Esther's fever broke sometime during the night. Hallelujah! Still no specific information about what caused the fever. All tests and cultures have been none conclusive. We will probably never know the cause and that is okay with me as long as Esther is better. Thankfully, her creatinine is back down to a great level.
We are packing our bags and waiting for our marching orders. Esther's IV needs to be pulled and some prescriptions need to be filled. Then we are busting out of this joint!!
Thank you for your prayers! We are praising God for such a short hospital stay!
Wednesday, December 30, 2009
Tuesday, December 29, 2009
Tuesday Update
Esther is doing better. She still has a fever, but it is not as high. She is sitting up more and was able to eat a little for dinner. The docs still don't know what is causing the fever, but they are treating her with antibiotics and an antiviral to cover all bases. To add insult to injury, Esther has a mouthful of canker sores, likely the result of being more immunosuppressed after the three big doses of prednisone.
This morning was hard for Esther when they needed to replace her IV and had difficulty getting a new one started. After three sticks and three false starts, they took a break and let her rest before coming back with a portable ultrasound machine. That helped them locate a deeper useable vein and they had success at last! Poor Esther is feeling a bit like a pin cushion. Because of her fistula in her left arm, only her right arm can be used for blood draws and IVs. She has had a lot of both of those since her transplant and her right arm is a little beat up. It doesn't help matters that she has tiny veins. And, of course, everything is harder when one feels awful and has a rip-roaring fever.
Saturday’s labs showed that Esther's creatinine was responding nicely to the prednisone blasts and that it had dropped back down closer to where the docs like to see it. Today her creatinine popped up a bit, but the docs think the elevation could be caused by the fever and slight dehydration from yesterday. Just to be sure, they set up a renal ultrasound for Esther this afternoon. I haven't heard the report yet, but I’m not expecting any bad news.
Because Esther is immunosuppressed, she always gets a single room when she is in the hospital. Yesterday when we arrived, they put her in a room that has two beds and I get to sleep in one of them! It is a real treat! At times like these, I'm especially thankful for small blessings.
This morning was hard for Esther when they needed to replace her IV and had difficulty getting a new one started. After three sticks and three false starts, they took a break and let her rest before coming back with a portable ultrasound machine. That helped them locate a deeper useable vein and they had success at last! Poor Esther is feeling a bit like a pin cushion. Because of her fistula in her left arm, only her right arm can be used for blood draws and IVs. She has had a lot of both of those since her transplant and her right arm is a little beat up. It doesn't help matters that she has tiny veins. And, of course, everything is harder when one feels awful and has a rip-roaring fever.
Saturday’s labs showed that Esther's creatinine was responding nicely to the prednisone blasts and that it had dropped back down closer to where the docs like to see it. Today her creatinine popped up a bit, but the docs think the elevation could be caused by the fever and slight dehydration from yesterday. Just to be sure, they set up a renal ultrasound for Esther this afternoon. I haven't heard the report yet, but I’m not expecting any bad news.
Because Esther is immunosuppressed, she always gets a single room when she is in the hospital. Yesterday when we arrived, they put her in a room that has two beds and I get to sleep in one of them! It is a real treat! At times like these, I'm especially thankful for small blessings.
Monday, December 28, 2009
Back in the Hospital
Esther is in the ER right now waiting to be moved up to the pediatric floor. She is quite sick with a fever. She just had a boatload of prednisone (500 mg for 3 days and 60 mg for the last two days) which has suppressed her immune system even more than usual making her vulnerable to any and every virus. The fact that she is mounting a fever after so much prednisone (which is an anti-inflammatory) is a concern. She is being admitted so the docs can run some tests, monitor her, and treat her.
Between labs, a biopsy, three prednisone infusions, and this fever, Esther has been in the hospital five of the last six days. This looks like it will be a little longer stay than the others. Are we having fun yet??
Between labs, a biopsy, three prednisone infusions, and this fever, Esther has been in the hospital five of the last six days. This looks like it will be a little longer stay than the others. Are we having fun yet??
Thursday, December 24, 2009
Biopsy Results
Biopsy results show that Esther has low grade rejection which is the best (or least worst?) of the bad possible scenarios. Tomorrow morning she'll go back to the emergency department for another 500 mg of methylprednisolone. They'll have to first put in an IV, which can be a challenge with Esther's limited access. The whole process will probably take about 3 hours. Esther and I will miss the Christmas caroling at the nursing home, but we should be able to make it to Hartland for Christmas dinner. Tom will already be there with the other children.
