The last several days Chase has felt a lot better as he seems to be getting used to his blood pressure medicine. He participated in his therapy session this morning for the first time in a couple of weeks and has had such a great day. :)
We are going to meet with his specialized care doctor and coordinator tomorrow. They act as his "primary care" specialists and are planning a meeting with all of his doctors to take place in the coming weeks. He will also get an EEG (a test that measures and records brain activity) done tomorrow and will be scheduled to see the neurologist later this week.
The test to check for the adrenal tumor came back normal...a HUGE praise to our Almighty God! We are so thankful!
Our Angel
Chase Maddox
Monday, October 24, 2011
Sunday, October 16, 2011
Happy to be Home :)
Chase continued to have blood pressure issues all week last week and he was readmitted to the children's hospital on Friday night. His medication dosage was changed on Friday and it seems to be a good dose for him. His BP is still up and down, but seems to be a bit more stable. He had more blood work done yesterday that came back good. We still do not know what is causing the spikes, but at least he is having fewer episodes. We came home this evening and we are just monitoring his BP every 6-8 hours.
The nephrologist is referring us to the neurologist to see if the dizziness and digging at his eyes is neurological or just related to the blood pressure. Chase did have a tiny lesion on his brain when he was 5 weeks old. It was never explained or followed up on and given his medical history the nephrologist just wanted to rule it out.
Chase is so funny...first, he only let the nurses and doctors do their exams if they turned on Toy Story for him to watch. As soon as they would walk in the room, he would hand them the remote. Then on Saturday, he learned to climb in a rocking chair and rock in it all by himself, so everyone that came in the room after that had to watch him rock in the chair and then turn on Toy Story. :)
The nephrologist is referring us to the neurologist to see if the dizziness and digging at his eyes is neurological or just related to the blood pressure. Chase did have a tiny lesion on his brain when he was 5 weeks old. It was never explained or followed up on and given his medical history the nephrologist just wanted to rule it out.
Chase is so funny...first, he only let the nurses and doctors do their exams if they turned on Toy Story for him to watch. As soon as they would walk in the room, he would hand them the remote. Then on Saturday, he learned to climb in a rocking chair and rock in it all by himself, so everyone that came in the room after that had to watch him rock in the chair and then turn on Toy Story. :)
Thursday, October 13, 2011
A little break...
Monday's procedure has been called off due to Chase's blood pressure continuing to increase. At least now we can focus on getting him more stable and not worry about a bowel prep and limiting his food all weekend. His BP today climbed to 178/118...scary to say the least. He was not able to participate in his therapy this morning because he feels so bad. We believe he is suffering from headaches and blurred vision along with the dizziness when he experiences these spikes. They readjusted his meds today and they are giving him until tomorrow to stabilize or they are readmitting him. Still no word on his blood work, but praying for some news soon.
Wednesday, October 12, 2011
Hoping to figure it all out soon!
The last couple of days have been very hard on Chase. Since we were released, we have been trying to figure out the correct dosage of BP meds for him. The dose prescribed completely zaps him and leaves him lethargic and he sleeps all day and night. A lesser dose seems to have no effect on the BP. Last night and this morning, his blood pressure has been around 154/100 even with the meds.
We talked to his nephrologist last night and decided to keep monitoring him through the day today and make a decision Thursday about what to do. The test for the adrenal tumor has not come back yet, but they are checking on it daily for us.
The colonoscopy scheduled for Monday is now up in the air due to his BP. He had another bloody diaper last night, so we are certainly wanting answers there, but we are afraid to allow him to be put under general without his BP stable. I talked with his collaborative care coordinator at the children's hospital this morning and our plan is to have nephrology, hematology, GI and anesthesia talk before we move forward with the colonoscopy.
All of these decisions seem so difficult, but I know God will guide us and I pray he will guide the doctors as well.
We talked to his nephrologist last night and decided to keep monitoring him through the day today and make a decision Thursday about what to do. The test for the adrenal tumor has not come back yet, but they are checking on it daily for us.
The colonoscopy scheduled for Monday is now up in the air due to his BP. He had another bloody diaper last night, so we are certainly wanting answers there, but we are afraid to allow him to be put under general without his BP stable. I talked with his collaborative care coordinator at the children's hospital this morning and our plan is to have nephrology, hematology, GI and anesthesia talk before we move forward with the colonoscopy.
