I've never truly been through the standard admitting process. The three times I've stayed in a hospital were the births of my two sons (I was in labor or going to be induced we worried about the admitting later) and my youngest who tried to be a rock-star and choked on his on vomit, emergency room complete with ambulance ride. So actually siting at the admitting desk was a bit strange. The hullabaloo of getting the kids taken care of and what to pack and calling out of work had occupied so much of my brain that it wasn't until we were sitting there that the seriousness of what was happening had started to sink in. Rob had spent the last few hours repeating the number 7 I knew it was a bad number and had him stressed out. Yet in my mind we were there for observation a quick overnight and he would be back on his feet. It never crossed my mind that we were at a someday moment.
So, that number 7 was his creatinine count. Now the only real reference I had was from when I was pregnant. My creatinine had creeped up to 2 and it got the doctors worried about pre eclampsia so I knew 7 was a bad number. But what was creatinine? To be honest its still a little hazy for me but basically its a waste product that the kidneys filter out. If that number starts to creep you are heading for kidney failure. I got a sudden shock of seriousness. We had doctor after doctor come in and we explained the pain, why we were there, why it had taken us so long to come in, and yes we know he has polycystic kidneys. It was hard to keep repeating the story because each time it became more and more real. When we were finally set the nurse told Rob to eat up because after midnight, no more food. Now silly me honestly believed that it was for some kidney test my head wouldn't allow me to realize that they were getting him ready for emergency surgery in which a catheter for dialysis would be put in. The other complication added into this was his heart was showing signs of too much potassium, another issue kidney failure patients can have. We all know about how good potassium is for you, but should you have to much you can have a heart attack or stroke. AWESOME! something new to stress about. We "slept" if you can call it that. We were put in the transplant ward as it was the only place that had an opening (I know the irony) and since Rob had a slight cough he was in "quarantine" this meant anyone who came to see us had to robe up with mask glove In my case I got to sleep in a lovely yellow front robe, mask with plastic guard over my eyes and pink gloves. I was a sight! Since they were measuring fluid in and out I had to use a outside bathroom which involved talking all of my lovely garb off and then starting a new when I returned. I also found myself keeping a much closer eye on how Rob was sitting, moving, talking, moaning. anything that could help me understand where his pain was. He had spent the night before being mocked by our 3 year old who pretended to hiccup and then say "ow" just like daddy was. Every time the nurse came in and asked about how his pain was they always looked at me and I would respond "he's better he isn't doing as many of his tells." I became the pain meter because Rob is very "stoic" (one of my favorite nurses terms) when it came to pain. Looking back over the last 12 years I realized he has always just dealt with his pain, and hidden how much there really is.
So after a fitful night, we finally had the doctors come in for am rounds. At a teaching hospital like UW there are at least 4 doctors at any time. We had two attendees a nephrologist and the main doctor who in our case had a cold and wasn't allowed on our floor. We started with one of the attendees who came in to let us know what was going to happen. She caught Rob at a weak moment, and as he answered some of the usual questions he actually started to cry. Those tears got me I had never seen him cry over this problem of his. We still didn't know much but we knew it was serious. When the whole group came in, the nephrologist snuck in first and started explaining a bit of what was going on. Yes his creatinine was at 7 (almost 8) but had stayed steady over the night. He also wasn't showing other signs of failure, his appetite was there, he was still peeing, he wasn't showing water retention especially in his ankles. She looked at us and said "We think you've been at this number for a while" the urgency started to lift. We weren't headed into surgery yet. The scary part was the next number we heard 8%. His kidneys were functioning at 8%. I didn't know how to process that. The nephrologists smiled at us and explained that had we been in normal care we would have been working prior to this point getting his fistula put in and mentally preparing him for transplant and potentially dialysis. There was nothing accusatory in her manner, it was very matter of fact but caring. I liked her instantly. That couldn't be said of the next doctor we met. The lead of the two attendees came in with a swagger that drove me nuts. He spent so much time dictating what we were supposed to do, and where we were at with out really listening to our story. Since we hadn't been to a doctor in so long we obviously didn't know anything. He even went as far to try and tell Rob what a cyst rupturing would feel like. I watched Rob start to close down and not listen I started to get worried. I was grateful to the nephrologist who stepped in and stopped the doctor with one sentence "He has lived with this disease for the last twenty years and he of anyone in this room can explain what a cyst rupture feels like" This shut the doctor up. Of course he just started on another tangent. We were going to be there a second night even though he was steady, they wanted more observation.
The rest of that day and the next were a blur. I remember parts vividly and others mesh together. I spent a lot of time on the phone explaining to everyone what was going on. I think one of the hardest things as a caregiver is being the mouth piece. You are the one everyone turns to trying get information. It was hard for me to process things because I had to keep telling the story over and over, and never got the chance to just sit and deal. Thank god for my parents and nanny who just took care of the boys for those two days. I am also grateful to work for never asking and just letting me be gone, even though there was important things I was supposed to be helping with. I'm grateful for Facetime which helped us actually see our kids for however brief a time. It was hard being away from them, but I also dreaded how I was going to explain it to them especially my very precocious 6 year old. In a strange way time stopped for those two days, it was a bubble we lived in and the world just kept going without us. As things were wrapping up we learned more and more about what our next "someday" moment was going to be. He had his arm mapped for placement of his fistula (I promise I'll explain what this is soon) We continued regular tests of his urine but numbers continued to be steady. The bad ones even dropped a little but as Rob continually reminded me, they would never go to a good place. We met with a dietitian, who didn't know how to handle vegetarians especially with the renal failure diet which needs high proteins but low phosphates and potassium (a challenge to be sure.)
The doctors finally decided that as long as we set up an appointment with both our general practitioner, and a nephrologist there was no reason to keep him there. We LOVED the nephrologists who had seen Rob in the hospital yet she told us to stay at UW. Every someday moment we were headed for could be dealt with better at UW, and she was based out of Harbor View. This is when we learned the Dr. Kim Muczynski was still there and somehow we got an appointment with her.
For our final check out since our head doctor still had a cold and wasn't allowed on our floor we ended up in a conference room. At this time we went over everything they felt we should know. This included cutting as much potassium out of our diet as possible, and building his iron. Now potassium is in EVERYTHING. Some of the things to avoid oranges, tomatoes, potatoes, the list goes on and on. Having had iron deficiency during my pregnancy I instantly had a red flag raise when they wanted him to take iron which is notoriously hard for the body to absorb in pill form, so to help you take something with Vitamin C say . . . Orange Juice. I raised the question and stumped the attendees. This wasn't the first time for this group that what they were telling us to do didn't add up, but it wasn't till we were home that I realized how much. Since they knew we were going to be getting Rob listed, they gave him a bunch of immunizations and boosters and prescriptions for pain then sent us home.
Up Next: Getting used to the "new normal"
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