Today marks the third anniversary of Samuel's first dialysis treatment. Our kidney adventure officially began on March 21, 2007 when we heard the words "kidney disease" for the first time. Two days later, on March 23rd, Samuel was on dialysis! It happened to be Katie's 20th birthday and we gathered in Samuel's hospital room that evening to celebrate. Since then, we have celebrated quite a few birthdays in the hospital, but today I am thankful that we were all together at home to celebrate Katie's 23rd birthday!
In that first week of dialysis, I put together a notebook in which to collect information and record details of each dialysis run. A few weeks after Samuel started dialysis, both Katie and Esther were diagnosed with the same kidney disease. I labeled my notebook "Smith Family Kidney Adventure." Little did I know how appropriate that would be! These last three years have turned out to be quite an adventure for our family! That notebook has been filled and refilled many times. Between us, we have had ten surgeries and countless medical procedures. Samuel alone has had 410 dialysis treatments and five surgeries. I couldn't begin to count the number of hours we have spent in the hospital.
Through it all, God has been gracious to preserve the lives of our children and faithful to supply our needs. It has been a difficult time, but we know that He is using it for good, both in our lives and the lives of others. We have learned so much and have been blessed to meet and work with some wonderful people.
I haven't posted in a while, but that doesn't mean things have been quiet. There is much to report, but I will have to save it for another evening. Stay tuned...
Tuesday, March 23, 2010
Friday, January 29, 2010
It's Great to be Home!
Well, that was quite a start to the new year! Esther was in the hospital for 29 of the last 37 days. We pretty much missed January altogether. But we are home now and so happy to be here! It is as if Esther has come alive again. She is up and walking around, talking constantly, animated, happy, and in charge, as usual!
I, on the other hand, have collapsed into a pile in the recliner. I'd be up in bed, but it is much warmer downstairs. I had a long nap this afternoon, another one this evening, and I'm more than ready to head to bed for the night. Another day or two of lying low and I'll be back in the game.
It is SO good to be home!
I, on the other hand, have collapsed into a pile in the recliner. I'd be up in bed, but it is much warmer downstairs. I had a long nap this afternoon, another one this evening, and I'm more than ready to head to bed for the night. Another day or two of lying low and I'll be back in the game.
It is SO good to be home!
Thursday, January 28, 2010
We're Heading Home Tomorrow!
Esther has had two days of stable labs and two days of drinking 3+ liters! Today she even had a slight increase in her red blood cell count! Except for the times when she was receiving medications, Esther has been detached from her IV pole all day. Tomorrow morning's labs will give us the first indication of how she is doing without the 3.6 liters that she has been receiving each day for her maintenance IV fluids. Assuming her labs look good, she'll be allowed to go home on Friday, which is a couple days sooner than projected!!
The antibiotic switch that the doctors talked about doing never happened. They thought that things were working well and decided not to mess with it. Esther has received a dose of IV antibiotic every 8 hours for the last 11 days. She'll likely have another dose in the morning before being discharged. The doctors believe that will be enough so she won't have to continue the IV antibiotic at home. She will have to stay on the oral antibiotic for the C. diff.
Even though she won't be continuing the IV antibiotic, Esther will be going home with the PICC line still in place. It will make the outpatient lab draws much easier for the next week or so. The PICC line will also be used next week to give Esther some extra Epogen. We'll be glad to have it if she should get into trouble and need some extra hydration.
Esther and I are both very excited to be going home. I am looking forward to being together again as a family. Because of H1N1 and RSV concerns, the pediatric floor is "closed" and visitors have been severely restricted. I also can't wait to sleep in my own bed. Most of all, I am hugely relieved that Esther is well enough to leave the hospital! She still has some recovering to do, but time, rest, and antibiotics should do the trick.
