What a month!
I hardly know where to start. So here is a timeline of events to begin, and as an update for our family and friends:
I would say about the first week of February Eleanor's poor sleeping began showing signs of something being "off." I began saying to Brian, "I think Ellie might be out-growing her medicine." Those first three weeks of February I'd say we had at least 5-6 mini episodes (feeling sick enough and in enough pain that she needed to lay down and take a zofran). Her sleep was not great, waking up early in the evening almost every evening and more and more asking for her zofran.
Two and half weeks into February I called our GI and left a message with his nurse asking if we could try upping Eleanor's daily med dosage. I didn't think he would agree. I mean, would a doctor really increase a rather serious medicine dosage just because of a mom's suspicion that her kid has outgrown it? I never heard back from the GI office so I thought my suspicion was correct, that he wasn't going to change meds because of a worried mom. As it turns out I was wrong. I found out later, during our hospital stay I think, which at this point is still days away, that he had agreed to my request. He had noted in our last visit, in January, that although E hadn't gained much weight, she had grown more than an inch and a half since September! And he thought my suspicions were right on. I knew I liked him. Problem: the nurse never called back. He just wanted an EKG before increasing the dose, which is a normal check before upping this medicine because it can mess with your heart. I can't help but wonder if all this would have been prevented had we increased her dose that week. Ugh.
The third weekend in February we went to Grammy and Papa's house in Wisconsin. We had lots of fun but on Sunday morning Ellie suddenly felt quite ill, sat in the bathroom while I got her medicine, we did deep breathing until the horrible part passed, then she climbed into bed (at 9:30 in the morning) and slept for about a half hour. Very odd. After we drove home that afternoon she was back in her bed, saying her stomach hurt again. Another zofran. More oddness.
The next morning she woke up feeling sick, asking to stay home. More zofran that day. During days like this, she plays, watches TV, reads, colors...doesn't eat much and feels "yucky" off and on. We lay low but it's not like she is laid up in bed. We always think, 'well maybe she is better' by the time we go to bed. But alas...
That night, technically Tuesday morning, about 1am she woke up and quickly vomited. We did a zofran but less than an hour later she vomited again and so it went for the whole night, lots of vomiting. I tried all our big gun tricks from the wizard of CVS, Dr. Li: migraine medicine, sedation meds, etc. My poor girl was miserable and by 5am was begging to go to the hospital. Unfortunately (or fortunately, depending on which doctor you talk to) she is completely aware that the IV makes a HUGE difference for her. This isn't uncommon for CVS kids. I mean, each story, each child is different, but some kids just respond super well to massive IV hydration (there is other good stuff in those IV's too that they give to CVS kids). Ellie has a fear of putting the IV in, what kid doesn't, and so when she is begging for it, that's a good sign for me to call her GI doctor and ask about an ER visit.
Side story: my poor husband lost his job in January. He didn't do anything wrong, the company is dying. No severance pay, a very scary time for us. He got a new job in less than a month! An employment miracle. Sadly though insurance doesn't kick in for 60 days after his first day of employment, and sadly Ellie's episode was happening on his SECOND DAY of his new job. Clearly he can't call in sick his first week of work and we had just signed on to some crappy, temporary insurance program because COBRA is so crazy expensive. Another way of understanding my mentality at 4am on February 24th: OH SHIT! OH SHIT!
It's not possible to put into words how generous and loving my parents are. I texted my Mom, who lives 3.5 hours away, at 4am:
"Umm, I'm sorry, I hope this doesn't wake you, but whenever you do wake up, I was wondering if you would ever consider throwing some clothes in a bag and coming down here. This is it. We need the cavalry. Ellie is in a bad, bad way."
Her text back about 2 minutes later: "Of course I can! I'm on my way!" I could write a whole blog post entitled, "What the hell would I do without my Mom?!" By 6:30 I had called my dear friend who lives in our building. Colin was heading over to her condo and Ellie and I were getting in the car to head to the hospital. This is the first moment of this story where I experience a wave of relief and thankfulness. This is also the time when I began inundating my Facebook page asking for prayers and good thoughts--I have world's best FB friends!
I don't know if it's because of the time of day that we usually arrive, or just because they feel bad for puking kids, but we have never had to wait more than 15 minutes in our ER when Ellie is sick. AMAZING. More relief, more thankfulness. Within about 30 minutes, maybe an hour, the IV is in, and Ellie has fallen asleep amidst a whole lot of ER noise.
After a few hours she is clearly tired, still looks a little woozy, but smiling and chatting up a storm with anyone who wants to listen (she LOVES the special attention from the nurses and doctors). So we talk about going home and they feel it's best to check in with her GI doctor before that. He says he wants her admitted, to be observed for 24 hours before release. I knew this was a possibility. We waited for what seemed like forever (note: I had been awake since about 12:30 am and I was so hungry and so tired) and then headed upstairs.
