I had such high hopes for the new pharmacy I switched us to last week. When I originally spoke with the pharmacist she was polite, sounded knowledgeable and Christian music was playing as I waited on hold. Recipe for success right?
It took them two days longer to fulfill the script than I was originally told. Since they are closed over the weekend, this meant you went 5 days without your cholesterol. Strike one.
When I arrived to pick up the cholesterol, only 160 of 360 mls were ready. They didn’t order enough of the cholesterol to fill the entire month’s order. It’s inconvenient for me since they are out in Katy, but more than anything it concerned me about their calculations. How did they order less than half of what was needed? Strike two.
Then the cholesterol was in a soy oil solution rather than the cherry aqueous we always get. I know several choose the soy version, and I am not opposed to trying something new. But when I told her the medicine needs to be refrigerated, she told me it didn’t. I insisted it did, and she insisted I was wrong. Not only did she refuse to consider the possibility she might not be as informed about a medication she has never seen before and that I have been administering for three and a half years, but she spoke in an insulting and condescending tone. I am positive they teach that tone in pharm school. It’s an industry-wide standard. Clearly I am going to have to settle for a pharmacy who can get the medication right and just expect horrible customer service.
At this point I have asked the experts (the other SLOS mom’s) about the refrigeration issue and everyone agrees…it must be refrigerated and kept from light. I collected all of their answers and faxed them to the pharmacist as back-up with the numbers to contact the specialists if she needed further confirmation.
I’ll keep you posted. Ugh.
Wednesday, September 28, 2011
Tuesday, September 20, 2011
Scheduled!
We’ve scheduled your colonoscopy and endoscopy for the end of October. It took some effort but we managed to coordinate these procedures with your glaucoma EUA. Both require general anesthesia so I’m thrilled the doctors were willing to do them the same morning. Plus you will only have to miss one day of school now!
Tuesday, September 13, 2011
Perspective.
Today Grammy, Liam and I visited your school. We met all of your teachers, a couple therapists, and your classmates. Perspective is an amazing thing. I would say that of all your friends, you are most…developed? Advanced? Aware? I’m not sure quite how to describe it.
I’ve always thought of you as so severe in your syndrome. There is no denying that’s true. But today I realized it could be much worse. From what I can tell, there is more personality in your face and more laughter in your eyes than the kiddos in your class. I am 100% aware that the other moms would probably say the exact same thing. Because they are moms and somehow anticipate their child's every need, preference and emotion without any words being exchanged. They know their child better than anyone else ever will and can see things a passerby would miss.
Still. I am glad you are mine.
I’ve always thought of you as so severe in your syndrome. There is no denying that’s true. But today I realized it could be much worse. From what I can tell, there is more personality in your face and more laughter in your eyes than the kiddos in your class. I am 100% aware that the other moms would probably say the exact same thing. Because they are moms and somehow anticipate their child's every need, preference and emotion without any words being exchanged. They know their child better than anyone else ever will and can see things a passerby would miss.
Still. I am glad you are mine.
Plan of Action
Today we saw Dr. G for his perspective and game plan on these Audrey episodes. I explained to him everything that happened this time around and how it differed from past times. As I talked I could see more and more confusion creeping over his face.
To sum up our conversation, your symptoms are very unusual. He doubts it is CVS because of the white count—that definitely indicates infection. But he agrees viral doesn’t sound right either. A flare up of your Hirschprung’s only makes sense if we see a distended belly during these episodes—which we don’t. More than anything he says the high fever each time is the red herring. The blood could have been from a number of things…no way of knowing without looking. But even though he seemed a bit put out that nobody made finding the source of blood a higher priority (join the club), he did concede that finding the source of infection should take precedence because of the fever and white count. And he added that poking around with a scope isn’t ideal in that situation. So our plan now?
We have scheduled an endoscopy and colonoscopy. Sorry Shnook, I know that’s not fun. But at least it is not another colostomy, which is what my mouth wants to say. This may be all for nothing…the digestive tract heals quickly. But if it’s too risky to look while you are sick, we have no choice but to do it while healthy and pray we find something. Or rule some things out.
I still haven’t abandoned the idea of CVS in the slightest. Maybe high fever isn’t typical (although online it says fever is a normal symptom—and when is “online” ever wrong??) but you make stuff up all the time Audrey. You aren’t even a typical SLOS case, and when I mentioned that to Dr. G, using your hydrocephalus as an example he smiled and agreed, “She has them all beat.”
Way to go Audrey. ;-)
To sum up our conversation, your symptoms are very unusual. He doubts it is CVS because of the white count—that definitely indicates infection. But he agrees viral doesn’t sound right either. A flare up of your Hirschprung’s only makes sense if we see a distended belly during these episodes—which we don’t. More than anything he says the high fever each time is the red herring. The blood could have been from a number of things…no way of knowing without looking. But even though he seemed a bit put out that nobody made finding the source of blood a higher priority (join the club), he did concede that finding the source of infection should take precedence because of the fever and white count. And he added that poking around with a scope isn’t ideal in that situation. So our plan now?
We have scheduled an endoscopy and colonoscopy. Sorry Shnook, I know that’s not fun. But at least it is not another colostomy, which is what my mouth wants to say. This may be all for nothing…the digestive tract heals quickly. But if it’s too risky to look while you are sick, we have no choice but to do it while healthy and pray we find something. Or rule some things out.
I still haven’t abandoned the idea of CVS in the slightest. Maybe high fever isn’t typical (although online it says fever is a normal symptom—and when is “online” ever wrong??) but you make stuff up all the time Audrey. You aren’t even a typical SLOS case, and when I mentioned that to Dr. G, using your hydrocephalus as an example he smiled and agreed, “She has them all beat.”
Way to go Audrey. ;-)
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!!
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!!
Thursday, September 1, 2011
Waiting on a Miracle
A chorus from a children's song I haven't heard in 20 years has floated back into my head and camped out there all week. It says:
"I anticipate,
the inevitable,
supernatural,
intervention of God.
I expect a miracle.
I expect a miracle."
I have no idea how the rest of the song goes. But Audrey, spread the word. We are expecting a miracle.
Read all about it HERE.
"I anticipate,
the inevitable,
supernatural,
intervention of God.
I expect a miracle.
I expect a miracle."
I have no idea how the rest of the song goes. But Audrey, spread the word. We are expecting a miracle.
Read all about it HERE.
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