Jayson's blood pressure was an issue overnight. The nurses had to continually adjust his medications to control his blood pressure. But other than that, last night went by fairly smoothly. Jayson has been stable most of the day and there are no major concerns that are worrying his doctors and nurses.
It looks like Jayson's kidneys are recovering. The latest labs indicate that his numbers are improving and he's still making excellent urine output. His nephrologist came by to examine him and confirmed his kidneys were looking better. She said she would continue to monitor his progress but she was optimistic he wouldn't need dialysis.
A chest x-ray was done this morning and it showed some fluids on the bottom left portion of his left lung and his respiratory therapist suctioned some of the fluid out. However, she's trying to minimize the times she goes in there to avoid aggravating his lungs. She wants to give his lungs a chance to heal so that they'll be healthier when they attempt extubation (remove breathing tube) on Friday.
The nurses have been changing Jayson's lying position to prevent bed sores. He does have one blister on his left ear. This blister probably started last week when he was on his left side most of the time. He had retained so much fluids at that time and he wasn't stable enough to be moved around. The nurses are examining him regularly for any signs of sores. In the morning when the morning shift first re-positioned him, he opened his eyes for about a minute and had a dazed look. I didn't get any indication that he was recognized me, but I'm grateful that I got to look into my son's eyes once again.
We expect the rest of the night to be uneventful and his nurses will continue their care. As issues arise changes to his care are made. He has been very well taken care of here at NMCSD and many of the nurses and staff who've taken care of Jayson have cared for him while he has been sedated. They are anxious to meet him and I hope they get that opportunity. I hope they get to meet the young man we've been telling stories about and see him smile. I pray that day will come soon.
Tuesday, September 17, 2013
Monday, September 16, 2013
Another Day
Last night there was a possibility that Jayson would have to go through dialysis today because his lab work indicated there was an increase in the nitrogen level. This can mean his kidneys are not functioning well. A nephrologist (kidney doctor) came by and physically examined Jayson. She explained the different factors she looked at before deciding if dialysis should be done. She had to first determine if the increase in the nitrogen was due to improper kidney function or if it was due some other factors. She explained that chemotherapy and blood products can affect the nitrogen level. She said that since his urine output was good, she thought his kidneys were doing their job, maybe not 100%, but they were working. She felt that his kidneys were slowly recovering. Another factor to determine if dialysis should be done was the risks associated with it. For one thing, there are risks in transporting a patient. NMCSD did not have the personnel to do the dialysis here. Jayson would have to be transported to Rady's Children Hospital. Also, there are side effects associated with dialysis. After reviewing all factors, she determined that the risks associated with dialysis was greater than the benefits it would provide. She recommended giving his kidneys a chance to work. Therefore, she recommended not to do dialysis at this time.
I met with Jayson's team of doctors, nurses and staff members around 10 a.m. as they were doing their rounds. They discussed Jayson's treatment for today. The doctors opted to hold off on the MRI. They felt it would be easier to do the MRI when he's awake. Based on his condition and the fact that dialysis was not going to be done, they decided to try to wake him up today.
At about 10:30 a.m., the paralytic medication dose was reduced and we began seeing some movement from him. He was slowly weaned off the sedation medication. After about an hour, he began to cough and he slowly opened his eyes a few times. His nurse, grandma and I talked to him and asked him to squeeze my hand, but he didn't respond. He closed his eyes again. I was just so happy to look into his eyes once more.
We waited patiently for him to open his eyes again and when he did, we gave him simple commands. When he showed some signs of responding the plugs in his nose were removed and his nasals were cleared. Afterwards an attempt to have him breathe on his own began. He was slowly weaned off the breathing machine and he was able to breathe on his own. Next, they removed the breathing tube and began suctioning out fluids. By this time, his entire team of oncologists, nurses and other doctors not involved in the actual procedure were standing outside watching everything unfold along with his dad and grandma. I was at his bedside, holding his hand and saying some prayers throughout the entire time. We urged Jayson to cough. This was to help remove the fluids in his lungs. As he coughed, the respiratory therapist suctioned the fluid and blood that came up. It was easy at first, but then there was a clot obstructing the airway that could not be suctioned out. So, it was quickly decided that they could not complete the task and a new breathing tube was rapidly put in. Jayson was not quite ready.
He is resting now. He is comfortable and stable. I thank God that he is still with us and we have another chance to try again. God is Good. Praise the Lord!
I met with Jayson's team of doctors, nurses and staff members around 10 a.m. as they were doing their rounds. They discussed Jayson's treatment for today. The doctors opted to hold off on the MRI. They felt it would be easier to do the MRI when he's awake. Based on his condition and the fact that dialysis was not going to be done, they decided to try to wake him up today.
At about 10:30 a.m., the paralytic medication dose was reduced and we began seeing some movement from him. He was slowly weaned off the sedation medication. After about an hour, he began to cough and he slowly opened his eyes a few times. His nurse, grandma and I talked to him and asked him to squeeze my hand, but he didn't respond. He closed his eyes again. I was just so happy to look into his eyes once more.
