This morning the decision was made to take Samuel back into surgery. We have been waiting all day to be squeezed into the OR schedule. Samuel has been NPO for over 20 hours.
We just got word that they will be bringing Samuel down to pre-op at about 6:45 p.m. The transplant surgeons will re-open his midline incision that is just healing from his December 7th nephrectomy. They will perform an exploratory laparotomy (abdominal surgery) with the expectation that they will wash out the infected area and investigate other pockets of fluid near his spleen and transplanted kidney. They are also planning to do a biopsy of the kidney. I was told to expect it to be several hours before we can connect up with Samuel again in the ICU.
We covet your prayers.
Thursday, January 31, 2008
Wednesday, January 30, 2008
Two Steps Forward....Three Steps Back
A lot has happened since I last wrote on Monday night! My dear German friend, Elisabeth, once wrote that she thinks the kidney blog is “better than any thriller”…. you just never know what is going to happen next. I am really feeling that way myself tonight as I write this. I can only shake my head and say, “Okay, Lord.”
As scheduled, on Tuesday morning we took two giant steps forward by leaving the hospital and going to rehab. Our three steps back came this evening as Samuel was transported back to the hospital and was re-admitted to the pediatric floor. We are back in our old room - Baird 587. Here are the details.....
Samuel had quite a send-off on Tuesday morning as he left Baird 5. Nurses, residents, and doctors lined the hallway and sang “For He’s a Jolly Good Fellow” as Samuel was wheeled out through a shower of bubbles. They clapped and cheered for him. It was very touching! I would have positioned myself to get a shot of Samuel’s face had I known what they were planning. I’m told he was grinning from ear to ear.
These are just some of the dear folks who celebrated as Samuel left Baird 5.
This is not such a great photo. Samuel is up ahead in a wheelchair. If you look closely, you can see the bubbles and a blue bubble machine on the left. Abby’s mom (remember Abby?) donated the bubble machine to Baird 5 a couple years ago after Abby spent four months in the hospital. Leslie thought that there should be a big celebration when a child is discharged from the hospital. She’ll be very happy to know that Samuel made his departure through a shower of bubbles. I must say, it did feel like a celebration!
As scheduled, on Tuesday morning we took two giant steps forward by leaving the hospital and going to rehab. Our three steps back came this evening as Samuel was transported back to the hospital and was re-admitted to the pediatric floor. We are back in our old room - Baird 587. Here are the details.....
Samuel had quite a send-off on Tuesday morning as he left Baird 5. Nurses, residents, and doctors lined the hallway and sang “For He’s a Jolly Good Fellow” as Samuel was wheeled out through a shower of bubbles. They clapped and cheered for him. It was very touching! I would have positioned myself to get a shot of Samuel’s face had I known what they were planning. I’m told he was grinning from ear to ear.
These are just some of the dear folks who celebrated as Samuel left Baird 5.This is not such a great photo. Samuel is up ahead in a wheelchair. If you look closely, you can see the bubbles and a blue bubble machine on the left. Abby’s mom (remember Abby?) donated the bubble machine to Baird 5 a couple years ago after Abby spent four months in the hospital. Leslie thought that there should be a big celebration when a child is discharged from the hospital. She’ll be very happy to know that Samuel made his departure through a shower of bubbles. I must say, it did feel like a celebration!Here is Samuel arriving at the Fanny Allen Rehab on Tuesday at 11 a.m. It is the first time in many weeks that he has had shoes on his feet.
The rest of Tuesday was terribly boring. We had expected to jump right into some physical therapy, but they hadn’t scheduled anything for Samuel. We spent the day just hanging out while all the paperwork and administrative details were worked out. Our room was nice, but it all felt a bit too much like a nursing home. Samuel and I both missed the bustle and energy of the pediatric floor. The nurses were very nice, but there were some medication snafus and other issues with the transition that caused me some stress. I also felt a bit unsettled not having Dr. Guillot directly involved in Samuel’s care. Shortly before midnight, Samuel complained of tightness in his chest and his blood pressure was doing some funky ups and downs.
By Wednesday morning (today), Samuel was in tears with big time chest pain. The doctor in charge ordered an EKG, but nothing unusual was detected. They drew some blood to check his labs. Everything looked fine except his white blood cell count – it was high and almost double what it had been the day before. They rechecked his WBC count again a few hours later and found that it was a little higher still. The next move was to order a CT scan of his abdomen to look for any signs of an infection. Before they could do the CT scan, Samuel had to ingest (via his feeding tube) a liter of the contrast that would enable them to get a better picture. That took a few hours, so at 7:30 p.m. they did the scan. An hour or so later, I got a call from Dr. Guillot who, thankfully, is once again running the show. It seems that, for a third time, a pocket of fluid has re-accumulated in Samuel’s right renal fossa (I think I don’t like that word anymore!). Dr. Guillot wanted Samuel back on Baird 5, so she made the necessary arrangements and he was promptly transported via ambulance back to the hospital where he arrived shortly before 11 p.m.
