Saturday, September 10, 2011

Home Away From Home

Thursday morning started off with some excitement…and not the fun kind. I’m talking about the sick, exhausted, worried kind. At 1am we woke up with you throwing up. I figured it was just your normal throw up because your tummy was too full, so Daddy and I vented your tummy to remove some gas and found dark brown stomach contents. Knowing you had skipped nighttime meds, I couldn’t imagine why that would be. I had three ideas. Bile somehow gone awry, stool backed up (is that even possible? I felt like you had been moving towards constipation so this seemed most likely to me), or blood. Regardless, I didn’t feel good about putting it back in your tummy, so we poured it out and switched you to water—out of Pedialyte. Back to bed for a solid three hours until you woke up again at 4am.

This time you vomited dark brown mucus. It didn’t have a smell, so my new leaning was blood. That seemed even more likely when it dried reddish. Your temp was 102.6 under the arm, very high for us with an avg of 96.7. I didn’t know what was happening with your stomach and didn’t want to give you a fever reducer. After about 30 minutes of constantly vomiting blood we decided we had to go to the ER.

I would have loved for just one of us to take you and someone to stay with Liam. But with how much you were vomiting, we knew everyone had to go so that you could be suctioned along the way. We woke up poor brother, who was very sweet despite the hour, and packed ourselves up. 30 minutes later we were finally ready to go.

Miraculously we arrived at TCH West Campus without any throwing up along the way…but a lot of close calls. With only one other girl in the waiting room, we were seen within 5 minutes. Daddy filled out the paperwork while you laughed. Laughed! Audrey, I hate making these judgment calls on whether or not to take you to the ER because that is exactly what I am afraid of. That we will get there and you will feel better, and then they will never let us leave.

At this point we were committed, and it was still the blood that I was concerned about. Never before has that happened. So we were called back and your vitals were taken—new temp of 103.5. I changed your diaper for the weigh-in and found blood in your stool. It was the right decision to take you to the hospital. Too many factors were different than your usual Audrey episodes.

They took several vials of blood to test for numerous things. I won’t even go into that saga, but despite the digging around for your vein that it took, your bruising was minimal. Next was the IV…much better. Started you on fluids and Motrin through the IV. We saw the doctor and I explained my theory that this was always based on constipation. This always ends in a huge, toxic smelling BM and afterwards you feel 100% better. I asked for an abdominal x-ray to confirm or deny. They obliged.

After a bit of a wait the doctor came back with all the results. Not constipated. Ugh. That would have been so simple!! Now I have no idea what causes this. (Side note: this was the one time it didn’t end with a BM so Daddy made a good point in saying we aren’t sure that wasn’t the cause all the other times. Now we haven’t even ruled out the constipation!) White blood cell count was high...I think she said 43,000. Between that and the blood, we needed to go to TCH main campus. So an ambulance was called, Honey picked up brother, and we headed to our home away from home.

There I explained your symptoms, my theories, and we did more tests. CT and x-rays to make sure your shunt was fine (it was). The doc wanted to tap the shunt to check for meningitis and I said no. At that point your fever was down to 98.7. I told her meningitis doesn’t add up, because shouldn’t the fever be back by now? She attributed the lack of fever to the meds, but your one dose was 7 hours earlier. I held my ground. She brought in the attending for back-up. I held my ground again. They brought in the neuro-surgeon for back-up. He was on my side. He said tapping the shunt would create more problems and risk of infection than it was worth. Score one for Mama.

Except then the resident and attending came back and told me that neuro was fine with doing an LP (spinal tap). Of course he was. Daddy and I asked them to tell us exactly what they hoped to accomplish by doing an LP, and they explained that it could reveal other viruses that may be the problem. This is too cyclical for me to believe it is a virus you catch each month but I suggested a compromise. Since their concern was the white blood cell count, I asked to repeat the test to make sure the count didn’t come down with your fever. They agreed, and the blood draw was painless since the nurse just pulled back on your IV.