We waited patiently for him to open his eyes again and when he did, we gave him simple commands. When he showed some signs of responding the plugs in his nose were removed and his nasals were cleared. Afterwards an attempt to have him breathe on his own began. He was slowly weaned off the breathing machine and he was able to breathe on his own. Next, they removed the breathing tube and began suctioning out fluids. By this time, his entire team of oncologists, nurses and other doctors not involved in the actual procedure were standing outside watching everything unfold along with his dad and grandma. I was at his bedside, holding his hand and saying some prayers throughout the entire time. We urged Jayson to cough. This was to help remove the fluids in his lungs. As he coughed, the respiratory therapist suctioned the fluid and blood that came up. It was easy at first, but then there was a clot obstructing the airway that could not be suctioned out. So, it was quickly decided that they could not complete the task and a new breathing tube was rapidly put in. Jayson was not quite ready.
He is resting now. He is comfortable and stable. I thank God that he is still with us and we have another chance to try again. God is Good. Praise the Lord!
Sunday, September 15, 2013
Change of Plans
Plans to try to wake Jayson up today had to be changed. His blood pressure has been fluctuating and result of the CT scan done in the morning calls for an MRI to be done. So, plans to unparalyze him, remove breathing tube and wake him up was postponed.
Jayson underwent his 4th CT scan this morning. The results indicate all areas are stable. The lesion that was near his motor strip was less noticeable and the one spot that had grown in size between CT scan # 1 and #2 remains about the same. He is scheduled to get an MRI done on tomorrow morning (September 16th).
His urine output is still good. Jayson is no longer retaining too much fluid. In fact, his doctors were concerned that he may not have enough fluids. So we officially ended our "Pee! Jayson! Pee!" campaign and now we just need him to pee normally. The Puff machine, which removes excess fluids from the body was turned off this morning. This had been on for 4-5 days. They have been giving him more blood products and other fluids to hydrate him and help with his blood pressure. In addition, they have been adjusting his blood pressure medication to control his blood pressure
The paralytic medication dosage has been reduced so he is able to move a bit. We've seen his body shiver, twitch his knee, lift his arm a little, even cough.
His nurses have done a great job taking care of Jayson. They continue to change his position as needed to prevent bed sores. They've been giving him a sponge bath regularly. His respiratory therapists have been removing residual blood build up in his lungs every few hours along with performing oral care. At times they've had to pat firmly on his chest to loosen the build-up. Overall, it was a good day and progress have been made.
Jayson continues to get visits from family and friends over the weekend. Many visitors have commented on how tan Jayson looked. His doctor explained that this is due to some of the medications he's been given that changes skin pigmentation. He's now a tall, dark and handsome young man!
Jayson underwent his 4th CT scan this morning. The results indicate all areas are stable. The lesion that was near his motor strip was less noticeable and the one spot that had grown in size between CT scan # 1 and #2 remains about the same. He is scheduled to get an MRI done on tomorrow morning (September 16th).
His urine output is still good. Jayson is no longer retaining too much fluid. In fact, his doctors were concerned that he may not have enough fluids. So we officially ended our "Pee! Jayson! Pee!" campaign and now we just need him to pee normally. The Puff machine, which removes excess fluids from the body was turned off this morning. This had been on for 4-5 days. They have been giving him more blood products and other fluids to hydrate him and help with his blood pressure. In addition, they have been adjusting his blood pressure medication to control his blood pressure
The paralytic medication dosage has been reduced so he is able to move a bit. We've seen his body shiver, twitch his knee, lift his arm a little, even cough.
His nurses have done a great job taking care of Jayson. They continue to change his position as needed to prevent bed sores. They've been giving him a sponge bath regularly. His respiratory therapists have been removing residual blood build up in his lungs every few hours along with performing oral care. At times they've had to pat firmly on his chest to loosen the build-up. Overall, it was a good day and progress have been made.
Jayson continues to get visits from family and friends over the weekend. Many visitors have commented on how tan Jayson looked. His doctor explained that this is due to some of the medications he's been given that changes skin pigmentation. He's now a tall, dark and handsome young man!
A Beautiful Sound
Jayson's respiratory therapist cleaned Jayson's mouth and throat last night about 11 p.m. Soon after finishing, I heard a beautiful sound...
A Promising Tomorrow
Jayson has been showered with blessings today and we hope for a promising tomorrow.
He had his 3rd CT scan today at 6 p.m. and the results are very promising. The first two areas were still the same size as the 1st CT scan. The third area which had increased in size in the second scan, did not get any bigger. So the nursing team did a great job in stopping the bleeding. His doctor said these three affected areas are not in any critical parts of the brain that control important functions such as motor skills and speech. They did find a new and thin lesion strip in the right side of his brain near the area that controls the motor skills. So, the doctor instructed the nurse to test for any reaction on his left arm. He is scheduled to have another CT scan tomorrow at 11 a.m.
During one of the respiration therapist's examinations, she heard a coarse noise in his lungs. So, she firmly patted around Jayson's chest to loosen any secretion build up. She then inserted a suction in his mouth to remove any liquid and old blood that accumulated. There was no evidence of new bleeding in his mouth.
