When I was pregnant with our second child I had gestational diabetes. We had to make drastic changes to our diet, but nobody gave me a number of where I my blood sugars were supposed to be. The first appointment I had after the diagnosis the doctor looked at my numbers and said "yep you need to be on medication" I'm one who wants to be as natural as possible and since I was already on blood pressure medication I didn't want to add another pill so I asked, "where are my sugars supposed to be?" When she told me a I looked at my sheet, I wasn't that far off. I asked for one more week with diet to see how it went. I really liked my doctor and she gave me that one more week. When we returned to the office it was still determined that I needed the medication. Since I understood where my numbers were supposed to be, and because I could see where the spikes were I understood it wasn't something I could control with diet and I needed the medication. The interesting part of this story is that I had so embraced the diabetic diet that she lowered the dose amount of medication because my numbers were so good she felt I only needed a little help.
This may seem like a random tangent, but here is where it comes in. I dive wholeheartedly into change if I need it for my health or my families health. We were given the paperwork about potassium, but I never asked for how much he was allowed to have in a day and the doctors made it sound like we had to cut all potassium out of his diet or he would have a heart attack. (Nice parting thoughts I know!)
So we head home from the hospital and Rob was feeling a bit crabby like a toddler who just gotten his shots but we both went to work the next day, life goes on. The doctors had done a complete 180 from "he's going to die now" to "oh, while its serious, he still can live life normally as long as he sees a nephrologist (renal specialist) regularly." So it was life as normal the hospital stay very close in my mind but not urgent. I was more worried about what our dinners were going to look like, how to explain to the kids what was going on, and what our future held. For those who don't know Rob is a stage hand/ event production person so its physical work. I was a bit worried about how he would react to working, but I also knew who was working with him and that they would make sure he didn't do anything to strenuous. Things seemed to go well, outside of just having to tell a few people what was going on it was a thing of the past. We had a weekend to think about what the future held, and how we were going to deal with it. I got home from work and was getting ready to make dinner when I got the call.
"Hi honey can you come get me?"
"Are we going home or to the ER?"
"We'll decide when you get here."
My heart stopped. I started to scramble, turned off ovens, grabbing everything for the boy's trying to get Owen to stop playing Wii trying to get Ian into shoes. All the while I'm trying not to freak out or freak them out. He said chest pain. . . where was his potassium . . . was his sister right when she told us we shouldn't leave the hospital. I finally got the boy's into the car and started the 20 minute drive that seemed like an hour. In reality it should have only be less then 10 minutes but at rush hour near the Seattle Center from Capitol Hill. . . yeah. The whole while I'm trying not to cry since I was driving and I didn't want to freak the kids out more than I had to. We had just been gone from them for three days and I hadn't had the chance to explain why.
We finally pull up to EMP where Rob was working and two of his friends were helping him to the car. He was shuffling, and the fear I saw in one of his friends eyes mirrored my own. I had known from the moment he called we were headed back but it wasn't till I saw him that it sunk in that this might be the rest of our lives. I handed him my phone as we pulled out and told him to call my parents, who thank goodness were able to meet us at the ER. They took Rob back for testing, and I sat with the boys till my folks came. Once they showed up I headed back to see what was happening. They strapped him to an EKG machine, and started talking out what our past three days had been. The heart was normal, we were still waiting on labs but it was looking to be no real surprises. I went back to the waiting room and Owen was standing exactly where I had left him. My mom said he wouldn't move and stared at the door I had walked through until I had come back. I hadn't done a good job of hiding my fears obviously. I picked him up into my lap and hugged him tight "daddy is going to be fine, its a false alarm" I just kept repeating that until it started to sink in. I felt him start to relax. He had heard so much of what was happening, but this was the first time he really felt the stress. It was then I knew I couldn't hide what was going on from him. He deserved to know, and understand especially if someday he would be in a similar position (remember 50% chance Rob will pass it on.) I looked at him and tried to lighten the mood. We joked, he lost a tooth which is forever imprinted on both our memories, and my folks took them to eat. I was able to sit with Rob a little longer and we saw his blood work. As the doctor suspected numbers really hadn't changed, everything except the obvious was well within the normal range.
One of the best things that came out of this was the doctor reinforced that we did the right thing by coming in. After all of the bad experiences Rob had been through that caused us to not go to the doctor, we didn't have the luxury anymore to hope for things to turn around. Now anything that felt off meant a trip to a doctor, and as I learned over the next few months the emergency room.
In an interesting side note as I was writing this post I found myself crying remembering that night. My eldest watched me cry and as I explained why he remembered that evening as well. "I just wanted you to come back" was his reply. The realization that this journey isn't mine, isn't Rob's its our families and friends has been brought into such sharp focus. Any chronic diseases reach is so much bigger than anyone can ever imagine.
For the rest of the weekend we took it easy, we cut our potassium to almost nothing and we visited with friends to try and get things back to normal as much as possible. As we started to share our story, Owen was always there listening. If he had questions I would try and answer as best I could in a way a 6 year old would understand. Things were okay, except I was tired, and it was more than just stress. I was hungry (all the time) and we started reviewing how this new diet was working. I finally sat down and looked at the numbers that were sent home with us, what he was allowed. What the difference that little bit of research made, the amount of potassium he was actually allowed was so much more than we had ever thought, it reminded me of the diabetic diet everything in moderation. I once again got frustrated with that doctor with the swagger, he made it seem like we had no choices, and in a way that there was minimal hope unless we made drastic changes. Rob and I looked at each other, we knew we would see his doctor soon and get yet ANOTHER set of labs, and so far everything looked good. We as a couple decided to go back to our normal diet and wait till a doctor who actually understood the disease told us what we should cut back on. That was the best decision we made. Looking back our diet hasn't changed outside of my taking a more active roll in home preservation so I can control salts and give high potassium foods (beans specifically) a extra soak. His potassium and phosphorus are exactly where they should be. It taught me to be more active in questioning things. Its okay to question doctors and make them explain, and it was going to be my job to be that person.
Next up: STARTING TO SHARE OUR STORY
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