All of these decisions seem so difficult, but I know God will guide us and I pray he will guide the doctors as well.
Monday, October 10, 2011
So thankful that God is in control...
All week last week Chase had trouble with his blood pressure being high. We had visited the nephrologist the week before and had a plan to monitor his BP morning and evening while we were waiting on some tests to come back. I talked to the nephrologist on Tuesday and found out most of the tests came back ok, but he had blood in his urine and a high urine PH. We were told to continue monitoring his BP and he would make a decision on Monday (today) about the medicine. As the week went on, his BP got higher and higher so I called the doctor and left a message.
On Friday evening he called me back and we had a very long conversation about Chase’s blood pressure, dizziness, the blood in his urine and stool, his salty skin and other ongoing issues. He decided to not wait until Monday for the meds and called a local pharmacy to have a BP medicine compounded for Chase. We left immediately to go get the medicine and stopped to pick up supper. When we got home, we all sat down to eat and Chase wanted out of his high chair. I got up and got him out and he couldn’t stand up. He has trouble standing often so I just picked him up and stood him back up. As he began to walk toward the living room he was holding on to the wall and staggering. He had a very blank stare as he looked back at Ryan, his Nana, and I. We all immediately knew something was wrong. For the next couple of minutes he continued to fall and stare and stagger sideways as we were getting the cuff to take his BP. Without an expression, Nana said “get his medicine” as she pumped the BP cuff again and again. It was 162/100 and his heart was racing.
I called the answering service at the hospital and was quickly connected with his nephrologist. Her instructions were to take him to the nearest hospital and they would send the transport team after him. I explained we could get him there sooner than going through the local hospital and that we had just given him a dose of the medicine. She told me that he could begin having seizures at any time and to be aware of it as we traveled to the children’s hospital. The ride down was scary and Chase continually patted his eyes and rubbed them as if he couldn’t see anything. They were waiting on us when we arrived and decided to admit him for monitoring. His BP was down to 94/70 about 2 hours after we gave him the medicine. His BP fluctuated all weekend, but remained within normal range with the meds and we brought him home yesterday.
They really have no explanation for all of this and do not know if it is connected to PHA (I believe it is). They are testing him for Pheochromocytoma - a rare tumor in the adrenal gland that effects adrenalin and can cause similar spikes in BP. The test takes a while to come back, they said maybe the end of this week or next. We are still monitoring his BP and trying to adjust his medicine as it is making him tired and want to sleep a lot.
I know it isn’t sheer irony that Friday unfolded as it did. It was all God’s perfect plan. It was perfect that when we knew something wasn’t right with little Chase, Nana just happen to be here to take his blood pressure and we had just picked up his medicine and had it in hand to dose him as soon as we did. Anything could have happened, but God was in control.
His next colonoscopy will take place on Monday, the 17th . They are going to do the procedure in the OR because of his medical history, BP, and low weight. We have to begin the clean out process on Thursday giving him equal doses of Miralax on Thursday, Friday and Saturday and then stopping his feedings and increasing the doses on Sunday while putting him on clear liquids. I feel so bad for the little guy and I pray that God will make this procedure as painless as possible as his last one was awful.
Chase continues to amaze me daily as his smiles never end. J
On Friday evening he called me back and we had a very long conversation about Chase’s blood pressure, dizziness, the blood in his urine and stool, his salty skin and other ongoing issues. He decided to not wait until Monday for the meds and called a local pharmacy to have a BP medicine compounded for Chase. We left immediately to go get the medicine and stopped to pick up supper. When we got home, we all sat down to eat and Chase wanted out of his high chair. I got up and got him out and he couldn’t stand up. He has trouble standing often so I just picked him up and stood him back up. As he began to walk toward the living room he was holding on to the wall and staggering. He had a very blank stare as he looked back at Ryan, his Nana, and I. We all immediately knew something was wrong. For the next couple of minutes he continued to fall and stare and stagger sideways as we were getting the cuff to take his BP. Without an expression, Nana said “get his medicine” as she pumped the BP cuff again and again. It was 162/100 and his heart was racing.
