might finally get to send out our Christmas cards!
Hana is such a trooper and incredibly tolerant and patient. It’s really remarkable how she handles everything.