Unfortunately, my plan to get caught back up has been derailed again. And, not surprisngly by illness again.
Here is the latest:
On Monday, Elizabeth had a strange immune reaction - to an allergen or virus - that caused swelling of the joints and capillaries under the skin. Starting last week, we thought she was having a typical allergic reaction (hives) to the neighbor's cat that we are taking care of, but then on Monday afternoon she developed a very high fever, spots and bruises all over her body, blew up like a balloon, and could not move any of her joints. It was diagnosed as Henoch Shoenlien Purpura. The symptoms spontaneously left, and she now just has some lingering hives. We have to monitor her blood and urine over the next year to make sure it was not an underlying kidney disease that caused it (this seems very unlikely given her lab results so far. Phew.). If skin reactions persist, she will undergo allergy testing to see if it was a certain food that may have triggered this one. It was probably just an abnormal immune response in response to a virus, probably one that has been lying dormant in her body for some time since she does not have any other symptoms.
Then, on Wednesday of this week, Carolyn came down with her fourth confirmed kidney infection, in as many months. She has been complaining about pain for the past week and a half; we had even taken her in twice for more urinalysis, but nothing was showing up. It was likely that the prophylaxis (low dose antibiotics) were keeping the infection somewhat under control, but on Tuesday, it overpowered the antibiotics and reared its nasty head. This infection was even worse than the rest. Her doc wrote "acute kidney failure" in her chart, given the exceedingly high levels of protein her kidney was secreting (as measured by urinanalysis, protein was 2000; her other infections never exceeded 100 and normal is less than 30). As I have mentioned before, these infections are awful and take her down so fast; it is scary! Fortunately, with fluids and antibiotics, she bounces back pretty quickly.
This time, she had to get two shots of ceftrax, a very high dose of antibiotics which is apparently an incredibly painful shot. Tomorrow, she will start on a dose of oral antibiotics that are aggressive enough to kill an elephant, just to make sure that absolutely no new infection can enter her body (kidneys). Given this latest infection, her surgery, to reconstruct the urinary tract, has been rescheduled for early May, rather than mid summer. After that, she will undergo a series of renal evaluations to see if her kidneys sustained any permanent damage from these infections. Let's hope not. According to the imaging tests we did last month, one kidney was enlarged but neither were damaged before this last infection. Fingers crossed that we treated this infection quickly enough so no scarring occurred. OK. We have a plan for her, and surgery should fix the reflux that is making her so prone to these infections. My fingers are crossed that this is the very last kidney infection that we have to deal with.
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Yesterday -- in the middle of these new and unexpected health crises -- was my birthday. Many of you called and emailed to say happy birthday. Sorry if I was not the most excited. It has been a rough few days or few months for us. I am happy to have such a supportive group of family and friends. And, I am looking forward to what this new year brings us.
Thursday, April 18, 2013
Monday, April 1, 2013
Polka Dots & Other Thoughts
I can't seem to get ahead lately. The blog remains stuck without any recent updates, and my laundry piles have grown to mountainous heights. While you wait for the Easter and St patricks Day photos, updates from my mom's visit last month, a glimpse of my new hair cut, and other random events in our household .... here is a photo to tide you over.
Over the past couple of weeks, my mind (and time) have been preoccupied with more illness. Two weeks ago, Carolyn had her third confirmed kidney infection since December. These infections are nasty and take her down fast. It is scary to see how quickly she goes from being healthy to completely unresponsive, whole body trembling with a 104 fever. Fortunately, she bounces back almost as quickly if we are able to get fluids and antibiotics in her as soon as we see the symptoms.
After this infection, it was clear that we need to figure out why these keep occurring. Of course, getting into a pediatric specialist comes with a delay, even if your pediatrician puts a "priority" order in for you. When I first called the urology department, they gave us an appointment that was 7 or 8 weeks out. The more I thought about it, that was not acceptable to me. She would have another infection before we had the appointment. I was not going to wait. So, I called in some favors. Within an hour of calling a surgeon friend of ours (who called the chief of urology on our behalf), a scheduler called and said they could get us in the next day. Sad but true, it really is all about who you know!
