Quality verses Quantity?
This is the question that we were asked Monday (August 6th) at Emmalin’s doctor’s appointment with her pulmonologist (at the St. Louis Children’s Hospital). When the doctors came in the room and started going over the results with us about the swallow study that Emmalin had done on May 20th, to say the least, it did not go the way I had hoped!
They said that the results weren’t good. Emmalin was aspirating :( They said that even though she wasn’t aspirating large amounts unless she was very fatigued in her mouth, even when she was not fatigued, she was still aspirating very small amounts. Although you would think that this would not be as big of a deal because it wasn’t normally large amounts, they explained that over time even small amounts (building up over days and years) can still hurt her quality of life down the road. Then the doctors said that we need to ask ourselves the question, which do we feel is more important, quality or quantity? Was it really worth feeding her the small quantities of food that she was eating knowing that it was going to hinder her quality of life in the long run?
Although they didn’t feel that she needed to have a surgery immediately to have a fundoplication done (because she hasn’t ever had any type of aspirating pneumonia), by stopping all food/fluids from going through her mouth would give her the best chance of not aspirating (therefore giving her the best quality of life). They also said that we wanted to touch back base in 6 months and at that time if we felt like she had got a lot stronger in her trunk and head control (because as strange as it sounds the stronger you are in these areas the more it can help you possibly not aspirate) and we felt she was possibly aspirating less, we could do another swallow study at that time. If the swallow study then showed that she was aspirating less, we could reevaluate the situation at that time.
I was having a hard time figuring out a way to explain what the fundoplication thing was all about and so I found this on the internet. I think it helps explain what the fundoplication surgery is:
During fundoplication surgery, the upper curve of the stomach (the fundus) is wrapped around the esophagus and sewn into place so that the lower portion of the esophagus passes through a small tunnel of stomach muscle. This surgery strengthens the valve between the esophagus and stomach (lower esophageal sphincter), which stops acid from backing up into the esophagus as easily. This allows the esophagus to heal.
This procedure can be done through the abdomen or the chest. The chest approach is often used if a person is overweight or has a short esophagus.
This procedure is often done using a laparoscopic surgical technique. Outcomes of the laparoscopic technique are best when the surgery is done by a surgeon with experience using this procedure.
Last year when Emmalin got her feeding tube, although she had some acid reflex, it was not that bad. Emmalin had also not been aspirating in ANY way so there was no reason for her to have to have a fundoplication done when her feeding tube was being placed. In fact even after the feeding tube was placed, we were still able to feed Emmalin through her mouth, at least as much as she would tolerate. And although I knew that her mouth muscles were VERY weak (she was still only tolerating stage 2 baby food consistencies), I made it my priority from that day forward to try to make sure that we were doing everything in our power to help Emmalin get her mouth stronger. I even had a very small hope/dream that maybe even one day Emmalin would gain back so much strength in her mouth that she would be able eat ALL of her meals completely through her mouth and we would be able to get the feeding tube removed. So we made feeding therapy one of our main priorities, hoping to strengthen her muscles more and more as time went on. To show you how seriously we took it, we took Emmalin to 2 different feeding therapists a week up until April of this year when we had to stop because of her brain surgery.
And now, after all of that hard work…here we are, being given the option of “quality or quantity”. I have to say, my worst fear going into the appointment was that the doctor was going to say she had to have the fundoplication surgery, so I guess I should just be grateful that Emmalin doesn’t have to have that surgery!! But the thought of Emmalin NEVER eating through her mouth again, was SO hard for me to hear!! If fact, if I had to describe how I felt (and at this moment still feel) in three words, they would be: defeated, disappointed, and heartbroken!! I HATE CDKL5!!! And even though I still know that I have a TON to be grateful for, it still doesn’t make it easier when Emmalin loses a “typical” skill. In a weird way, when something as drastic as this happens, you mourn it (or at least this is how I seem to handle these situations). I know it sounds crazy, but when you fight SO hard to try to keep something going and then one day you find out, the battle is over, you lost and CDKL5 has won another round… it can be devastating!!
There are 2 other things that I have learned throughout the past year that are another part of the reason it has been SO increadibley hard to accept the fact that I can no longer feed Emmalin. One of the things was that when someone stops eating, there muscles in their mouth get A LOT weaker (Emmalin's are already REALLY weak to begin with)!! The second thing was that for people who are not very strong in the eating area (which is Emmalin); there is a chance that when they are told they have to stop eating, their bodys can forget how to eat. If this happens, I was told that it is not like riding a bike, where the “motions” just come back to you. If Emmalin forgets how to eat, it will be lost forever, and the thought of this makes my heart ache with sadness! Have I mentioned how much I HATE CDKL5!!!!
I was talking with one of my dear friend, named Amy yesterday. Amy’s daughter, Lexi, also has CDKL5. Lexi is a lot older than Emmalin and although the girls are not EXACTLY alike, this is an area that Amy has already been through with Lexi. As I was talking with Amy, she was saying that it was also really hard for her when she was told by doctors that Lexi would never eat food through her mouth again. Amy shared a story with me that really helped me put Emmalin’s “not eating” in perspective and I would like to share it with you.
She said it was a couple of years after Lexi had stopped eating when she was talking to a doctor about the moment she was told Lexi would never eat again and how devastating it was!! The doctor’s response was very interesting! He said, “Was it devastating for you or Lexi?” She said, “What?” And he repeated the question “was it devastating for you or Lexi? Did Lexi even like eating?” Amy thought about it and said, “No, Lexi hated eating.” “So it was devastating for you, not Lexi”, the doctor said. The more Amy thought about it, she realized he was right. Lexi had always hated to eat, and actually looking back at it, eating was probably uncomfortable for her because of her aspiration issues. So the fact that she didn’t have to eat any more through her mouth was probably something that Lexi would have been really happy about.
I feel like I am in that same situation. I too feel like being told that Emmalin cannot eat through her mouth anymore, in some ways has been devastating. My heart aches because she will never have another taste of one of her birthday cakes and she’ll never have a favorite food, favorite candy, or even a favorite drink. But in reality, like Amy, this is all devastating for me NOT Emmalin. Also like Lexi, Emmalin doesn’t like to eat and I know that she is probably pumped about the fact that the doctor has just given her permission to NEVER have to do eat again!!
I’m SO grateful that Amy told me this story because it is a perspective that I probably would have never thought about. And in the “grand scheme of things”, I know that as big of a deal as this seems to me now, it’s really not a huge deal at all. Even though Emmalin can’t eat by mouth now, she still just as happy, healthy, beautiful, and amazing as ever!! I also am SO grateful that GOD is by my side as I accept this defeat and learn to cut my losses and move on to the next battle. It is because of HIM being with me ALWAYS that I know that it is all going to be ok because he already has it figured out!!
God is Good!!
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