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Archive for November, 2010

Usually throughout the day I kind of “rough draft” a blog post in my head. Actually, if I’m being honest? There are far more blog posts stuck in rough draft mode in my head than I have ever actually found the time to write. However, the typical thing that first pops into my head is a title. I don’t know why but after I start to formulate our day that is what rises to the top…oooh and then it is ACTUALLY at the top. Ha.

Today? All I keep thinking is “No.Frickin.Way.” …but I didn’t feel that was an appropriate title. I didn’t feel that it gave the appropriate amount of weight to what today encompassed. Not to mention? It doesn’t envelop the … gosh. I don’t even know that I have a word to express the level of combined excitement/joy/hope/pride/etc that I hold in my heart at this very moment. I just keep thinking “No.Frickin.Way.”

As I started to formulate this post my mind went back to three months and eight days ago. I sat across the desk from Dr. Tish and received the news that our daughter was potato and soy intolerant. I got that news just after I had  to ask for a towel to clean up the vomit from my child’s shirt… just after I had seen a look of compassion, concern, and worry rush over a near stranger’s face at the sight of my child choking and fighting to catch her breath. Three short months ago I packed extra blankets, waterproof pads, and extra changes of clothes. Our days revolved around trying to get her meds in her at just the right moment so that she would keep them down and hopefully tolerate enough of a feed to where we weren’t concerned for the day about her hydration.

What amazes me the most looking back? Is how much I didn’t realize the strain that was present. For us? It was our “normal.” It was all Alyssa had known. I woke to the sound of her gagging daily and just figured it was how things were. We stripped sheets daily and had just factored it into the daily routine. We planned when to feed her, tried to get a quantity that would stay in for car rides, and overall? without even REALLY realizing it? We were in constant “wait” for the next time she’d vomit. . . and we didn’t even realize it. It was just how life was…. until it wasn’t that way any more.

September is a blur. There was a lot of the “worse before better” that came with trying to dial in her diet. The vomiting increased. It was harder to handle because it wasn’t laced with the smell of vanilla. There were calls to Windrose for advice. There were moments of worry. There was a time when we wiped her intake down to just coconut water because she wouldn’t tolerate any thing else. There were moments when Neil and I lost it together after she was in bed. There were days when I wanted to give up. When it felt TOO HARD. When we’d go to the chiropractor… do the NAET (http://www.naet.com/) testing and find out we had to cut out something else for a day… and I’d want to throw in the towel. Instead? We stuck it out. We muscled through. Alyssa once again showed us that if we are willing to put in effort…she’d not only match it but she’d surpass it as well.

September faded into October and October into November. It was a trying few months in many ways. November is for some reason always an emotional struggle for me. I don’t quite know why… but it seems to happen that way. However, over the course of those months something amazing happened…well somethingS amazing. Alyssa is not the same weak little girl who sat nearly lethargic as I got the news that day at Windrose. Alyssa is not the same little girl who had to be slowly and gently fed so as to keep her from vomiting. Alyssa hasn’t woken up gagging…in…well… I don’t even remember the last day. If she spits up now? It is just a tiny amount.

At any rate… as you can tell… all of this stuff has been gradually changing even if rapidly. So … why am I so speechless about today? Why am I without a title for the events of today? Well… it is a day that I didn’t think I would see for a *very* long time. It is a day that I honestly didn’t know if we would ever experience. It is a day that I for certain would have never placed in 2010. It is a day that once again showed me what a determined and strong little girl we get to spend our days with. What happened today?

Well… Alyssa did not receive any food via her g-tube today!! Not.one.bite. She ate 100% of her food calories off of a spoon. What’s more? SHE ENJOYED IT! She lights up when you say “Do you want to eat?!” and she actually stays interested until the bowl is empty! Of course she still got her supplements, medicine, and liquid via her g-tube. However, she consumed 30 fl oz of purred food off of a spoon today. Now… say it with me. “No.Frickin.Way!!!!” 😀 I just cannot even begin to put to words the emotion that it fills me with. Maybe after a couple of days I will be able to, but probably not. I am *so* proud of her. So very VERY proud. Also? I’m so EXCITED for her. I’m simply THRILLED for her that for the first time in her life food is not a source of pain or discomfort. I’m elated for her that she’s gone a long enough time without food causing her pain that she can actually enjoy meal time. Finally? I’m a bit…ok a LOT… excited for Neil and myself. It’s just…well…EXCITING!!! I’m hoping that today is just the first of many to follow!!! ❤

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So, it’s been almost four years since we had to be way more engrossed in the medical community than we’d ever wanted to be… well… as parents 😉 … I wouldn’t mind so much being on the “other side” of things… but I digress. In that time we’ve been quite fortunate in the medical professionals we’ve encountered. Sure, we started off with the real winner of a pediatrician who at first glance at Alyssa’s skin said “Oh, put a little vaseline on it… she’ll live.” However, we wound up with a pediatrician who anyone would be blessed to have and aside from the initial doctor we have been surrounded by the same people who saw our daughter as an infant. Each of them take the time to talk, listen, and come to an agreed upon decision when it comes to Alyssa. I hear horror stories of doctors with a “God complex” and people being bullied into decisions about their children. I’ve always felt like the silver lining of Alyssa having such a rare disorder is that the doctors in our lives work with us to make decisions that are right for her… even if they’d seem wrong for a typical kid.