Thanks to all of you who have left encouraging comments on the blog or sent cards or emails! Thanks to those of you who have prayed us through another crisis! We are tremendously grateful for your love and support. Special thanks to Grandma Peach who sent Esther some comfy shirts and pants which she has been living in during her hospital stay. Thanks also to Joanne and Janina for teaching my Latin classes for me these last two weeks! Blessings to you all!
We're going home!
The antibiotic switch that the doctors talked about doing never happened. They thought that things were working well and decided not to mess with it. Esther has received a dose of IV antibiotic every 8 hours for the last 11 days. She'll likely have another dose in the morning before being discharged. The doctors believe that will be enough so she won't have to continue the IV antibiotic at home. She will have to stay on the oral antibiotic for the C. diff.
Even though she won't be continuing the IV antibiotic, Esther will be going home with the PICC line still in place. It will make the outpatient lab draws much easier for the next week or so. The PICC line will also be used next week to give Esther some extra Epogen. We'll be glad to have it if she should get into trouble and need some extra hydration.
Esther and I are both very excited to be going home. I am looking forward to being together again as a family. Because of H1N1 and RSV concerns, the pediatric floor is "closed" and visitors have been severely restricted. I also can't wait to sleep in my own bed. Most of all, I am hugely relieved that Esther is well enough to leave the hospital! She still has some recovering to do, but time, rest, and antibiotics should do the trick.
Thanks to all of you who have left encouraging comments on the blog or sent cards or emails! Thanks to those of you who have prayed us through another crisis! We are tremendously grateful for your love and support. Special thanks to Grandma Peach who sent Esther some comfy shirts and pants which she has been living in during her hospital stay. Thanks also to Joanne and Janina for teaching my Latin classes for me these last two weeks! Blessings to you all!
We're going home!
Tuesday, January 26, 2010
Tuesday's Report
On Monday, Esther had an ultrasound to check the status of her large intestine. The infection of the bowel wall is clearly resolving. There is only a trace of inflammation left. That was great news!
I was very surprised to be told yesterday that Esther will probably need to be in the hospital for another week. At least it is encouraging to be talking about going home. The doctors have put together a list of some things that need to be accomplished before she can be discharged. The three main things are:
1) Esther's electrolytes must be balanced and be able to stay balanced without help. She has required IV supplementation of calcium, magnesium, and phosphorus multiple times.
2) Esther's red blood cell count must be stable or on the rise. It has been on a steady downward trend due to the intestinal bleeding. Unfortunately, she has lost almost everything that she gained through the transfusions last week. Yesterday she was down to the point where (for most people) a tranfusion would be considered. They have really been pushing her bone marrow (where red blood cells are made) with daily doses of Epogen. Finally today her RBC count went up a bit! We're praying that this will be the beginning of an upward trend.
3) Esther must be able to consistently drink 3 liters each day. This is the only part of the discharge plan that she has any control over and she's done a great job. Both yesterday and today she got 2.5 liters down.
In addition to the IV antibiotic to combat the intestinal infection, she is also being treated with a second oral antibiotic for the C. diff. In the next day or so, they will be switching Esther from the IV antibiotic to an additional oral antibiotic so that we won't have to mess with the IV meds when we are at home.
As expected, Esther tires quickly. Her threshold for anything unpleasant or difficult is extremely low. The smallest things frustrate her and can escalate into tears. Yesterday, after a long and exhausting trip downstairs for the ultrasound, Esther had to battle with the IV pole to get into the bathroom where she then had to take some nasty medicine that burns her canker sores and tastes like rotten bananas. Shortly thereafter, the nurse came in to do a finger prick to check her glucose. It was the last straw for Esther. She had a meltdown right then and there. She absolutely refused to let the nurse poke her. After reaching an impasse, our compassionate nurse found a way around and no poke was required.
Esther's heart rate is still consistently too high. To attempt to address this, she got two one-liter boluses in addition to her maintenance IV fluids on Saturday. Today she got one extra liter.
