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Monday, November 30, 2009

In hospital...again

Ellie is in hospital again. Same symptoms, the sudden ashen face, discomfort turning into fatigue and vomit. Instead of taking her home from school to sleep, I took her to the ER. She was then admitted to the neuro wing. Turns out there is this new MRI machine that can take a quick (5 minutes) and more accurate image of the ventricles...saving Ellie a whole lot of radiation. Apparently they have been using this for quite some time, but it is the first time we have heard about it. I am thankful to have found out. The reason we haven't heard about it before, though we have numerous ER visits that include CT scans, is because they only have a very small number of machines and limited hours of operation... Are you kidding me? So much there for another post.

Anyway, she is in for the night with Dada and will get the new MRI in the morning under slight sedation without intubation - which is a big improvement and sans radiation. It's still not clear if this is an abdominal migraine, regular migraine, brain deep seizure that doesn't show up physically nor in any EEG, acid build up or a malfunctioning shunt. 6 hours into our ER visit, Ellie spiked a fever.

There it is. I am home tonight alone in a quiet house, running Ellie's vomit covered clothes through the wash and cleaning up from the morning refuse. Putting her morning cereal bowl into the dishwasher feels a bit surreal. It's weird to be here at home, alone without the people who matter most. It's survival. Dave and I trade off sleep all the time, but it's weird, in a weird just not right kinda way.

Other than that, I am too tired/meh/raw/numb/notsurewhat to proffer more than the facts.

Friday, November 27, 2009

It's a Mystery

Sometimes I think my blog should be called something like "All the Gory Details" or "A life to make you grateful for yours" or something like that. It's the outside in thing. I have stopped hoping for people outside my world to understand. Those that will, will, and those that won't never will no matter what I write or what they see in pictures. How's that for a cynical view of prejudice? It's true of my students as well. Some are there in the Master's program to learn, some are there just to get a degree. I have trouble with the latter since I love my profession and take a personal approach to teaching such that I still care if they get it or not. That hasn't been driven out of me yet...this is turning into a cynical post and I digress.

What this post is really about -back to the gory details part- is the last few months and the conclusions we have come to. Ellie has been having a very hard time on a few fronts since August. 2009 has been the year to get off meds. Lots of calculated risks and believing in my understanding of my Ellie versus what the medical community has to say. Since January she is off: Cisipride for Reflux, Depakote for Seizures, Protonix for Reflux, and mostly off her Zantac. That's a lot of change.

Since August she has not been sleeping well as you may have heard. We thought it was her brain adjusting off the Depakote- and so it may have been initially. Then when we had the mishap with pharmacy we pulled the protonix - which is a proton pump inhibitor. Then we realized that she was growing out of her g-tube and the bad pool water at her school and possibly some sand from all the beach going in the summer just made it worse. We tried two different sizes of G-tube and nothing worked. Then she started to have these episodes - one in August, two in September, two in October and then a week later in November where she would vomit and then not want to eat and not hold much down and be very sensitive to light and sound and irritable and exhausted. She has missed more school because of this than not. The whole episode would last for 4 days. The last day and a half where she would be doing better but just exhausted from the first two and a half days.

She missed a lot of school. I missed a lot of work. The world keeps moving forward at the most unforgiving pace.

She also turned 7. I need to do her annual montage but that will have to wait until I catch up a little more and until she gets on track.

The day after her birthday on November 10, she vomited, was exhausted, would want to play with her musical toy but the minute she held it would push it away and bury her face in my chest. Holding her didn't help. She didn't want to eat - but unlike a stomach virus - was able to hold down small volumes of rich food- avocado and coconut kefir to be exact. She would vomit up anything else. So the tummy bug / back to school virus was not holding water any more.

Then on Tuesday night she was up all night - screaming. Why we didn't bring her to the hospital at 2am when the worst of it was going on I have no idea. We did check her eyes and they dilated fine and evenly. She wasn't vomiting. She was just in pain. At 8am I brought her to her pediatrician. We realized that this was not a situation we could handle at home anymore. It wasn't some sort of repeated virus and it wasn't her g-tube - which was still in rag order because her stoma for the first time in six years was not healing as it should. But this was something else.

The pediatrician looked in her ears, eyes, throat (making her vomit) and looked concerned when I reported Ellie's weight loss which was roughly 5 pounds since August from so many weeks of these episodes. She had, had a little roll around the waist and some meat on her arms but now she was very thin.