His doctor reported that his liver looks okay and that this is the first time his kidney is showing signs of improvement. They have reduced the sedation medication a little and we've seen some very slight movement in his foot, knee and right arm.
The doctor is planning to remove the breathing tube and wake up Jayson tomorrow afternoon if his CT scan is okay and all his vitals remain stable. It's very possible that tomorrow will be the day Jayson becomes alert once more and I wonder what his reaction would be and what he would say.
Throughout the past few days I've talked to many of Jayson's doctors, nurses and respiratory therapists who are so happy at Jayson's progress these past 4 days. One of his doctors said that if someone had told her that Jayson would be in this current condition a few days ago, she wouldn't have believe it. A nurse describes his improvement as "simply amazing!" Another nurse said she has seen other patients in the adult ICU with similar conditions who didn't survive.
The comments I've heard show how God's healing touch is working on Jayson through his doctors, nurses, staff, medicine, machine and resources. He's provided Jayson's medical team with the wisdom, knowledge and skills to perform their jobs. Jayson's progress is also a testimony of Jayson's will to live. I have no doubt that God has been with Jayson throughout this time. I am confident He will not abandon His child for He is a loving Father and a merciful God. We look forward to a promising tomorrow.
He had his 3rd CT scan today at 6 p.m. and the results are very promising. The first two areas were still the same size as the 1st CT scan. The third area which had increased in size in the second scan, did not get any bigger. So the nursing team did a great job in stopping the bleeding. His doctor said these three affected areas are not in any critical parts of the brain that control important functions such as motor skills and speech. They did find a new and thin lesion strip in the right side of his brain near the area that controls the motor skills. So, the doctor instructed the nurse to test for any reaction on his left arm. He is scheduled to have another CT scan tomorrow at 11 a.m.
During one of the respiration therapist's examinations, she heard a coarse noise in his lungs. So, she firmly patted around Jayson's chest to loosen any secretion build up. She then inserted a suction in his mouth to remove any liquid and old blood that accumulated. There was no evidence of new bleeding in his mouth.
His doctor reported that his liver looks okay and that this is the first time his kidney is showing signs of improvement. They have reduced the sedation medication a little and we've seen some very slight movement in his foot, knee and right arm.
The doctor is planning to remove the breathing tube and wake up Jayson tomorrow afternoon if his CT scan is okay and all his vitals remain stable. It's very possible that tomorrow will be the day Jayson becomes alert once more and I wonder what his reaction would be and what he would say.
Throughout the past few days I've talked to many of Jayson's doctors, nurses and respiratory therapists who are so happy at Jayson's progress these past 4 days. One of his doctors said that if someone had told her that Jayson would be in this current condition a few days ago, she wouldn't have believe it. A nurse describes his improvement as "simply amazing!" Another nurse said she has seen other patients in the adult ICU with similar conditions who didn't survive.
The comments I've heard show how God's healing touch is working on Jayson through his doctors, nurses, staff, medicine, machine and resources. He's provided Jayson's medical team with the wisdom, knowledge and skills to perform their jobs. Jayson's progress is also a testimony of Jayson's will to live. I have no doubt that God has been with Jayson throughout this time. I am confident He will not abandon His child for He is a loving Father and a merciful God. We look forward to a promising tomorrow.
Saturday, September 14, 2013
Sorry...
We turned on Jayson's laptop a few minutes ago to look at pictures on his computer not knowing that this simple action would announce that Jayson was on-line. I'm sorry for getting everyone excited thinking Jayson is back and on his laptop. I wish this was the case.
Psalm 4:8
Today's daily verse from the bible:
Psalm 4:8
In peace I will lie down and sleep. For you alone, O Lord, make me dwell in safety.
This is exactly what Jayson is doing now. It's for his safety that he is sedated. We thank God for another morning with Jayson. These past few days has shown us how strong Jayson is and how hard he is fighting to stay alive. He is an inspiration to all who know and love him, to both the young ones and young once. I personally think that God is allowing all this to happen to Jayson because he has great plans for him in the future. He is a living testimony of God's grace, love and power.
Last night, Jayson was running a fever which peaked at about 103 and was also shivering. The nurses were able to get his temperature back to normal again and is now stable. He is tolerating all the positional changes they've had to do. The nurses were able to bathe him and the respiratory therapist was able to do some oral care.
Jayson had another CT scan this morning just after 7. He was safely and smoothly taken to and from the CT scan area. Results of this CT scan indicated that two of the three spots of concern remained the same size, however, the 3rd one on the left back side of his brain has increased in size. There is possible bleeding and his doctor has taken the appropriate actions to minimize the bleeding. The cause of the bleeding is still uncertain. An MRI was recommended, but his doctor didn't believe Jayson is stable enough to undergo a 3-hr MRI procedure. So, they will do another CT scan at 6 p.m. tonight to see the progression of this area of concern.
At about 2:30 p.m., his blood pressure was getting elevated, so the nurses increased the sedation medication to help it go down. Higher blood pressure can cause the bleeding in his brain to get worse or break a clot that has already formed. They are closely monitoring his blood pressure and adjusting his medication as needed.
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