Esther will have a third dose of the methylprednisolone on Saturday. As much of a bummer as this is, we know that things could be much worse and are thankful that the rejection is not severe. This year's Christmas crisis seems easy compared to the Christmas two years ago that I spent in the ICU with a very sick Samuel.
The following blessing was written by a friend who also has a child with kidney disease. It expresses my sentiments exactly.
"Our hope for each of you this Christmas is that you get to experience the JOY that comes from knowing Jesus Christ as your Lord and Savior, the PEACE that comes from trusting Jesus Christ to comfort you when nothing else can, and the HOPE that comes from knowing only He can meet your every need."
Merry Christmas!
Esther will have a third dose of the methylprednisolone on Saturday. As much of a bummer as this is, we know that things could be much worse and are thankful that the rejection is not severe. This year's Christmas crisis seems easy compared to the Christmas two years ago that I spent in the ICU with a very sick Samuel.
The following blessing was written by a friend who also has a child with kidney disease. It expresses my sentiments exactly.
"Our hope for each of you this Christmas is that you get to experience the JOY that comes from knowing Jesus Christ as your Lord and Savior, the PEACE that comes from trusting Jesus Christ to comfort you when nothing else can, and the HOPE that comes from knowing only He can meet your every need."
Merry Christmas!
An Unfortunate Change of Plans
Esther and I are spending Christmas Eve here at the hospital. I brought her in this morning for a kidney biopsy after lab results yesterday showed a significant jump in her creatinine. The docs suspect that she is having some rejection and they need to know the type and the degree in order to treat her effectively. Praise God, the biopsy went without complication and she is resting comfortably in the recovery room.
Specific results from the biopsy won't be available until this evening, but we just got news that her creatinine is even higher this morning. Not good! The original plan was to wait until biopsy result were available before starting treatment. Given the continued rise in creatinine, they have decided to give her a blast of IV prednisone here and now. This is the same medication/procedure that we did the day before Thanksgiving when she had her first rejection episode. I'm not sure why we keep colliding with the holidays, but nevertheless, that's where we are.
Because today is a hospital holiday and staffing here is low, Esther is going to be admitted to the pediatric floor for a few hours so she can be monitored while she has her infusion. The expectation is that she'll be able to go home later this afternoon.
Beyond that, Plan A is to bring Esther back to the hospital tomorrow and the next day as an out-patient for two more blasts of IV prednisone. If tonight's pathology report shows that she has a higher grade of rejection, we will switch to Plan B which would be to admit her to the hospital for a series of treatments with a different medication. This would involve being an in-patient for a couple days. We'll just have to wait until this evening's report to find out which plan we'll be following.
Well, you can imagine Esther's disappointment! For the last 12 years, we have had a tradition of spending Christmas day with dear friends in Hartland, Vermont. Plan A means Esther spends part of Christmas Day in the hospital allowing for the possibility of a modified version of our tradition. Plan B means she spends all of Christmas and beyond in the hospital.
I’ll let you know what happens.
P.S. Merry Christmas!
Specific results from the biopsy won't be available until this evening, but we just got news that her creatinine is even higher this morning. Not good! The original plan was to wait until biopsy result were available before starting treatment. Given the continued rise in creatinine, they have decided to give her a blast of IV prednisone here and now. This is the same medication/procedure that we did the day before Thanksgiving when she had her first rejection episode. I'm not sure why we keep colliding with the holidays, but nevertheless, that's where we are.
Because today is a hospital holiday and staffing here is low, Esther is going to be admitted to the pediatric floor for a few hours so she can be monitored while she has her infusion. The expectation is that she'll be able to go home later this afternoon.
Beyond that, Plan A is to bring Esther back to the hospital tomorrow and the next day as an out-patient for two more blasts of IV prednisone. If tonight's pathology report shows that she has a higher grade of rejection, we will switch to Plan B which would be to admit her to the hospital for a series of treatments with a different medication. This would involve being an in-patient for a couple days. We'll just have to wait until this evening's report to find out which plan we'll be following.
Well, you can imagine Esther's disappointment! For the last 12 years, we have had a tradition of spending Christmas day with dear friends in Hartland, Vermont. Plan A means Esther spends part of Christmas Day in the hospital allowing for the possibility of a modified version of our tradition. Plan B means she spends all of Christmas and beyond in the hospital.