So….36 hours after leaving Fletcher Allen, we are back! In a warped sort of way, it feels a bit like coming home....familiar surroundings and people who know you and care about you. Samuel is currently NPO (nil per os, a Latin phrase meaning “nothing by mouth”). The doctors are leaving their options open for tomorrow in case they decide to do some type of surgical procedure.
Prayer requests
- That the surgeons would come up with a plan that would take care of this infection once and for all.
- That they would figure out what is causing Samuel’s chest pain. It could be referred pain.
- That Samuel would physically and emotionally overcome this setback. You can imagine his discouragement! He feels like he is back at square one.
- That I would know what to do or say to encourage him.
Praise reports
- That the infection was discovered before a fever or sepsis set in.
- That Grandma Peach and Grandpa Ed “happened” to visit today and were there to give hugs and help with the move back to the hospital.
- That Joanne came by for a visit this evening (before we knew about the infection) and just "happened" to bring me donuts. Praying and eating donuts has seen me through many a crisis! Needless to say, I have gained a few pounds during Samuel's hospital stay. Maybe this isn't a praise report afterall!
Stay tuned....we'll see what tomorrow brings.
Monday, January 28, 2008
Field Trip Day
After a good day with no complications, Samuel is scheduled to be transferred to the rehab hospital tomorrow morning. Thank you, Lord!! One giant step toward home!
To make the most of our last full day here, we made time to take some "field trips". I have been curious to see some of the departments within the hospital that have contributed to Samuel's care over the last 53 days. Unfortunately, Samuel hasn't been well enough to do much touring before now. Joanne and Kevin arrived just in time to accompany us. We got Samuel comfy in a wheelchair and headed out.
We first visited the mailroom where each piece of Samuel's mail is checked against the patient census to verify his current room number, then sorted by floor, and finally delivered to his room. The mailroom team of 2 (plus 1 part-timer) handles 15,000 - 20,000 pieces of mail each day!
Next, we went to the volunteer office where any emails that have been sent to Samuel have been printed out and then delivered by a volunteer. The volunteer office manages over 600 people who generously donate their time to do many, many jobs throughout the hospital.
Our next stop was the laboratory. Samuel was not at all interested in visiting the lab, but he graciously humored me. The laboratory is a huge, open room that bustles with people and whirring equipment 24 hours a day. We saw some incredible automated machines that are able to work more quickly and efficiently than the humans who used to do the same tasks manually. We had a little tour of the area where blood cultures are incubated and grown. The technologist kindly opened the large incubator for us....very smelly!! We saw several of the machines that are used to process and test Samuel's blood every morning. These blood tests provide the critical information that enables the doctors to monitor Samuel's kidney function and immune suppression.
Before I could get all my questions answered ....will that ever happen??.... Samuel ran out of gas and we headed back up to his room. Later in the evening, he took a long nap. Medically, Samuel is finally stable. Physically, he is very weak and deconditioned. The expectation is that his time in rehab will give him a jump start on rebuilding his strength and stamina. Despite his reserve, Samuel is excited about the next phase of his kidney adventure. He is hoping to be strong enough to play some pond hockey before the ice melts.
To make the most of our last full day here, we made time to take some "field trips". I have been curious to see some of the departments within the hospital that have contributed to Samuel's care over the last 53 days. Unfortunately, Samuel hasn't been well enough to do much touring before now. Joanne and Kevin arrived just in time to accompany us. We got Samuel comfy in a wheelchair and headed out.
We first visited the mailroom where each piece of Samuel's mail is checked against the patient census to verify his current room number, then sorted by floor, and finally delivered to his room. The mailroom team of 2 (plus 1 part-timer) handles 15,000 - 20,000 pieces of mail each day!
Next, we went to the volunteer office where any emails that have been sent to Samuel have been printed out and then delivered by a volunteer. The volunteer office manages over 600 people who generously donate their time to do many, many jobs throughout the hospital.
Our next stop was the laboratory. Samuel was not at all interested in visiting the lab, but he graciously humored me. The laboratory is a huge, open room that bustles with people and whirring equipment 24 hours a day. We saw some incredible automated machines that are able to work more quickly and efficiently than the humans who used to do the same tasks manually. We had a little tour of the area where blood cultures are incubated and grown. The technologist kindly opened the large incubator for us....very smelly!! We saw several of the machines that are used to process and test Samuel's blood every morning. These blood tests provide the critical information that enables the doctors to monitor Samuel's kidney function and immune suppression.
Before I could get all my questions answered ....will that ever happen??.... Samuel ran out of gas and we headed back up to his room. Later in the evening, he took a long nap. Medically, Samuel is finally stable. Physically, he is very weak and deconditioned. The expectation is that his time in rehab will give him a jump start on rebuilding his strength and stamina. Despite his reserve, Samuel is excited about the next phase of his kidney adventure. He is hoping to be strong enough to play some pond hockey before the ice melts.
Sunday, January 27, 2008
Weekend Ups and Downs
Samuel was SOOO much better on Saturday! He walked, talked, laughed, ate, and even took a shower! It was a great day and cause for much rejoicing! But before I had a chance to get too comfortable with Samuel’s newfound spunk, we were once again in crisis.