Ellie didn't sleep at all that day in the hospital. Her anxiety (even when shown primarily through the ability to stay awake) is remarkable. They began her sedation drugs around 4pm and at 8pm she was just beginning to fall asleep! This is the part of the story, one of the few moments, when I was pleasantly introduced to
Ellie on Drugs. Oh my gosh, too funny!
Ellie slept through the night, they continued the zofran and sedation meds every 4 hours. She had a few bites of toast and melon for breakfast and around noon her GI came to check on her. Unfortunately, he made the mistake of saying in front of her, "It's a common mistake to send CVS kids home early and have them need to return, but I'd rather make that mistake and get you home instead of have you stay in 'jail.' You know?" I agreed. I was a little nervous but she made it through the night so that must mean she is ok. Eleanor on the other hand, well, she done did lost her little mind after he left that room. I have NEVER (since she was a baby of course) seen her cry so much in one day. Whoa. Maybe it was the exhaustion, maybe it was the crazy medication she was on, but she did NOT want to go home yet. Her tummy still hurt and she was scared to death to go home and have to go through this whole thing all over again. Here comes another blast of super thankfulness...
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| Her obsessive reading was super helpful for a hospital stay. |
Thank goodness the pediatrician who was on duty that day, on the pediatric floor, felt that while she agreed Eleanor should/could go home, she believed that it would be good for Eleanor to have some control over the situation. She agreed that Eleanor knew her body the best and in the end she agreed that if Eleanor needed one more night to recover, well that was ok. THANK GOD THANK GOD for loving, kind, thoughtful doctors. Phew! I mean, how many doctors out there sit down and contemplate the emotional/physical connection and the well-being of their patient in quite that way. And, thank goodness because at about 1am that night, Ellie woke up vomiting and in pain again. :-(
That is how the next two days went. She would look better and better as the day went on, we would contemplate going home and then at night it would begin again. Another wonderful moment:
When we went to the CVS conference last summer we got to have a one on one meeting with Dr. Boles. He is sort of a famous Cyclic Vomiting and Mitochondrial doctor. Anyway he told me about an article he wrote for a medical journal that had the information needed for doctors to check and see if the medication that Ellie was on was at the right levels. I looked for that article and in the fall showed it to our GI doctor here. We increased her dosage based on that article and Ellie had the best fall/winter that she had ever had. Well, in the hospital, on day 3 I think, I shyly pulled up that article on my phone and literally handed my phone to the head pediatrician at the hospital, nervously, not sure if this would upset or offend her. NOPE! She scanned on my phone for a while and then went back to her office to print and read the whole article! And after she read it she said, "Thank you, that was really quite a good article, and helpful." MORE THANKFULNESS. Based on that article they decided her blood levels needed to be checked and they also decided to call the Milwaukee clinic.
By Friday morning the doctors here had gotten in contact with the CVS specialists in Milwaukee and a new medicine was suggested to add to Eleanor's nighttime regime. Also by Friday the new plan was for us to go home Saturday morning and do the nighttime vomiting management on our own. The sad and scary reality is that there are plenty of CVS patients who go days and weeks enduring this sort of episode. At least Ellie's pain and vomiting was just at night and fairly manageable with IV and meds. Some people with CVS literally vomit for hours on end with no relief. Anyway, we stayed on Friday night and acted as we would when we were at home.
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| Acting "normal" on Friday night, with Daddy. |
No IV and no IV medicine, when she began feeling sick I would give her the abort meds, just as I would be doing at home. Friday night at the hospital was just to be sure that we could abort the vomiting on our own, without the help of her IV. Friday night was also the night we started the new medicine suggested from Milwaukee, and Friday night--no vomiting. Slept through the night. Of course, we have no way of knowing if it was the new medicine that made the difference, the increase in her other nighttime medicines or simply that the episode was coming to an end. However...
Saturday we went home, relaxed, went to bed and she woke up feeling sick in the middle of the night. I gave her a big dose of zofran and she was back to sleep within an hour.
Sunday we went to a movie, relaxed, packed her backpack for school. Sunday night she woke up as usual but didn't feel sick.
Monday she asked to stay home. Bad pain in her belly. Played, colored, read... but wouldn't eat lunch. Vomiting by 3pm. By the way, daytime pain and vomiting are so much less traumatic than middle of the night, for us at least. After being sick I gave her medicine and she was acting totally fine again by bedtime.
She hasn't vomited since. She has been tired on and off throughout the week, but no more vomiting and yesterday she looked and acted more like herself, more than I've seen in a few weeks. After Monday, the remainder of the week was spent slowly getting Eleanor back to school. In the next few weeks we will have to have a few follow up tests and appointments. An EKG to check her heart, a blood test all the way up at the Milwaukee clinic because there are no labs around here that will check for one of her blood levels that we need to check, and a follow up with her GI.
I have other more interesting posts in me, reflections and thoughts about this latest and longest episode, but here is the timeline. Glad it's done. Glad to be home. Hoping our next episode is a long way off.
