Friday, March 8
I was uncomfortable, but couldn't figure out what was hurting. It almost felt like I was about to get nauseous. Or I had to go to the bathroom. Neither happened, so I just went on about my day. I did TRX that morning at the gym. There are a couple of moves where you have to twist your body, and I definitely felt uncomfortable when I did that. But it wasn't horrible, stop and moan kind of pain. So, I powered through it. Then I did all that running around taking Harlie to speech therapy and picking up Cooper and all that stuff.
Saturday, March 9
Friday night was a restless night and I was still uncomfortable Saturday morning, which is why I couldn't run with my friends as scheduled. However, I tried to do everything else. And went to a friend's party that afternoon. By this time, I was probably in more pain than I wanted to admit to myself. Looking back, I can see that clearly. I don't have time to go into it now, but there was a mom there who didn't want to get a helmet for her child who has developed a flat head due to sleeping on his back. It touched a nerve with me, especially since I was already in pain, and short on nerves to begin with. The thing that always gets me is the "I don't want" thing. There are PLENTY of things I don't want to do either. Trust me. But, I have to. For the betterment of my daughter. Once you become a parent, it's not about what you want, it's about what's best for them. Especially in a medical sense. Anyway, I tried to keep my mouth shut, but it was really impossible. Then, I overheard another mom complain that her daughter had to get tubes because she couldn't hear when she had an infection! Gasp! Say it isn't so!! See? I was awful. I looked at my friend and said, "I'm hanging on by a thread over here. Hanging by a thread." Another mom there had apparently had a rough week and she said, "What more could go wrong?" Another one of those sayings that I NEVER say - because guess what? A LOT more could go wrong. My friend looked at me and then said, "Don't say that." And then I left. Thank goodness my friend knows me well and was very understanding and supportive.
Then that night, while I was trying to fall to asleep I felt some sharp pains in my abdomen. It came in waves and I thought, Great, I have a tumor and I'm going to need a hysterectomy. Must call OB doc on Monday. Needless to say, I had a terrible night's sleep and struggled with that pain most of the night.
Sunday, March 10
I woke up and somehow went for a three mile run with my friend Niki, since I missed the run on Saturday. She met me near my house and it was a hard three miles. I felt awful. In fact, I had to walk twice! Went home, ate and showered. The pain increased. And then I peed blood. I thought, aha! It's a UTI. It's a weird UTI, but there are antibiotics, so yippee! I rushed to the nearest doc and peed in a cup and got some ABs. Awesome. Good to go. Feeling better about things now.
But, the pain increased. By later on that afternoon, I was in agony. I was pacing the living room, trying to control my breathing. I knew then that I did not have a UTI. The pain was now creeping towards my back on my left side. Then I remembered something from a few weeks ago...
In February, I had to go to the doc because my back was bothering me. He took x-rays and suggested I see an orthopedist. I took my x-rays to my chiropractor. We talked about what might have been wrong and then he asked me if I had any problems with my kidneys. I said no and asked why. He then pointed to a spot on my x-ray and said that looks like a kidney stone to me.
Yep. That really happened. And I totally didn't want to believe him. I've never had one before and I've heard they are a nightmare.
So, as I was pacing my living room, and I could feel all the pain on my left side and back, I knew I had a freaking kidney stone. I called my friend who's a nurse and asked her what the hospital does for you. In other words, can I do what I need to do at home? Tom found some pain meds left over from a surgery of his and I took one of those. That helped and bought me some time. I really thought I'd be okay. Then less than two hours later, the meds wore off and I was in even more agony than before. I knew I would not be able to manage this pain at home. I was immediately nauseous and could not speak. The effort of talking made me want to vomit. It was horrible.
So, my niece Maggie drove me to the ER. Thank goodness they were not busy and got me right back. They started an IV and got me pain meds (Dilaudid) and anti-nausea meds (Zofran). They did a CT scan and confirmed my fears. It was a kidney stone and it was big. Too big for me to pass without medical intervention. It measured 7mm x 4mm x 5mm. I've read that anywhere between 3mm and 5mm need help to be removed. Awesome.