I’ll let you know what happens.
P.S. Merry Christmas!
Wednesday, November 25, 2009
Happy Thanksgiving!
Wow! It has been 10 weeks since Esther's transplant! Life has been a bit hectic with Samuel and Esther both still needing to be at the hospital so much. It has been even more complicated with them each needing to be in a different place at the same time. Up until two weeks ago, Esther was still going to the hospital once a week for clinic visits and three times a week for lab work. She has actually gone a whole week between labs visits two times so far!
Tom has stepped up and is now often the one leaving the house at 6:15 a.m. to take Samuel to dialysis. The wear and tear of doing this 3-day a week routine for 2 1/2 years has taken its toll on me. The new arrangement allows Tom and Samuel to enjoy some time together in dialysis while I am able to focus on Esther and get her to her appointments and frequent lab visits.
Samuel has not been doing well the last few months. The frequent headache/sometimes migraine problem is back. He usually feels awful after dialysis and often sleeps away most of the day. Eating is also sometimes a chore for Samuel. He just feels lousey more often than not. The wear and tear of dialysis for 2 1/2 years has taken its toll on him!
Prayer request for Samuel - He needs a kidney! Please pray that the Lord would provide a kidney is His perfect timing. Things have gotten a bit complicated with Samuel having a high level of antibodies.
Praise report for Samuel - We recently learned that after months of being incompatible with 95% of the population, Samuel's level of antibodies has decreased a bit. No one has given us a specific number, but every step lower increases the possibility of finding a match for him.
Prayer request for Katie - After a textbook transplant in April 2008, Katie has had a very difficult time with her medications. There have been many issues and many attempts at finding the right cocktail of drugs. The latest medication problem started back in May when Katie began to experience terrible bone pain. Please pray for wisdom as the doctor tries to balance keeping Katie's kidney protected from rejection and perserving Katie's quality of life. There are a limited number of options for immunesuppression. The current cocktail is a bit out of the doctor's comfort zone.
Praise report for Katie - The current cocktail seems to be making a difference! Katie has been successfully (and comfortably) getting around without her cane for about a week. There are still medication adjustments to be made, but this is definitely progress!
Prayer request for Esther - It seems that Esther is having a rejection episode. After having lab work done this morning, we unexpectedly had to spend the rest of the day up at the hospital while they blasted her with a large IV dose of prednisone. Please pray that this treatment and the other medication changes that they are making will suppress her immune system sufficiently so that her body will tolerate the transplanted kidney. The docs will continue to monitor her closely and adjust their plans as needed.
Praise report - Esther had lab work done this past Friday and, because of the holiday, was next scheduled to have labs drawn again this coming Saturday. We are leaving town tomorrow and will be traveling back home late on Friday night. I knew that Esther would be exhausted and not want to go to the hospital early on Saturday morning and told the docs so. They kindly rearranged the schedule and, instead of making her come on Saturday for labs, they had Esther come in this morning. That is when they discovered that her creatinine was quite high. Often the success of reversing rejection is dependent on how quickly treatment is started. Praise God that we changed plans and went in today! Waiting another 3 days could have been disastrous!
I'm sorry that I haven't posted for almost two months, but I must confess that I have been a bit overwhelmed with life. I feel like I'm starting to refocus my sights on the Lord and that is making a big difference.
God is in control of all things and we know that we can trust in His purposes. “Shall we indeed accept good from God and not adversity?” (Job 2:10) The Lord is clearly using our kidney adventure to sanctify us and glorify Himself!
Tom has stepped up and is now often the one leaving the house at 6:15 a.m. to take Samuel to dialysis. The wear and tear of doing this 3-day a week routine for 2 1/2 years has taken its toll on me. The new arrangement allows Tom and Samuel to enjoy some time together in dialysis while I am able to focus on Esther and get her to her appointments and frequent lab visits.
Samuel has not been doing well the last few months. The frequent headache/sometimes migraine problem is back. He usually feels awful after dialysis and often sleeps away most of the day. Eating is also sometimes a chore for Samuel. He just feels lousey more often than not. The wear and tear of dialysis for 2 1/2 years has taken its toll on him!
Prayer request for Samuel - He needs a kidney! Please pray that the Lord would provide a kidney is His perfect timing. Things have gotten a bit complicated with Samuel having a high level of antibodies.