I called the answering service at the hospital and was quickly connected with his nephrologist. Her instructions were to take him to the nearest hospital and they would send the transport team after him. I explained we could get him there sooner than going through the local hospital and that we had just given him a dose of the medicine. She told me that he could begin having seizures at any time and to be aware of it as we traveled to the children’s hospital. The ride down was scary and Chase continually patted his eyes and rubbed them as if he couldn’t see anything. They were waiting on us when we arrived and decided to admit him for monitoring. His BP was down to 94/70 about 2 hours after we gave him the medicine. His BP fluctuated all weekend, but remained within normal range with the meds and we brought him home yesterday.
They really have no explanation for all of this and do not know if it is connected to PHA (I believe it is). They are testing him for Pheochromocytoma - a rare tumor in the adrenal gland that effects adrenalin and can cause similar spikes in BP. The test takes a while to come back, they said maybe the end of this week or next. We are still monitoring his BP and trying to adjust his medicine as it is making him tired and want to sleep a lot.
I know it isn’t sheer irony that Friday unfolded as it did. It was all God’s perfect plan. It was perfect that when we knew something wasn’t right with little Chase, Nana just happen to be here to take his blood pressure and we had just picked up his medicine and had it in hand to dose him as soon as we did. Anything could have happened, but God was in control.
His next colonoscopy will take place on Monday, the 17th . They are going to do the procedure in the OR because of his medical history, BP, and low weight. We have to begin the clean out process on Thursday giving him equal doses of Miralax on Thursday, Friday and Saturday and then stopping his feedings and increasing the doses on Sunday while putting him on clear liquids. I feel so bad for the little guy and I pray that God will make this procedure as painless as possible as his last one was awful.
Chase continues to amaze me daily as his smiles never end. J
Enjoying the rooftop terrace playgroud at the children's hospital.
Saturday, October 1, 2011
A little trooper
On Thursday of this week Chase spent all day at the children's hospital clinic. They performed an echo cardiogram, kidney ultrasound, blood work, urine tests and he seen his Nephrologist and GI doctors. It was a long day for him and he was exhausted, but done such a great job! We are so thankful that both his echo and ultrasound came back good!
His nephrologist discussed blood pressure meds again as his BP was 124/78...very high for a child his age. As we were leaving the hospital, he called Ryan's cell and had us to come back in for additional blood work. It will be next week before we get some of those results. Pending the results, they will make a decision with the meds. The problem with them is the side effects. They can cause dehydration in Chase's case because he has trouble staying hydrated. They can also be sedating and since he has just learned to be more active, we really don't want to set him back. We had a long discussion about how the cells in his kidneys are not responding properly to the aldosterone...his explanations got quite complicated, but I feel like we learned a little. He is doing some research on the saltyness of Chase's skin and thinks he may have a PHA mutation that genetics have not yet found nor know how to test for.
The visit with GI went well. We talked about his ongoing bloody stools and inability to eat normally as well as his gagging and swallowing problems. His doctor is concerned the ulcers in his colon may still be bleeding and she has decided to do a more invasive colonoscopy than the one that was performed a few months ago. We talked a lot about the preparation for the procedure as the last time it was a horrific process that caused Chase a lot of pain. She did mention to us the possibility of him having ulcerative colitis or Chron's disease, but I am not going to worry about that as I am giving it all to God.
His nephrologist discussed blood pressure meds again as his BP was 124/78...very high for a child his age. As we were leaving the hospital, he called Ryan's cell and had us to come back in for additional blood work. It will be next week before we get some of those results. Pending the results, they will make a decision with the meds. The problem with them is the side effects. They can cause dehydration in Chase's case because he has trouble staying hydrated. They can also be sedating and since he has just learned to be more active, we really don't want to set him back. We had a long discussion about how the cells in his kidneys are not responding properly to the aldosterone...his explanations got quite complicated, but I feel like we learned a little. He is doing some research on the saltyness of Chase's skin and thinks he may have a PHA mutation that genetics have not yet found nor know how to test for.
The visit with GI went well. We talked about his ongoing bloody stools and inability to eat normally as well as his gagging and swallowing problems. His doctor is concerned the ulcers in his colon may still be bleeding and she has decided to do a more invasive colonoscopy than the one that was performed a few months ago. We talked a lot about the preparation for the procedure as the last time it was a horrific process that caused Chase a lot of pain. She did mention to us the possibility of him having ulcerative colitis or Chron's disease, but I am not going to worry about that as I am giving it all to God.
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