Upon discerning that there was no ear, throat infection, no swollen glands no rashes and all the usual suspects he sent us across the street to Children's ER. In the ER they put in an IV (God bless all Nurses who are good at IV's on an ex-preemie's veins) did a shunt series and a head CT. They are very efficient there and got Ellie in a small dark room right away which was good considering she was still in a lot of pain. I chose not to giver her Tylenol (which I had been giving her when she was having these episodes) because I didn't want to mask any symptoms - because at this point we thought it was her shunt.

They gave her Zofran for nausea and this allowed her to sleep. We saw the neurology team, the neuro surgery team, the pediatric attending. The scans came back showing nothing. Theories were thrown around. The attending pediatrician said Migraines. I called Dave who was at work and asked him to search migraines. He did and found many, many reports of people who were long time users of proton pump inhibitors (prilosec and protonix) developing migraines either after quitting the drug or if they were over 3 hours late in taking their dose.

The problem was that because of Ellie's history and complex shunt system, no one wanted to believe the migraine diagnosis. The young Neurology resident was annoyed at the Neuro Surgery team for writing Ellie off so quickly, he was sure it was intercranial pressure.

They admitted her Wednesday night after 10 hours in the ER. I said I did not want to take her home with all of this going on. It was beyond our ability to help her because we were trying all the things we usually did and she was in pain and not eating and the weight loss had to stop.

They were reluctant to feed her if she was facing a brain surgery, so they kept her on IV fluids with some sugars in them and electrolytes. Dave and I took turns staying with her. She was there to be observed, hydrated, and tested. All her blood tests came back normal. White blood cell count was normal and not elevated which ruled out infection. They did a 24 hour EEG that came back normal - which was excellent because it ruled subliminal seizures. The nutritionist took away my print out of Ellie's diet with all the proportions and exactly what Ellie is given each day and gave it a full analysis. The very cool news is that Ellie, when she isn't sick, is getting 1,700 calories a day, enough fat, vitamins, and protein. Go figure and not any synthetic formula doing any of that. I have to say nutrition has come a long way since we first went to them at Children's in 2003. Then they thought we were nuts to go on whole foods. They had us try every formula in the book and when those formulas made Ellie more sick they said we were administering them incorrectly. It was Linda Scotson who gave me the guts and the know how to transition Ellie on to whole foods.

But this time the nutritionist looked at Ellie's diet and didn't bat an eye. She knew what coconut kefir was, shared the same concerns about Hemp and did the research on that for me. She was awesome. She respected our values. AND she gave me a great resource I have on order about homemade blended formula. She had a few suggestions and then she put in writing her results such that I had medical proof I could give to Ellie's doctors to show them that I wasn't starving her of protein and nutrition because she wasn't on pediasure or meat. By the way turns out that Hemp milk is very low allergen and one of the most bioavailable proteins out there. I put Ellie on it to replace some of her rice milk and she is doing beautifully. It was easily the best experience I have ever had with a nutritionist. And it was very validating. Dave when I showed him her report said, "Oh thank god! That's a relief!" I think now he might actually believe I knew what I was doing...

Our hospital stint did garner these two good findings - the normal EEG and the blessing on Ellie's whole foods, food combined diet. But it still did not answer what the heck was causing Ellie so much pain.

It came down to two camps. The migraine camp and the sub-optimally working shunt camp. The test they wanted to do to prove it was the shunt periodically malfunctioning was to put Ellie on Diamox which would reduce her body's production of Cerebral Spinal Fluid, such that if she was having intercranial pressure her symptoms would stop. The doctors who wanted to do this said there were hardly any side effects to the Diamox, but if you Google it you will see that is wrong. AND what if it isn't her shunt? What if messing with the amount of precious CSF bathing and protecting her brain could make the shunt clog? It was so difficult to get Ellie's shunt system working to begin with (4 surgeries) that I was very leery of this. Dr. Lillianna Gumnerova, who is Ellie's neurosurgeon and an attending at Children's, came down and examined Ellie and looked at all her scans and was very clear that if it was Ellie's shunt her symptoms in between episodes would not totally abate. Malfunctioning shunts just get worse. Since this is where she lives, we were inclined to believe her. She was also the only doctor out of all the others who was able to get Ellie's CSF to drain properly to begin with so she looms large in our world.

The other path was to try a drug called Periactin for migraines. A friend and a mother of one of Ellie's school friends told me about it. Turns out that antihistomines are great for migraines and this one especially. Also, it's a really old drug - tried and tested and the side effects are minimal. Ellie's pediatrician was coming by a few times a day to check on Ellie, which is how concerned he was and he's awesome! He is the only doctor that crossed all the teams. And they listen to him there. He wanted to go the Diamox route and knowing him and trusting him as I do and respecting him too, I asked him about the Periactin and couldn't we give that a try first? It takes a week to kick in, which will be this Sunday. He agreed with the understanding that if she had any symptoms - vomiting or the massive fatigue that we were to bring her straight in. This was the plan when we left on Friday night. So instead of driving to Virginia for Thanksgiving with my family we stayed put. My same friend who recommended the Periactin also invited us over for the holiday and it turns out she could give Martha Stewart and any Iron Chef a run for their money. Definitely one of the best Thanksgiving Day meals ever!