Praise report for Samuel - We recently learned that after months of being incompatible with 95% of the population, Samuel's level of antibodies has decreased a bit. No one has given us a specific number, but every step lower increases the possibility of finding a match for him.
Prayer request for Katie - After a textbook transplant in April 2008, Katie has had a very difficult time with her medications. There have been many issues and many attempts at finding the right cocktail of drugs. The latest medication problem started back in May when Katie began to experience terrible bone pain. Please pray for wisdom as the doctor tries to balance keeping Katie's kidney protected from rejection and perserving Katie's quality of life. There are a limited number of options for immunesuppression. The current cocktail is a bit out of the doctor's comfort zone.
Praise report for Katie - The current cocktail seems to be making a difference! Katie has been successfully (and comfortably) getting around without her cane for about a week. There are still medication adjustments to be made, but this is definitely progress!
Prayer request for Esther - It seems that Esther is having a rejection episode. After having lab work done this morning, we unexpectedly had to spend the rest of the day up at the hospital while they blasted her with a large IV dose of prednisone. Please pray that this treatment and the other medication changes that they are making will suppress her immune system sufficiently so that her body will tolerate the transplanted kidney. The docs will continue to monitor her closely and adjust their plans as needed.
Praise report - Esther had lab work done this past Friday and, because of the holiday, was next scheduled to have labs drawn again this coming Saturday. We are leaving town tomorrow and will be traveling back home late on Friday night. I knew that Esther would be exhausted and not want to go to the hospital early on Saturday morning and told the docs so. They kindly rearranged the schedule and, instead of making her come on Saturday for labs, they had Esther come in this morning. That is when they discovered that her creatinine was quite high. Often the success of reversing rejection is dependent on how quickly treatment is started. Praise God that we changed plans and went in today! Waiting another 3 days could have been disastrous!
I'm sorry that I haven't posted for almost two months, but I must confess that I have been a bit overwhelmed with life. I feel like I'm starting to refocus my sights on the Lord and that is making a big difference.
God is in control of all things and we know that we can trust in His purposes. “Shall we indeed accept good from God and not adversity?” (Job 2:10) The Lord is clearly using our kidney adventure to sanctify us and glorify Himself!
Wednesday, September 30, 2009
Happy Birthday, Samuel!
Today was Samuel's 16th birthday! For the third year in a row, Samuel's birthday happened to land on a dialysis day. For the third year in a row, the amazing dialysis staff went above and beyond to put together a birthday celebration for him. One of our beloved nurses, Jane, baked a scrumptious carrot cake and came in on her day off. The room was decorated and someone had arranged for the Wii game system from Baird 5 to be brought down to dialysis so Samuel could have some fun playing it. Jane and several other nurses took turns playing tennis, bowling, and cow racing with Samuel. It was great fun! Many folks stopped in to share birthday wishes and a piece of cake. Dialysis is not a great place to have to be on your birthday, but Samuel couldn't have asked for nicer folks with whom to spend his birthday.
Bill, Betty, Samuel, Jane, Dr. Ann, and Esther...just a few of the folks at today's birthday bash. Thanks everyone for making the day special!
In other news, Katie came down with cold/flu symptoms very suddenly this morning and Lydia has a sore throat. We're washing hands like crazy and praying that no one else gets infected - especially Esther whose immune system just got stomped on! Samuel wasn't feeling well this evening and missed out on his birthday dinner, but hopefully that is something different.
Well, I had intended to fill you in on all that has happened in the last week since Esther came home from the hospital, but I am exhausted and really need to go to bed. I'll try to write again soon.
Samuel's birthday wish was to get a new kidney. We didn't get "the call" today, but lots of people get belated birthday gifts, right? Let's keep praying that that kidney comes soon!
Bill, Betty, Samuel, Jane, Dr. Ann, and Esther...just a few of the folks at today's birthday bash. Thanks everyone for making the day special!In other news, Katie came down with cold/flu symptoms very suddenly this morning and Lydia has a sore throat. We're washing hands like crazy and praying that no one else gets infected - especially Esther whose immune system just got stomped on! Samuel wasn't feeling well this evening and missed out on his birthday dinner, but hopefully that is something different.
Well, I had intended to fill you in on all that has happened in the last week since Esther came home from the hospital, but I am exhausted and really need to go to bed. I'll try to write again soon.
Samuel's birthday wish was to get a new kidney. We didn't get "the call" today, but lots of people get belated birthday gifts, right? Let's keep praying that that kidney comes soon!
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