Samuel is still struggling with his Edema (I was told Edema is not spelled with an A) and urine output. Before we left the hospital one of Samuel’s Dr.’s lowered his Lasix to help keep his body from flushing out more potassium. Mom is concerned that decreasing his Lasix is causing him to gain back some of his fluids. This is still our main prayer concern. Samuel will be going to the hospital today for blood work and an evaluation, so the Dr.’s will have to decide if they want to raise the Lasix back up.
On a fun note Samuel has two front teeth days away from breaking threw his gums. They are white and swollen and you can clearly see the outline of the teeth! We are very excited as Samuel reaches yet another milestone in his life.
Samuel has also been gifted a real live breathing bunny by one of his nurses. She had tried to convince Daddy Samuel needed a puppy but my Daddy said no. Instead our nurse was at the feed store (around Easter time the feed stores sell baby bunnies, ducks, and chicks) and she fell in love with one of the rabbits we now know as Buttons. She is very sweet and likes to sit on Samuel’s feet. Buttons is living with Samuel’s nurse for now and coming for visits.
I want to thank everyone for their encouraging E-mails, cards in the mail, and prayers. We appreciate every overture of love and friendship. We are also keeping the prayer concerns sent our way in our own prayers and thank you for allowing us to participate in your lives as well. God’s word says to bear one another’s burdens and we are blessed to help bear your burdens as you all help to bear ours. May the Lord bless all of you as you go through your day.
Kaitlyn
Monday, March 29, 2010
Saturday, March 27, 2010
33rd Update
A quick update. Samuel arrived home yesterday. My parents decided there was nothing being done in the hospital that we couldn’t do at home, my Mom says we are playing hospital at home. We were originally going to have to do daily blood work, but neither Quest nor JMH would finger stick Samuel (we do not want to have his blood taken through his veins). Instead of driving up to Cardinal Glennon daily his doctors have decided we can just take his blood when he comes in for appointments. He will be heading in for an appointment on Monday and we hope to find his Potassium still doing well and some of his Adema reduced. Samuel has been responding somewhat to his new form of treatment, but we are still dealing with his fluids. We are so glad to have Samuel home!
Kaitlyn
Kaitlyn
Monday, March 22, 2010
Samuel's 32nd Update
I did not return home from the hospital until about nine last night and had to get Elianna to bed, so I was unable to send out an update. I will do my best to try to put all of the medical madness I learned yesterday into laymen’s terms so that the information is hopefully understandable. My mother and I had a long discussion yesterday as we waded through the information.
The specialist came yesterday after running his tests and thinking over Samuel’s situation and has decided on a course of action. The Renal Dr. thinks that there is an imbalance in a hormone secreted from the adrenal glands. Apparently this hormone signals the kidneys to dump potassium and retain fluids. The hormone basically tells the body that there is not enough fluid in Samuel’s blood and will not let the body release any fluid as a form of self preservation, thus creating the decreased urine output. This hormone, called aldosterone, is thus causing the body not to respond to the Lasix.
The next question was why the fluid in Samuel’s blood is low. The Dr. thinks that there is a possibility that Samuel has low albumen. When there is low albumen in the body this can cause the blood vessels to leak fluid into the surrounding tissue causing the adema.
Why is the Albumen low? Possibly because of low protein. The question is, is Samuel dumping protein, or just not getting enough in his diet. Nutrition came in and said that although Samuel has sufficient calories, he is low on potassium in his diet and proteins. This has led them to change his vitamin and begin exploring the different options of how to add protein into his diet without added calories. We are still waiting to see if the urinary tests show whether or not Samuel is spilling protein into his urine or not.
All of this is really going to be trial and error. Samuel started a new diuretic (like the Lasix) last night in the hopes that it will help reduce the fluids. This new drug inhibits aldosterone, so hopefully it will allow the Lasix to do what it is supposed to.
Until we get some of this fluid off of Samuel we will not be able to bring him home. The adema is still our biggest issue, along with the decreased urine output. Everything else affects, or is affected by, this in some form or another. Once we get the adema under control we will start seeing everything else fall into place.
Thank you for your prayers,
Kaitlyn
The specialist came yesterday after running his tests and thinking over Samuel’s situation and has decided on a course of action. The Renal Dr. thinks that there is an imbalance in a hormone secreted from the adrenal glands. Apparently this hormone signals the kidneys to dump potassium and retain fluids. The hormone basically tells the body that there is not enough fluid in Samuel’s blood and will not let the body release any fluid as a form of self preservation, thus creating the decreased urine output. This hormone, called aldosterone, is thus causing the body not to respond to the Lasix.
The next question was why the fluid in Samuel’s blood is low. The Dr. thinks that there is a possibility that Samuel has low albumen. When there is low albumen in the body this can cause the blood vessels to leak fluid into the surrounding tissue causing the adema.