Overall, Esther is greatly improved. She is feeling better and eating well. She spends more time in the recliner than in the bed during the day. She is walking longer distances. We are hoping that with today's increase of red blood cells, it might not take a whole week before she is well enough to go home. As eager as we are to get out of here though, no one wants to leave too early and have to come right back again, so the docs will be sure that she is really ready before they send her home.
By the way, Esther's kidney is holding up very well under the present circumstances. It is happy with the constant supply of IV fluids that Esther receives. Dr. Guillot always says, "A hydrated kidney is a happy kidney!" Between the maintenance IV fluids, the one-liter bolus, and what Esther drank, the kidney will be very happy processing 7.2 liters from today. The real test comes when her kidney has to work harder because she is eating more and drinking "only" 3 liters a day.
I was very surprised to be told yesterday that Esther will probably need to be in the hospital for another week. At least it is encouraging to be talking about going home. The doctors have put together a list of some things that need to be accomplished before she can be discharged. The three main things are:
1) Esther's electrolytes must be balanced and be able to stay balanced without help. She has required IV supplementation of calcium, magnesium, and phosphorus multiple times.
2) Esther's red blood cell count must be stable or on the rise. It has been on a steady downward trend due to the intestinal bleeding. Unfortunately, she has lost almost everything that she gained through the transfusions last week. Yesterday she was down to the point where (for most people) a tranfusion would be considered. They have really been pushing her bone marrow (where red blood cells are made) with daily doses of Epogen. Finally today her RBC count went up a bit! We're praying that this will be the beginning of an upward trend.
3) Esther must be able to consistently drink 3 liters each day. This is the only part of the discharge plan that she has any control over and she's done a great job. Both yesterday and today she got 2.5 liters down.
In addition to the IV antibiotic to combat the intestinal infection, she is also being treated with a second oral antibiotic for the C. diff. In the next day or so, they will be switching Esther from the IV antibiotic to an additional oral antibiotic so that we won't have to mess with the IV meds when we are at home.
As expected, Esther tires quickly. Her threshold for anything unpleasant or difficult is extremely low. The smallest things frustrate her and can escalate into tears. Yesterday, after a long and exhausting trip downstairs for the ultrasound, Esther had to battle with the IV pole to get into the bathroom where she then had to take some nasty medicine that burns her canker sores and tastes like rotten bananas. Shortly thereafter, the nurse came in to do a finger prick to check her glucose. It was the last straw for Esther. She had a meltdown right then and there. She absolutely refused to let the nurse poke her. After reaching an impasse, our compassionate nurse found a way around and no poke was required.
Esther's heart rate is still consistently too high. To attempt to address this, she got two one-liter boluses in addition to her maintenance IV fluids on Saturday. Today she got one extra liter.
Overall, Esther is greatly improved. She is feeling better and eating well. She spends more time in the recliner than in the bed during the day. She is walking longer distances. We are hoping that with today's increase of red blood cells, it might not take a whole week before she is well enough to go home. As eager as we are to get out of here though, no one wants to leave too early and have to come right back again, so the docs will be sure that she is really ready before they send her home.
By the way, Esther's kidney is holding up very well under the present circumstances. It is happy with the constant supply of IV fluids that Esther receives. Dr. Guillot always says, "A hydrated kidney is a happy kidney!" Between the maintenance IV fluids, the one-liter bolus, and what Esther drank, the kidney will be very happy processing 7.2 liters from today. The real test comes when her kidney has to work harder because she is eating more and drinking "only" 3 liters a day.
Sunday, January 24, 2010
Short and Sweet
This needs to be short because I am so tired that I can barely keep my eyes open.
It is sweet because Grace was a love and made time to bring Click to the hospital to visit Esther today. Poor Esther had a meltdown on Friday - lots of pent-up frustrations and sadness. One of her issues was that she was missing the dogs. With a little negotiating, we were able to get permission for Click to come.
Thank you, Grace! What a nice big sister you are!!
The other sweet news is that after 2 days of some scary intestinal bleeding, Esther is doing better. She is eating and is much more engaged in life.