Ellie has seemed a little tired which is one of the two side effects they said she would have. The other is greater appetite. She has both. From Saturday till Wednesday Ellie slept better than she has in months. She is keeping all her food down. She was up Thursday at 4am because she was hungry so I gladly fed her. And she has been playing like there is no tomorrow. It's like she has to catch up. She wanted to sit in her princess couch and play with every toy she owns. She is not quite back to herself yet. She still is slightly irritable and the overhead lights bother her a lot. This Sunday it will be one week so we will see if the symptoms abate with the Periactin at its full effect. If that does not work we will either try the Diamox which still worries me or I will push for an MRI. That's invasive for sure because they have to give her anesthesia and intubate but much less invasive than exploratory shunt surgery and might weigh equally with the Diamox trial...maybe - putting a kid under is hugely hard on the body...ugh. I hate these choices we have to make. In the mean time I am working to feed Ellie as much as she can take. Her little feet even lost weight such that her AFO's are too big and she went down a diaper size. It was a year's worth of weight gain and all the moms of preemies out there know what a bummer that is.

That is how it's all going these days. We are feeding her, watching her, staying close to home and hoping for migraines. How crazy is that? Wishing that it was a migraine.... This whole experience is about picking the lesser of two evils. If it is migraines then hopefully in a few months they will abate if they are from the protonix withdrawal though migraines do run on my side of the family. And for the doctor that said that migraines don't last as long as 48-72 hours - you are so wrong.

All of the above is why I think I may change Ryn Tales to "All the Gory Details" (you never wanted to know).

At the end of the day I am very thankful that Ellie is here and that for now it looks like her shunt may be ok. At least we have a game plan or two and thank god for the wonderful medical community that does disagree in a healthy way and especially thank god for all those doctors that do listen to parents (nutritionists too). Ellie is better because of all of them. I am grateful too for my friend Holly who is so smart and gives me verbal and moral ammunition when I am out to push back when I need to, because it seems like I need to a lot sometimes, much more than I would prefer.

Ellie turned 7 this November 9th. She it still learning and growing and developing and the sweetest little girl. I am thankful I get to be her Mama.

Wednesday, November 04, 2009

Second Wind

Pictures in order: 1. Ellie watching the Red Sox batting practice behind home plate where she got to hit the ball of the T this summer. 2. Ellie in New Port RI laughing at the man at the next table who is eating a big salad. He pretended not to notice that she was laughing at him...must have been from Boston. 3. Ellie at the Getty. We took her there many times before we left LA when she was only months old. It's a lovely place. Very peaceful with all that Travertine and dry desert air. 4. Ellie in her tent on the beach at Carmel. The water was so cold it put her off swimming for a bit. But she loved napping and laughing in her tent. The lack of sleep was less wearing on her. 5. Ellie as Snow White right before Trick or Treating. 6. Ellie in the morning as Snow White going to ballet class. She was basically Snow White all day. She loved that costume. Thanks to Liz who gave Ellie a lend of it! 7. Ellie carefully sampling a taste of the first Apple Pie she has ever made with her Dada. I put these pictures first, lest you should feel sorry for us after reading the post. It's amazing all you can do on no sleep whilst worrying. ;-)

It's been a long few months since August when Ellie went off her seizure meds (fully - we weaned for 6 months). I thought she would NEVER sleep again and if you have been reading Ryn Tales for any length of time you know how I feel about sleep or the lack there of...

Sometimes too it's just one thing after another. Luckily, in our case, these have been necessary things that have led to better days today - a better present. Here is what happened.

The last week of August Ellie was fully off her seizure medication Depakote during that same time her Protonix (a proton pump inhibitor that she used for reflux) was late getting to us. Needless to say, our vacation to California was a sleepless one. We had fun, but it was exhausting because between the reflux and Ellie's newly med free brain, we were up a lot....which took some of the joy out of it for me...seeing Big Sur through sleep deprived eyes was a sad thing. I know that sounds like whining and it is. I had a different idea of how I wanted the trip to be, but the powers that be, in a constant effort to keep me humble, had other ideas.