Why is the Albumen low? Possibly because of low protein. The question is, is Samuel dumping protein, or just not getting enough in his diet. Nutrition came in and said that although Samuel has sufficient calories, he is low on potassium in his diet and proteins. This has led them to change his vitamin and begin exploring the different options of how to add protein into his diet without added calories. We are still waiting to see if the urinary tests show whether or not Samuel is spilling protein into his urine or not.
All of this is really going to be trial and error. Samuel started a new diuretic (like the Lasix) last night in the hopes that it will help reduce the fluids. This new drug inhibits aldosterone, so hopefully it will allow the Lasix to do what it is supposed to.
Until we get some of this fluid off of Samuel we will not be able to bring him home. The adema is still our biggest issue, along with the decreased urine output. Everything else affects, or is affected by, this in some form or another. Once we get the adema under control we will start seeing everything else fall into place.
Thank you for your prayers,
Kaitlyn
Saturday, March 20, 2010
Samuel has made progress since my last update and has also had some new developments. His electrolytes and potassium have regulated themselves with the help of his IV. Once this was accomplished they were able to start him on some Lasix yesterday in the hopes of bringing down the Adema. The hope was if we could get his Adema down through the night that he could come home today. Instead Samuel gained weight through the night and put on more fluids. This left the Dr.’s with some questions. Samuel is not putting out as much fluid as he is taking in. A Renal Dr. has been added to Samuel’s case for a consultation and this today he will be getting three doses of Lasix. The Dr.’s do not think that this will take off Samuel’s excess weight, but they are hoping it will maintain his weight and keep him from putting more fluids on his already swollen body. We are reevaluating Samuel’s kidney’s to see if something was overlooked as we try and figure out what is going on in his little body. The Renal Dr. also wants to run some urinary tests tomorrow to find out some more information like is Samuel spilling protein into his urine and so forth.
Samuel has a new trach now. There was some question as to whether or not Samuel’s air leak (all trach patients have this, it allows them to be able to vocalize) has become too large and he needed to move up to the next trach size. This could account for his previously high Bi Carbons. He has moved from a 3.5 to a 4.0 and we are seeing how he does with this. The Dr.’s are still tweaking Samuel’s vent settings since he has gone from having high carbon dioxide to now having low carbon dioxide (not low enough that it is a problem). He is leveling out at a slow, steady rate.
Thank you all for your prayers, after I get back from the hospital tomorrow I will try to get another update out and let you know how he is doing. Right now Samuel’s biggest struggle will be getting that water weight off. The Lord has been very good to us and keeps Samuel’s little body fighting. He is doing fairly well in spite of everything, and holding his own. All of you play a crucial part in Samuel’s life as you pray for him and give our family encouragement through all Samuel’s trials. Thank you for partnering with us in the journey of Samuel’s life.
Through Christ all things are possible.
Kaitlyn
Samuel has a new trach now. There was some question as to whether or not Samuel’s air leak (all trach patients have this, it allows them to be able to vocalize) has become too large and he needed to move up to the next trach size. This could account for his previously high Bi Carbons. He has moved from a 3.5 to a 4.0 and we are seeing how he does with this. The Dr.’s are still tweaking Samuel’s vent settings since he has gone from having high carbon dioxide to now having low carbon dioxide (not low enough that it is a problem). He is leveling out at a slow, steady rate.
Thank you all for your prayers, after I get back from the hospital tomorrow I will try to get another update out and let you know how he is doing. Right now Samuel’s biggest struggle will be getting that water weight off. The Lord has been very good to us and keeps Samuel’s little body fighting. He is doing fairly well in spite of everything, and holding his own. All of you play a crucial part in Samuel’s life as you pray for him and give our family encouragement through all Samuel’s trials. Thank you for partnering with us in the journey of Samuel’s life.
Through Christ all things are possible.
Kaitlyn
Wednesday, March 17, 2010
Samuel's 30th Update
We took Samuel to the Dr. on Monday as planned and had blood work and Ultrasounds taken. The good news is that on the surface Samuel’s kidney’s seem to be working fine (praise God!) and there is no obstruction to Samuel’s bladder. The disturbing news was that the blood work came back with Samuel’s potassium fatally low and that he was being under ventilated causing a rise in his carbon dioxide levels.
The potassium in your body is part of what regulates the heart. The fact that Samuel’s was so low puts him at risk for Cardiac Arrest. In fact, his potassium was low enough that had we given him the Lasix (you may remember that we had filled the prescription and placed it in his medicine drawer) we would have flushed out even more potassium from his body and possibly could have killed him. Our God is amazing, carefully orchestrating every action we make. The Lord saw to it that we did not feel the need to give Samuel the Lasix thus preserving his life. What an amazing Father.