That's it for me tonight!
It is sweet because Grace was a love and made time to bring Click to the hospital to visit Esther today. Poor Esther had a meltdown on Friday - lots of pent-up frustrations and sadness. One of her issues was that she was missing the dogs. With a little negotiating, we were able to get permission for Click to come.
Thank you, Grace! What a nice big sister you are!!
The other sweet news is that after 2 days of some scary intestinal bleeding, Esther is doing better. She is eating and is much more engaged in life.
That's it for me tonight!
Thursday, January 21, 2010
The Good and the Bad
Yesterday brought both good and bad developments. As expected, Esther's echocardiogram was fine. And best of all, she didn't have a fever all day!
The difficulties yesterday included the progression of the typhlitis. Esther developed some of the clinical signs that come with typhlitis - abdominal pain and bloody diarrhea. It was a confirmation of the diagnosis, but something I had hoped to avoid since Esther has been on antibiotics since Monday. She was able to sit up in a recliner for a few hours in the evening. We watched some television together and chatted. During the night, the pain made it difficult for her to sleep.
Today was harder. Esther just didn't feel well and didn't get out of bed except to use the bathroom. Her canker sores make it so hard for her to take some of the required medications. She was understandably irritable and teary. She wasn't up for even trying to eat until dinnertime.
The typical course of treatment for typhlitis includes giving the gut a rest by not eating for several days. The medical team is hesitant to require that of Esther because she is already behind nutritionally after being sick for the last three weeks. They recognize the importance that nutrition plays in her body being able to heal. She may end up fasting on her own because eating makes the pain worse. They are monitoring the situation and will make adjustments as needed.
Esther's labs were off today and she was given some IV magnesium and phosphorus. Her potassium was too high, so they have changed the composition of her IV fluid. Hopefully, we'll see the results of these changes in tomorrow's labs.
In addition to checking her vitals, a nurse or resident comes every four hours to feel her belly. As long as it remains soft and squishy, she is not in danger. If her belly were to become hard and stiff, it would be a sign that there has been a perforation of her bowel. That would be very bad. Soft and squishy is good.
The difficulties yesterday included the progression of the typhlitis. Esther developed some of the clinical signs that come with typhlitis - abdominal pain and bloody diarrhea. It was a confirmation of the diagnosis, but something I had hoped to avoid since Esther has been on antibiotics since Monday. She was able to sit up in a recliner for a few hours in the evening. We watched some television together and chatted. During the night, the pain made it difficult for her to sleep.
Today was harder. Esther just didn't feel well and didn't get out of bed except to use the bathroom. Her canker sores make it so hard for her to take some of the required medications. She was understandably irritable and teary. She wasn't up for even trying to eat until dinnertime.
The typical course of treatment for typhlitis includes giving the gut a rest by not eating for several days. The medical team is hesitant to require that of Esther because she is already behind nutritionally after being sick for the last three weeks. They recognize the importance that nutrition plays in her body being able to heal. She may end up fasting on her own because eating makes the pain worse. They are monitoring the situation and will make adjustments as needed.
Esther's labs were off today and she was given some IV magnesium and phosphorus. Her potassium was too high, so they have changed the composition of her IV fluid. Hopefully, we'll see the results of these changes in tomorrow's labs.
In addition to checking her vitals, a nurse or resident comes every four hours to feel her belly. As long as it remains soft and squishy, she is not in danger. If her belly were to become hard and stiff, it would be a sign that there has been a perforation of her bowel. That would be very bad. Soft and squishy is good.
Wednesday, January 20, 2010
Wednesday Morning
Wow! Four hours of sleep, a shower, and tapioca pudding for breakfast. It's gonna be a good day!!
And...it's Grace's 19th birthday!
Happy Birthday, sweetie! You are an amazing person and I am very proud of you! I love you!
And...it's Grace's 19th birthday!
Happy Birthday, sweetie! You are an amazing person and I am very proud of you! I love you!
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