The doc there said I needed to see a urologist on Monday. They gave me a script for Percocet. And we left around midnight. I was feeling much better and thought I'd be fine with my meds. But the second we got in the car, I was awful again. The motion was just too much. I was in agony the whole way to the pharmacy. I took my meds the second we picked them up and she dropped me off at home. I went in the kitchen to get a cup of water and threw up in the sink.
Needless to say, that night was awful. I took all the meds I could, but they were not touching the pain. The pain just continued to increase in intensity. On occasion it would subside for a few minutes and trick me into thinking I was going to be fine. It was awful.
Thank goodness we know a urologist. In a running conversation on FB I asked his wife if he could fit me in on Monday and he responded right back. He told me to call him at 8am. Awesome!
Monday, March 11
I couldn't move by morning. I was more than miserable. I spoke to David at 8am and had an appointment to see him at 8:50. I was so relieved. Tom was starting a job that morning, but I couldn't drive with all the pain meds I had taken, so he had to come and get me. Murphy was home from school, still sick. And Cooper didn't have school that day, so he was home, too. Maggie stayed home with them.
We had the appointment and they took x-rays. David showed me that the kidney stone was all the way at the bottom of the ureter, just before the entrance to the bladder. He said that usually when the stones are this big, they are found much higher in the ureter because it is so painful. He said he didn't know how I made it this long. Considering how weak I was feeling, I really held on to that for the next few days.
He said that he's seen people pass stones this big before, but the chances were slim. So, he somehow worked miracles and got me in for a lithotripsy procedure that afternoon! YAY David!! Seriously!
I told him that the Percocet wasn't cutting it, so he gave me a script for Toradol, Zofran and Dilaudid. Tom brought me home (I was miserable because I had been in the car). Plus, there was this weird thing when I lifted my left leg at all. It sent a searing pain in my abdomen. It was awful. And when I lifted my left leg to get into Tom's truck, it was like the pain hit me and I saw stars. The whole way home I had my head over a throw up bag. It was awful. He dropped me off and then went to get my meds. Then I layed down and tried to nap until it was time to go to my next appointment. My other niece, Jordan was home from VA Tech on spring break, so she came over to drive me to the lithotripsy appointment.
That procedure uses sound waves while you're under anesthesia. They hit you like 3,000 times in an hour. I felt like crap waking up. But, at least I got a good break from feeling pain. At this point, I had to drink tons of water to try to flush out the broken up pieces. They said when I left that it broke up a good bit, so I was hopeful.
Tuesday, March 12
However, things continued to get worse. And even the new meds weren't keeping me comfortable. Actually, I would have taken discomfort. This was pure pain. Serious pain. I woke up at 2:30am in misery and took my pain meds. I laid in misery until well after 4am. Things were crazy in the morning and I had to help with Harlie's hair, and that stuff. I am the one that gets Harlie ready, so it was a new thing for Tom and it made for painful mornings in that sense, too.
Somehow we got everyone off, except for Murphy, who was still sick. I sent him upstairs to hang out in my room and watch TV. Then my friend Sally called and said she was bringing me coffee. She came over and I really was feeling okay, for the most part. I had just taken the dog for a walk. I was uncomfortable, but not in agony, so that was a nice break. But, just a few minutes after Sally arrived, I went downhill fast. I couldn't remember what meds I took and when. I tried to write them down, but I couldn't remember if I actually took the pill or not. So, Sally helped me count the pills to see how many were missing from my list of what I had taken.
And then I pretty much just fell apart. I was in agony and couldn't get comfortable. No matter my position, I had to move from it, constantly searching for a position that didn't hurt so freaking much. She asked me if I had a heating pad and I told her it was in the bathroom in my room upstairs. She opened the door and Murphy was laying on my bed. Clearly, he was surprised to see this stranger in the doorway (he's met her before, but that was months ago). She said, "Hi, I'm Sally and I'm a friend of your mom's." And he said, "Can you help me turn on the TV?" Kids!
Anyway, she got the rice bag, but it didn't help. Not long after, I started vomiting so Sally called David and he called in another script. She went to CVS and picked it up for me, along with some treats for Murphy. At some point, Sally had to take Murphy's temperature. It was truly crazy. Sally was running all around my house trying to do whatever she could to help me.