Last week, Carolyn had several imaging tests done, followed by appointments with the urologist, radiologist, and pediatrician. We now know what is going on. I will explain more later, but she has bilateral vesicoureteral reflux (i.e., urine flows backwards from her bladder to her kidney, making her prone to kidney infections.) Her age and diagnosis put her in a position where it is very unlikely that she will outgrow it, so she will likely need surgery -- probably this summer -- and she has to be on daily antibiotics indefinitely to prevent more infections.
I just have to keep reminding myself that these infections have not yet caused any permanent kidney scarring (ultrasounds confirmed that last week. Phew!), and the surgery has a very high rate of success. So, in the grand scheme of things, it is not all that bad. We can fix this! But still, it has been weighing heavy on my mind and heart. Being a parent can bring the highest of highs, but also so much worry and stress and sadness when things are not 'perfect' for a little one.
Carolyn knows that she is sick, and she knows that we now have a plan to help her get better, but when we have tried to explain more to her, she tunes us out and says she does not want to talk about it. She has had some pretty sepctacular meltdowns lately, and I attribute that to her trying to process everything in her little head. I know that she has heard the word "surgery" from the doctors we have met with, but I am not sure she even knows what it is. I figure, given her adament refusal to talk about what we have learned from the doctors, there is no need to explain much more to her about the procedure until it is actually scheduled. In the meantime, we are giving her some extra attention and trying to keep her infection free.
Maybe, if I can clear my head enough, I can start tackling those piles of laundry in my house. And, once I finish that task, maybe I will find an evening to download the photos from my camera and bring you more glimpses of the adventures in our household. Stay tuned.
I love those little girls.
Obviously, I must also really like polka dots, too!
Over the past couple of weeks, my mind (and time) have been preoccupied with more illness. Two weeks ago, Carolyn had her third confirmed kidney infection since December. These infections are nasty and take her down fast. It is scary to see how quickly she goes from being healthy to completely unresponsive, whole body trembling with a 104 fever. Fortunately, she bounces back almost as quickly if we are able to get fluids and antibiotics in her as soon as we see the symptoms.
After this infection, it was clear that we need to figure out why these keep occurring. Of course, getting into a pediatric specialist comes with a delay, even if your pediatrician puts a "priority" order in for you. When I first called the urology department, they gave us an appointment that was 7 or 8 weeks out. The more I thought about it, that was not acceptable to me. She would have another infection before we had the appointment. I was not going to wait. So, I called in some favors. Within an hour of calling a surgeon friend of ours (who called the chief of urology on our behalf), a scheduler called and said they could get us in the next day. Sad but true, it really is all about who you know!
Last week, Carolyn had several imaging tests done, followed by appointments with the urologist, radiologist, and pediatrician. We now know what is going on. I will explain more later, but she has bilateral vesicoureteral reflux (i.e., urine flows backwards from her bladder to her kidney, making her prone to kidney infections.) Her age and diagnosis put her in a position where it is very unlikely that she will outgrow it, so she will likely need surgery -- probably this summer -- and she has to be on daily antibiotics indefinitely to prevent more infections.
I just have to keep reminding myself that these infections have not yet caused any permanent kidney scarring (ultrasounds confirmed that last week. Phew!), and the surgery has a very high rate of success. So, in the grand scheme of things, it is not all that bad. We can fix this! But still, it has been weighing heavy on my mind and heart. Being a parent can bring the highest of highs, but also so much worry and stress and sadness when things are not 'perfect' for a little one.
Carolyn knows that she is sick, and she knows that we now have a plan to help her get better, but when we have tried to explain more to her, she tunes us out and says she does not want to talk about it. She has had some pretty sepctacular meltdowns lately, and I attribute that to her trying to process everything in her little head. I know that she has heard the word "surgery" from the doctors we have met with, but I am not sure she even knows what it is. I figure, given her adament refusal to talk about what we have learned from the doctors, there is no need to explain much more to her about the procedure until it is actually scheduled. In the meantime, we are giving her some extra attention and trying to keep her infection free.
Maybe, if I can clear my head enough, I can start tackling those piles of laundry in my house. And, once I finish that task, maybe I will find an evening to download the photos from my camera and bring you more glimpses of the adventures in our household. Stay tuned.
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