Then, this morning happened. At about 3:15 am Alyssa woke up and was just acting “off.” In hindsight, she was acting quite the same as she did the last time she had a big seizure. At 3:30 I had Neil come in and grab her. As soon as we unswaddled her it was apparent she had a fever but we didn’t want to dose her with motrin without knowing how high it was. She began to seize but stopped right around the one minute mark. We loaded into the car to go purchase a thermometer. You know…because they freaking grow legs the moment you actually need them. Took her temp in the parking lot… 103.5. OK. We decided to go home, medicate, and see how she did. Then, about a mile from home she started to seize again. We made the decision to turn around and go to the super close hospital… I’ll be nice and let them remain nameless. 😉  Better to be safe than sorry with two seizures that close together. She seized for nearly five minutes and stopped just as we arrived at the ER. We were quickly brought in, everything went speedily, and after a tylenol suppository she seemed much more herself. I was initially quite impressed with the efficiency of the staff. They ran the standard blood/urine/chest x-ray tests. The doctor seemed relaxed, willing to listen, and kind of “let’s just make sure there’s nothing underlying before you’re on your way.” We figured once the results came back they’d send us on our merry way.

Unfortunately… there was a shift change. I had dozed off with Alyssa on the bed while we were waiting for test results to come back. Well, the new doctor came in when I was half asleep and told us he thought she should be admitted by ambulance transfer (because this hospital doesn’t admit kiddos) and he was giving her a round of antibiotics before we left. I responded a bit confused, and then as soon as he walked away… Neil and I started to talk. As I woke up a bit more I realized how confused I was about the “whys” and about the fact that he hadn’t asked a single question…just spouted off what was going to happen. Luckily Neil was alert enough to ask me the “why” questions. I got up to go find the doctor and about 45 minutes later he finally came back to us.

I expected to have a more coherent discussion with the doctor, reevalutate things with him after he knew more about her history, and make a more appropriate game plan based on Alyssa’s history instead of making it based on the textbook. Instead? He had essentially already made up his mind about exactly what was going to happen, he didn’t want to listen, and he fought me every step of the way instead of working with me. The first thing we addressed was the ambulance. We wanted to know why. His only fear? Her having a seizure in transport. Um. OK… I get it. I get the liability. The harsh reality? Our daughter has a seizure disorder. Every time we get in the car we take the risk of her seizing enroute. If anything on this morning we’d be more prepared than typical. We’d have consented to ambulance transfer if he was worried about her breathing, concerned about her contaminating the community, etc. We did wind up convincing him to let us transfer her… although… we wanted to know why she was being admitted. She hadn’t seized again, there was no “obvious” reason for her fever, and she was acting pretty much herself at this point. He was becoming more and more agitated by the fact that we were not simply smiling and nodding. I asked if he would be willing to consult with her neurologist prior to the transfer. After all, we totally understand that it’s a lot to look at her chart when you’ve never opened it before. He agreed…less than willingly. Then? The moment that made his entire head turn red in frustration. Why the antibiotics? He said…and I quote to the nearest and best of my sleep deprived ability… “It’s the standard of care for a child her age with a fever from an undetermined source. It’s like putting on your seat belt when you drive a car.” To which I replied “OK. Part of me gets that. However, Alyssa is not a standard patient. Also, you put on your seat belt because you have to.” …ready for the reply? “Right, think of it just the same. You have to do this.” Um… NO. At that point his head was red, I was fighting back tears of frustration due to exhaustion, and I just wanted the conversation to be over so we could move to the next step. So, I told him we’d consent to antibiotics if he found one that was not grown on a dextrose base… since our child is potato intolerant after all… to which he replied “I don’t have time for that…I’ll try to find a nurse who does.” Um…yeah. You will.

A bit of time passed and he returned saying he spoke to the neurologist who felt she should be transferred but first wanted to give her an additional dose of one of her seizure meds since her levels were down a bit. Fine… we still felt it was overkill…but maybe we were missing something. (In hindsight I think he talked to one of the other neurologists in the practice who are not as familiar with Alyssa, but I won’t know until Tuesday). The nurse came in with the antibiotic and said that the best she could find was that it said not to mix it with other dextrose derived products. We waffled a bit but in the end?  I consented… I still wish I hadn’t. It frustrates me that I was to a point of exhaustion where I just did not have the strength to properly advocate. I’m not going to beat myself up about it, but next time? There will need to be an elevated blood level that indicates bacterial before they get near her with antibiotics. I just feel like he was so concerned with liability that he was over-covering…which I understand…but at the same time? I seriously feel like we were bullied.

After the antibiotics and seizure medicine had made it through the IV we headed to the other hospital. When we got there and the nurse asked why we were there I didn’t even know how to respond. LOL! My favorite part of the visit was when she asked what meds they had given her at the first ER and I listed antibiotics and she said “Why did they give those to her?!” and I replied “..because it’s the standard of care for a patient her age with a fever from an undetermined source.” Her face? Looked EXACTLY how mine felt when the doctor said it to me. HA! I said “THANK YOU! Thank you for making THAT face!” So, they checked her stats, talked things over with us, and called Alyssa’s neurologist. The pediatrician came in and said that the neurologist said as long as we felt comfortable we were safe to go home. YAY!!

So, it was a long day… with a very small amount of sleep… but here’s hoping everything passes quickly and she’s back to her “normal” self soon!

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