We finally got the protonix - which is compounded during our last week in Los Angeles. We got home and school started the day after labor day and Ellie was still not sleeping and vomiting and for the next three Thursday's she would come home from school due to vomiting and fatigue and be sick all day Friday and then recover on Saturday. Or mostly recover - she was a bit pale and something was not right. She still wasn't sleeping and all I could think of inwardly at her brain was for the love of God please rewire yourself up something quick please! To add insult to injury, her g-tube site started to rapidly break down like it hasn't since she first got it at -1 month (preemie moms you know what I mean by that!). Her open, cracked weepy skin that would make her scream like I have never heard her when the acid from her stomach would hit it. It was horrible, really horrible.

After three weeks we started to figure it all out. Here are the major things that were happening

- As I wrote about here the Protonix was bad...I still have not sent it to the lab to find out. BUT she is off it completely - that is the good that came of the pharmacy screw up.
- The pool water at the school was making her very, very sick.
- She outgrew her g-tube! Which makes sense since she has had it for nearly 7 years.
- Last week Ellie was out all week with a tummy bug and fatigue but no fever.

Perfect storm don't ya think. Good times.

All of this added up to a whole lot of late nights and me having to push my work till the evenings when Dave came home and weekends and I am still behind schedule.

We are truly blessed though. Our next door neighbors are both nurses and we called upon them. She is the uber wound care nurse at Children's Hospital Boston and got us Mitrozole powder and when I sent her a picture of Ellie's g-tube site was able to eyeball right away that it was too small and that Ellie needed the next size up. We could not have picked better neighbors, truly. It took a couple of tries, even though, we went in and got it measured for the docs to get the proper size. But we did and it's finally healed (she writes on November 4 - which means Ellie suffered since August with this!). Sigh.

I am also very relieved that she is able to be off a compounded med. People are human, if you are on a compounded med long enough it's only a matter of time before the odds stack against you. And it may be a long time because Pharmacies have many measures to prevent such things - but I am glad to be out of that game altogether.

I realized this week that I have been happier than I have in months. So much is resolved. Mostly I am happy because Ellie is REALLY happy now. My little insomniac. Her seizure med free brain did readjust - she has slept through the night all this week....

She is also off the Protonix and is only now on Zantac and Myralax. That is a huge deal after having been on Cisipride, Depakote, Protonix, Zantac, Myralax last year at this time. It's progress. Ellie's smile is the biggest it has ever been. Her eyes are more aligned than they have been since that bad surgery. She has found her voice. She is only slightly tired these days because she did lose weight with all this going on. She is showing more normal signs of appetite, which is motivating her to try food by mouth once again. Though it's been so long she has forgotten how to eat. This is sad, but workable... Her appetite is not source of confusion because it is no longer accompanied by nausea. I had to totally change her diet to be able to compensate for the Protonix so now her diet is more varied and contains more power foods that will support her growth. Did I mention she is also in another growth spurt, one that is as much seen in cognitive gains as it is in physical size?

Wild, let's just do nothing by halves in life because that would be way too boring....

Things are moving in a good direction. The Nap has gone away and Ellie is just plain more present. She wakes up smiling and talking and communicating. She is initiating more signs. She gets bored more easily and is more open to new things. All good problems to have.

In the middle of September I was feeling very bad. There were other stressors too with work especially. All of it culminated into the breath being knocked out of me. I felt like my zest for life was being leached from me by worry, lack of sleep, more worry, and physical pain in my back and arms from holding Ellie at night so much. I thought this is what middle age must be. Now I see that my spirit is resilient. I am also profoundly aware that for better and worse my happiness is linked to Ellie's by an invisible yet unbreakable chord in a note that close to g. Not having felt such a tie like this to my own parents growing up, I am grateful for the experience. It's very grounding though heart rendering when the chips are down. Better to have the heart rendered than no heart at all.

These last three months of hell have been worth it to get us to now. It's weird because I feel excited again, like when I was pregnant with her. Every morning I wake up I can't wait to see her. It's nice to feel this way again. I don't know where hope comes from. It could just be the extra sleep. It probably has to do with the fact that Ellie is making so many gains and is finally out of pain. She is happy. She is all smiles and giggles and full of life and loving and snugly and silly and wanting to learn and thrilled to taste "cheesy noodles" and finding salad a hilarious thing to eat and doing great in the patterning skills that are teeing her up for algebra...

I am grateful for this renewed hope. I was worried I was going down a bitter road that was leading to the death of hope, heart and soul. It's the road that everyone assumes you are already headed down when you have a kid like Ellie. All that Holland stuff is just another way to say cloudy skies for life. Instead I have found a second wind. I feel the same kind of excitement a mother has before her baby is born. That feeling of knowing that there is new love on the way and it's going to change everything for the better. I have that deep understanding again that this love is the only thing that counts and is what makes everything else meaningful. I am there again and it feels good.