It was still high (38,000?) so we did the LP. Rather, they did the LP while Daddy helped and I went to get a drink from the food court. You had an LP while in the NICU and I left for that one also—I have never chosen to leave for any other procedure. Not sure what it is about the LP that makes me nervous. Maybe it is because I had a bad experience with an epidural once.

Anyway. It wasn’t until AFTER the LP was performed that we were told the results wouldn’t be available until 24 hours later. And you guessed it, no way can we leave until those come back. In the meantime, your fever was essentially gone, you felt fine (although maybe a little worn out from the poking and proding) and you had not vomited a single time since we left the house. Still some blood in stool and whelps popped up on your body (why not?) but overall, you were in good shape. Nevertheless, we were spending the night.

You were moved to a private room, and Daddy stayed with you, sleeping on the couch. I went home to sleep so that I could see Liam, bring back a change of clothes and other essentials for Daddy, and get a good night’s rest.

Ha! The good night’s rest didn’t happen, but that is a story for Liam’s blog.

The next morning I got back to you and Daddy as quickly as possible, and found my girl in great spirits. I climbed into the bed with you and the three of us just spent a quiet day together. The results came back on your LP—clean. I knew it! But at least now we have ruled out several things, and I can reference back to it next time they want to do another. GI came to talk about the bleed somewhere along your digestive tract. I highly doubt that this was from irritation to your esophagus due to vomiting. The blood was there from the get-go. It didn’t occur after several rounds of vomiting. And I have never seen blood despite 3 years of almost daily vomiting. I’m not saying it’s impossible…I know your esophagus can erode over time or suddenly have a tear. But I have a few other ideas to explore in clinic with GI. We have a GI appointment on Tuesday that I apparently scheduled 6 months ago and knew nothing about. Coincidence? I don’t think so. Bet we (I) decide a scope is in order sooner rather than later.

I asked every single doctor we came into contact with if they could think of something that would be so cyclical to cause these vomiting episodes every month or so. Nobody had any ideas…all anyone came up with was that you just happen to catch a virus on a routine basis. Except for the last GI doctor we met. At the wording of my question he gave a little laugh and said there happens to be something called…brace yourself for this one. Seriously, get ready. Cyclic Vomiting Syndrome (CVS). Are you kidding me? This man is the first to think of this? When I typed “cyclic” into my search engine to research it later, Google (I love Google) automatically filled in “vomiting syndrome”. I Google EVERYTHING I am slightly curious, why didn’t I Google this? It never lets me down.

Fever, vomiting, diarrhea, and usually accompanied by migraines (we wouldn’t know if you had one of course, but I wouldn’t be surprised). Each episode usually occurs at the same time of day (for you during the night), lasts the same length of time (yours are 12ish hours), and is about the same level of intensity (INTENSE). Triggers can be colds, hot weather, motion sickness, or emotional distress. Audrey. He felt like this was a long shot, and maybe it is. But it describes you perfectly. It looks like the main treatment is learning the triggers and preventing them, but there is also a med our doctor mentioned. I am all over that. I’m going to insist we try, because we need to figure out a way to prevent these Audrey episodes!

Unfortunately it is a difficult diagnosis with no definitive test. It is more a diagnosis of elimination with a pattern needing to be established with the doctor. Hence, this post. And all the posts to follow with detailed information about your sicknesses. Daddy has already created an Excel spreadsheet, and I love him for it. But Excel doesn’t get along with me as well as it does with Daddy. So this is my new “Audrey Episode” journal. I know you won’t mind the boring, medical, sometimes personal posts if it means avoiding your monthly illness.
Going to the hospital, I felt like if we could get some answers, everything would be worthwhile. 36 hours later I was convinced it had all been a huge waste of time (not to mention your comfort), but this last doctor walked in and gave me a glimmer of hope that some sort of resolution was in our future.

I’ll let you know how our Tuesday appointment goes. I love you Audrey Boo, and I am so glad we are all home together again!!

1 comment:

Nancy Yetter said...

What does "tapping the shunt" mean?