Our family was then given a choice. Our first option was to do nothing. We do not feel that this is an option because of the value of human life. Another option was to try to treat Samuel at home where he could be tended by us and his nurses, people who love and care about him. This would also be much less stressful on Samuel and he would not have to undergo some of the trauma that being in the hospital naturally entails. The final option was to admit Samuel into the hospital.
My mom brought Samuel home from his appointment late Monday evening so that we as a family could discuss our options and prayerfully make the choice that we believed was best for him. The difficulty was how pressed for time we were. We needed to make this decision as soon as possible. As advantageous as staying at home with Samuel sounded there were some downsides. We would not be able to give Samuel potassium directly into his bloodstream. We would have to give it threw his g-tube and wait four days for him to start receiving the amounts of potassium that he needed. Potassium is also a very lethal drug; it’s actually used on Death Row, so just giving Samuel the potassium could send him into Cardiac Arrest. Were we at the hospital they have the equipment to monitor him much more closely in a controlled environment.
Members of our church family gathered together in our home and prayed with us and Samuel as we made our decision which was ultimately to admit Samuel into the hospital. He was admitted to the TCU and began his treatments. His potassium levels dropped down to 2.2 by the time we got there, normal levels are 3.5. Blood tests have been run and sent off, we are still waiting for those results, and the Doctors have been tweaking his vent settings to deal with his under ventilation. No one is sure what the underlying cause of all of this is or why he is having the issues he is. We will just have to see where the tests lead, if anywhere.
We are praising God that the ER nurse was able to get an IV in Samuel. There was some concern that with his Adema, and the fact that he is very hard to stick, we would have to resort to a chest tube which would require a minor surgery. The nurse got the IV in Samuel on her first try. God’s mercies are unending and new every day.
Our nurses have been wonderful through all of this; we thank God for the three women who are his primary care. Our nurses have been discussing taking shifts at the hospital to insure that my mom gets sleep and Samuel is properly cared for (this is something they will not receive pay for). In fact, one of our nurses was up at the hospital last night and stayed with my mom till around 1:30 in the morning. She had told her husband that Samuel was in the hospital and he had said it was going to be okay, she could still visit him. Her response was she was moving into the hospital so he needed to kennel the Dogs. J
We obviously ask for your prayers concerning Samuel, but we would also ask you keep our nurses in your prayers. Samuel is their sole patient, so if he is in the hospital then they are without work and pay. We hope our hospital stay will be short so that they are not without work long or they do not have to search for some other way to pay the bills. Keep little Elianna in your prayers as she has to deal with the confusion of her missing parents again, and the rest of us who are not able to be at the hospital with Samuel as we would like. I will be sure to keep everyone informed.
In the Love of Christ,
Kaitlyn
The potassium in your body is part of what regulates the heart. The fact that Samuel’s was so low puts him at risk for Cardiac Arrest. In fact, his potassium was low enough that had we given him the Lasix (you may remember that we had filled the prescription and placed it in his medicine drawer) we would have flushed out even more potassium from his body and possibly could have killed him. Our God is amazing, carefully orchestrating every action we make. The Lord saw to it that we did not feel the need to give Samuel the Lasix thus preserving his life. What an amazing Father.
Our family was then given a choice. Our first option was to do nothing. We do not feel that this is an option because of the value of human life. Another option was to try to treat Samuel at home where he could be tended by us and his nurses, people who love and care about him. This would also be much less stressful on Samuel and he would not have to undergo some of the trauma that being in the hospital naturally entails. The final option was to admit Samuel into the hospital.
My mom brought Samuel home from his appointment late Monday evening so that we as a family could discuss our options and prayerfully make the choice that we believed was best for him. The difficulty was how pressed for time we were. We needed to make this decision as soon as possible. As advantageous as staying at home with Samuel sounded there were some downsides. We would not be able to give Samuel potassium directly into his bloodstream. We would have to give it threw his g-tube and wait four days for him to start receiving the amounts of potassium that he needed. Potassium is also a very lethal drug; it’s actually used on Death Row, so just giving Samuel the potassium could send him into Cardiac Arrest. Were we at the hospital they have the equipment to monitor him much more closely in a controlled environment.
Members of our church family gathered together in our home and prayed with us and Samuel as we made our decision which was ultimately to admit Samuel into the hospital. He was admitted to the TCU and began his treatments. His potassium levels dropped down to 2.2 by the time we got there, normal levels are 3.5. Blood tests have been run and sent off, we are still waiting for those results, and the Doctors have been tweaking his vent settings to deal with his under ventilation. No one is sure what the underlying cause of all of this is or why he is having the issues he is. We will just have to see where the tests lead, if anywhere.
We are praising God that the ER nurse was able to get an IV in Samuel. There was some concern that with his Adema, and the fact that he is very hard to stick, we would have to resort to a chest tube which would require a minor surgery. The nurse got the IV in Samuel on her first try. God’s mercies are unending and new every day.