About that time, my friend Lynda came over to bring me lunch. I took the new meds, but promptly threw it up. Nothing was staying down. Which also meant that no pain meds were going to stay down, which was a nightmare! Sally said it was time to go the ER. This couldn't last any longer. So, she called David and told him what was going on. He called ahead to the ER to give them a heads up and let his partner know to check on me.
Lydna said she would stay with Murphy (Sally and I just left, there was no saying good-bye) and she made him a sandwich and took it upstairs to him. I can only imagine what this morning looked like from his perspective. That poor kid.
It was pouring raining about now. We pull up to the ER and she ran and got me a wheelchair. Since I was vomiting when we were leaving, they were changing out the bowls I was throwing up in. In a rush, Lynda grabbed the first bowl she could find which just happened to be the clear, salad spinner bowl. haha Can't help but laugh at that. So, as she was wheeling me into the ER, I was vomiting into a clear bowl - so everyone could see what was going on. ;-)
Unfortunately, the ER was packed (not that I could see, because my head was down and my eyes were closed). But, they said there were no rooms and as soon as one opened up, I would get it. Tom met us there, and got there just a few minutes after we arrived. David's partner came out into the waiting area to check on me, which I thought was so nice. But, all I could do was raise my hand a bit - I couldn't speak at all. Or breathe. It was awful. And I am not joking - I wanted to die. Actually, I thought for sure I was going to pass out from the pain. Which, would have been awesome.
A nurse brought me out a cold washcloth for me to wipe my face and neck. And after a little while, Sally said that one of the nurses came out and said this couldn't go on any longer. She grabbed my chair and brought me into an office and started my IV and got me some pain meds and zofran. I could then speak - but was still weak, and still in pain, just a little less pain than before. We waited there until a room opened up. Then David got there and we went over our plan.
I was being admitted. They were going to load me up with fluids (since I couldn't keep anything down) and were going to try to keep me comfortable with pain meds and anti-nausea meds. While the lithotripsy broke up the stone, the pieces were still too big to pass. So, we were going to have to do surgery in the morning. He would have to go up through a catheter and use a laser or something to break up the stone pieces into smaller pieces and then remove them. He would put in a stent to keep my ureter open since it was swollen and irritated. He said he could do it at 7:30am or his partner could do it sometime later on in the day. I knew what he was getting at. So, I said, "Does this mean you're going to see me naked?" And he said, "Yes." He said he talked to his wife about it, and she was fine with it (since we all know each other). The whole situation was just really funny, even in pain, I could recognize that. But, another minute like this was too much. So, I said I didn't care. Just do it. The sooner the better.
My friend Niki came up to the ER to visit and then Tom went home to get some stuff. Then my sister came to visit. Then Sally came back to see me again. Tom stayed till he had to leave to relieve our nurse. He was so sweet. He really didn't want to leave me alone. But, we had no one who could stay with Harlie for the night, so he had no choice. My Mom and Dad came after he left and stayed till about 10pm, I think.
The pain was always there. As was the nausea. I dreaded the night.
Wednesday, March 13
It was a long night. The anti-nausea meds didn't work at all. And any movement could spark a vomiting episode. So, I tried to lay as still as I could. I couldn't even check my messages on my phone. Trying to scroll on my phone, or read the words made me even more nauseous. It was crazy. I had a pain pump that I could press every eight minutes. The problem with that was that I was afraid I would get even farther behind my pain if I fell asleep and went a while without pressing it. Plus, I was afraid I would over-take the meds if I pressed it all the time. Ugh. Was the pain causing my nausea or was the pain meds causing it? It was hard to tell what was going on and to find the right balance. My nurses said the pain was causing it and told me to press it whenever I thought about it. Okie dokie.
I will say that my nurses were great. They were on the spot with everything I needed. At 11pm I asked my nurse when I could get the Zofran again and she said, "Not until 2am." UGH! Are you kidding me?! I really thought I would never make it through the night. But, at exactly 2am, she came into the room and gave me the meds. I know because I was awake. As I was the ENTIRE night. I would close my eyes and then when I opened them, three minutes had passed. Three minutes!!! Ugh. Plus, the Dilaudid was really screwing with my mind and not allowing me to sleep peacefully. I would think someone was in the room, when no one was. Or I would see weird images - almost like a dream. Except I was awake. I got up to pee, and threw up in the trash can. It was lovely. I was an absolute mess. I felt just horrible in every way. I thought, this has to be rock bottom.
Oh, I shouldn't have thought that. That definitely came to back to bite me, but more on that in a while...
Anyway, 6am finally arrived and so did Sally. She stayed with me until they took me back into the OR waiting area. Tom couldn't get there until the kids were off to school (although Murphy was still sick). As the last docs and nurses were talking to me before taking me back, I couldn't stand the sound of my voice any longer! I sounded so whiny and weak! It was awful! But talking was so hard and required so much effort! And the effort made me want to vomit. So, I couldn't stop talking like that.
I don't remember going to sleep. But, as you usually feel when waking up from anesthesia, I felt like crap. I can't tell you how many times I thought of Harlie during this whole ordeal and how many times she has had to deal with this kind of thing - but without the understanding that I have. Breaks my heart. Like, when some of the IV meds burn when going in. Or are cold when going in. Or when bright lights come on and you have to get stuck because they need a blood draw that can't come from the IV (that happened before surgery). And waking up from anesthesia - how many times has she done that??? Ugh.
Anyway, he put a stent in, which was uncomfortable. So, while I was better, I was not pain-free. But, the pain and discomfort was manageable and at least there was a major decrease in nausea. He said the surgery went fine. He sent the stone fragments off to be analyzed. So, he took a picture of it so we could see. Here it is...
I had to take a picture with my cell of the photo he gave me. So, it's a little fuzzy. But, as you can see, my left kidney was pretty much blocked close to 100%, so it was completely backed up. And the piece that you see was just one fragment of the whole stone. Crazy.
They discharged me sometime around noon, with some extra meds, too. He added an antibiotic and Piridium for spasms. Tom brought me home and stayed with me the rest of the day. I took a nap. I know I am so sleep deprived because I haven't had a decent night's sleep since Thursday or Friday.
Also, that day, of course, Cooper had a fever at school, so he had to come home, too. Awesome.
Thursday, March 14
Since my pain was much more in control, I got up to help Tom get Harlie ready. It was picture day at her school. But, she was a mess now, too. After we got her dressed, I realized she had a fever, too. Holy cow. When is this going to end?! So, we called her bus driver and told her not to come.
Cooper stayed home, too. He had a rough night last night and was up several times, and was super hot. Poor kid.
Murphy finally went to school today for the first time in a week. Tom is sick now, too. Although in order for him to get some rest, he had to go to work.
I now have a horrible cough. I think it's official - my house is a MESS.
Harlie had a doctor's appointment today to get the word on whether she could wear her BAHA again. Terri took her for me (my niece drove them) and all went well. Harlie is now sporting her BAHA with NO soft headband! Woohoo! That's so exciting!
Some friends came to visit me this morning. Allison and Kathleen came by and brought dinner from another friend of ours and some cake. And they took Rooney for a walk. That was so helpful! I was definitely not up for walking him today, that's for sure. And it is always so rejuvenating to see friends and know how much you're loved when you're going through a hard time.
By early afternoon, Cooper was vomiting. Great. But after more Tylenol and some down time, he was up jumping on the couch by night. He is something. But, since he had a fever today, he will not be going to school tomorrow, either. Same with Harlie.
After that, my Mom came by to come and get me and take me to my appointment to have the stent removed. That was very quick and easy, which was great. It definitely felt weird, but it didn't exactly hurt, either. The nurse said I might still feel uncomfortable for the next 24 hours or so. But, so far it has been completely manageable and it is such a huge improvement from how I felt just a day ago! How could I complain?!
Friday, March 15
I knew I felt horrible the second I opened my eyes. Since Harlie and Cooper were both staying home from school, I slept in and Tom got Murphy up and ready for school. I stayed in bed for hours. My friend Bethany came to walk the dog for me. Oh, I can't begin to tell you how thankful I am for all the help we have received! Tom called and said he was coming home sick. He felt horrible. I finally forced myself to get up at noon. But that was only so we could go to the doctor. I felt pretty positive that we had the flu.