Our nurses have been wonderful through all of this; we thank God for the three women who are his primary care. Our nurses have been discussing taking shifts at the hospital to insure that my mom gets sleep and Samuel is properly cared for (this is something they will not receive pay for). In fact, one of our nurses was up at the hospital last night and stayed with my mom till around 1:30 in the morning. She had told her husband that Samuel was in the hospital and he had said it was going to be okay, she could still visit him. Her response was she was moving into the hospital so he needed to kennel the Dogs. J
We obviously ask for your prayers concerning Samuel, but we would also ask you keep our nurses in your prayers. Samuel is their sole patient, so if he is in the hospital then they are without work and pay. We hope our hospital stay will be short so that they are not without work long or they do not have to search for some other way to pay the bills. Keep little Elianna in your prayers as she has to deal with the confusion of her missing parents again, and the rest of us who are not able to be at the hospital with Samuel as we would like. I will be sure to keep everyone informed.
In the Love of Christ,
Kaitlyn
Sunday, March 14, 2010
Prayers for Samuel
This week our family is asking all of you for a very special prayer concern. As you all know my last update spoke about the concern one of Samuel’s Dr. had for his decreased kidney function. We have been monitoring him closely for the last three weeks and have had a slow decrease in urination and a slight increase in fluid retention. Thursday night was the first time Samuel began to have trouble maintaining his oxygen levels. His breathing became shallow and we had to use oxygen to help him a few times. That night his water retention became more noticeable and his lack of urination more apparent. We have now begun weighting diapers to monitor how much he is secreting.
The good news is that Samuel’s lungs are clear and there are no signs of infection. However this leads his Dr.’s to be very concerned for the wellbeing of his Kidneys. Dr. Noyes says that there has to be an underlying cause for all of this, an underlying cause which he thinks may be his kidneys shutting down.
The concern here is several things. One, Samuel has developed Adema which can cause his heart and lungs to work harder. A risk Samuel could run into from the Adema is congestive heart failure, but at this point his lungs sound wonderful, so that is a much lower concern but one we must monitor and keep in mind. The main concern is his Kidneys.
At this point everything is speculation; we won’t have any concrete answers until Monday. Samuel will be heading to the Hospital on Monday (Dr. Noyes could not see him on Friday) and will be seen by Dr. Albers (Samuel’s Pulmonologist) who will be back from Haiti. We have been given Lasix to hold us over the weekend if necessary, but so far Samuel has not had to take it.
We have full trust that the Lord has a plan in all of this and he is orchestrating everything that is happening right now. Samuel is somewhat uncomfortable, but not in pain where he is crying. The Lord has blessed us with a group of Dr. who are dedicated to seeing Samuel to his first birthday and beyond (as Dr. Sugarbaker told my Mom on Friday). Our prayer is that Samuel would continue to not have pain and that he will be a shining light on Monday when he returns to his mission field. Our prayer for his physical well being is that this would be something easily taken care of and that his kidneys are not shutting down. Samuel is not a candidate for Dialysis (nor would we want to put him through that), and he is not able to have a kidney transplant.
We thank you all for joining us in prayer and loving Samuel with us. May God bless all of you as He has blessed us. Kaitlyn
The good news is that Samuel’s lungs are clear and there are no signs of infection. However this leads his Dr.’s to be very concerned for the wellbeing of his Kidneys. Dr. Noyes says that there has to be an underlying cause for all of this, an underlying cause which he thinks may be his kidneys shutting down.
The concern here is several things. One, Samuel has developed Adema which can cause his heart and lungs to work harder. A risk Samuel could run into from the Adema is congestive heart failure, but at this point his lungs sound wonderful, so that is a much lower concern but one we must monitor and keep in mind. The main concern is his Kidneys.
At this point everything is speculation; we won’t have any concrete answers until Monday. Samuel will be heading to the Hospital on Monday (Dr. Noyes could not see him on Friday) and will be seen by Dr. Albers (Samuel’s Pulmonologist) who will be back from Haiti. We have been given Lasix to hold us over the weekend if necessary, but so far Samuel has not had to take it.
We have full trust that the Lord has a plan in all of this and he is orchestrating everything that is happening right now. Samuel is somewhat uncomfortable, but not in pain where he is crying. The Lord has blessed us with a group of Dr. who are dedicated to seeing Samuel to his first birthday and beyond (as Dr. Sugarbaker told my Mom on Friday). Our prayer is that Samuel would continue to not have pain and that he will be a shining light on Monday when he returns to his mission field. Our prayer for his physical well being is that this would be something easily taken care of and that his kidneys are not shutting down. Samuel is not a candidate for Dialysis (nor would we want to put him through that), and he is not able to have a kidney transplant.
We thank you all for joining us in prayer and loving Samuel with us. May God bless all of you as He has blessed us. Kaitlyn
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