Yes, the flu. I haven't had the flu in ages. In fact, I cannot recall the last time I had it. But, I knew this was no ordinary sickness. Every part of my body ached. I felt like I had been hit by a truck. And I had not even had a moment to catch my breath from the kidney stone!!! What gives???
Tom and I went to the doctor and took Cooper with us. We were a pitiful sight. We tested negative for the flu. But the doctor said that he thought we had it anyway. I'm not totally sure how that works, but whatever. He said he bet Cooper has it, too. So, he gave us a script for Tamiflu and then I called the pediatrician and he called in some Tamiflu for Cooper and Harlie.
I'm thinking that Murphy had the flu last week. He was out for more than a week. I guess they assumed he had the stomach bug or something when I took him to the doctor last weekend since he had vomited. But he definitely did not have the stomach bug. And he's still not back to 100%. He most likely gave it to all of us. Cooper has had a fever off and on since Tuesday. Harlie had a fever on Thursday (and she rarely gets a fever).
Friday night was horrible. Harlie spent most of the night coughing secretions she could not clear herself. So, that meant we were up, taking turns, suctioning her. Oh, how I long for a good night's sleep!!!
Saturday, March 16
I woke up feeling a tad bit better. And Tom was definitely worse. So, I got up and handled the morning stuff and let Tom stay in bed. Brandy came over to help. Since Harlie's sats were so low (when not on oxygen they were in the low 70s) I felt like the oxygen without humidification would just be asking for more trouble. So, we carted down the whole IV pole and trach humidification system and put it next to the couch.
|Don't you love my photography skills?|
|A throw-up bowl is never far away.|
Our friend Michelle brought coffee for Tom and Happy Meals for the boys. And she got Harlie the girl toy from a Happy Meal since she knew she doesn't eat. Can you believe that? That was so, so thoughtful!!! And as if that wasn't enough, she walked the dog for us!
We all settled on the couch and watched The Sound of Music together. I sat next to Harlie and literally suctioned every few minutes. As the day wore on, I felt worse. I started dreading the night again. I felt really, really tired. Like more tired than I have ever felt before. The kind of tired that made me afraid that I was going to make a mistake taking care of Harlie during the night. What if I missed a sign that things were getting worse? What if we slept through something? I just didn't feel confident in myself and my ability to make good decisions for her.
These are the moments that make me sad. She is not in the clear. She is not a healthy child. And her bouncing back from a sickness is no guarantee. What if this is the sickness that takes us down the road we don't want to go down? What if this one is just too much for her heart? She's been on oxygen for all but three weeks of 2013. Is her body getting tired?
So, I tried to find a nurse to help us for the night. Jennifer, who used to be one of Harlie's nurses, was out of town. But, I messaged her and asked her to message her nursing friends to ask them. I offered to pay them directly. But, unfortunately, no one could do it. Tom was feeling pretty sorry for me. So, he said he would take Harlie duty for the night.
Thank goodness it wasn't that bad of a night, all things considered. Even though when we took her upstairs to go to bed, she had to come off the oxygen for a few minutes (like three). And when I checked her upstairs her sats were 67!!! That's just too, too low! What in the world is wrong with her? Well, I guess the flu. Which we've managed to avoid her whole life up until now. Which is kind of amazing, isn't it? Well, I don't know. She gets the flu shot each year.
Anyway, it is now Sunday afternoon. And I have to get off this computer. I am hoping from here on out we'll all be on the up and up. I think it's safe to say that we are due.
But, before I go, I just wanted to send out a heartfelt thank you to everyone who made our life better in the past two weeks... Thank you David, Sally, Lynda, Niki, Bethany, Michelle, Allison, Kathleen, Glen, Dana, Cami, Mike, Maggie, Jordan, Terri, Brandy, my Mom, Dad and sister, Sandy and to everyone who sent us messages, cards, called, etc. Also, thank you to those who contributed to our wonderful gift of two professional house cleanings!! Yes, many of our friends contributed towards house cleanings and our first one is Friday! I can't wait!
I know I've said it before, but with our luck not being the best, we are so very lucky and blessed to have such a wonderful supportive group of friends and community. We truly couldn't live this life without it! Thank you, from the bottom of our hearts!