Just before midnight on Saturday, Samuel began an episode that included hypertension, slow pulse, irregular heartbeat, chest pain, and headache. It all happened very quickly with a flurry of doctors and activity. Samuel had a slew of blood tests done as well as an EKG, which showed some abnormalities. He was given some intravenous magnesium and calcium.
Samuel’s condition was serious enough to rouse Dr. Guillot from her bed. She arrived at the hospital about 1:30 in the morning and had Samuel transferred downstairs to the ICU. Once again, he was hooked up to a monitor and a Nicardipine drip. By 4 a.m., things had settled down enough that I was able to fall asleep for a few hours in a recliner in Samuel’s room.
Later on Sunday morning, Samuel was weaned off the Nicardipine. The new plan is to give a dose of a quick-acting drug (Nifedipine) whenever Samuel’s blood pressure gets too high. Hopefully, the doctors will come up with a medication combination that will keep his hypertension under control enough that we won’t need to use it often. Samuel has already had to take it twice today.
At 4:00 in the afternoon, Samuel was back up in his room on the pediatric floor. We are both very tired after last night’s excitement. I’m having a hard time keeping my eyes open as I type this.
Please keep praying! We still hope to get to rehab on Monday or Tuesday.
Just before midnight on Saturday, Samuel began an episode that included hypertension, slow pulse, irregular heartbeat, chest pain, and headache. It all happened very quickly with a flurry of doctors and activity. Samuel had a slew of blood tests done as well as an EKG, which showed some abnormalities. He was given some intravenous magnesium and calcium.
Samuel’s condition was serious enough to rouse Dr. Guillot from her bed. She arrived at the hospital about 1:30 in the morning and had Samuel transferred downstairs to the ICU. Once again, he was hooked up to a monitor and a Nicardipine drip. By 4 a.m., things had settled down enough that I was able to fall asleep for a few hours in a recliner in Samuel’s room.
Later on Sunday morning, Samuel was weaned off the Nicardipine. The new plan is to give a dose of a quick-acting drug (Nifedipine) whenever Samuel’s blood pressure gets too high. Hopefully, the doctors will come up with a medication combination that will keep his hypertension under control enough that we won’t need to use it often. Samuel has already had to take it twice today.
At 4:00 in the afternoon, Samuel was back up in his room on the pediatric floor. We are both very tired after last night’s excitement. I’m having a hard time keeping my eyes open as I type this.
Please keep praying! We still hope to get to rehab on Monday or Tuesday.
Friday, January 25, 2008
Friday Update
Well, we didn’t make it to rehab on Thursday. Samuel was down and out with severe nausea, dizziness, and a headache on Wednesday and Thursday. The doctors also weren’t done tweaking his meds, so the obvious decision was to stay put. We hope that Samuel will be well enough to be transferred to rehab early next week.
Since Tuesday, Samuel has been too sick to be up and walking. Based on the timing of this setback, it seemed possible that his difficulties were being caused by an increase in one of his medications. On Thursday, the doctor made a plan to slowly decrease the dose….it is a medication that can’t be stopped suddenly. This morning, Samuel woke up without a headache and was feeling less nauseous (yeah!), so I think we are on the right track with the medication connection.
Unfortunately, the new day also brought a new challenge. The lab results from this morning seem to indicate that Samuel may be having a mild rejection episode. Samuel will get some big doses of prednisone for the next three days. A second immunosuppression medication is being doubled. Please pray that the increased drugs will keep Samuel’s body from mounting a full-fledged rejection.
Samuel had a couple hours this evening when he looked really good! What a change from this morning! He enjoyed a visit with some family and friends. By 11 p.m., he was back to battling with pain and nausea. I'm praying that he will be able to sleep well tonight.
Today marks day number 50 in the hospital for Samuel. Who would have ever imagined?
Since Tuesday, Samuel has been too sick to be up and walking. Based on the timing of this setback, it seemed possible that his difficulties were being caused by an increase in one of his medications. On Thursday, the doctor made a plan to slowly decrease the dose….it is a medication that can’t be stopped suddenly. This morning, Samuel woke up without a headache and was feeling less nauseous (yeah!), so I think we are on the right track with the medication connection.
Unfortunately, the new day also brought a new challenge. The lab results from this morning seem to indicate that Samuel may be having a mild rejection episode. Samuel will get some big doses of prednisone for the next three days. A second immunosuppression medication is being doubled. Please pray that the increased drugs will keep Samuel’s body from mounting a full-fledged rejection.
Samuel had a couple hours this evening when he looked really good! What a change from this morning! He enjoyed a visit with some family and friends. By 11 p.m., he was back to battling with pain and nausea. I'm praying that he will be able to sleep well tonight.
Today marks day number 50 in the hospital for Samuel. Who would have ever imagined?
Tuesday, January 22, 2008
There's Light at the End of this Tunnel
Slowly, but surely, we are getting closer to the end of our stay here. There are only a couple more IV meds to be changed over to oral. Yesterday, we caught a brief glimpse of the “old” Samuel…..he read a whole book in one day!
The doctors have set a goal of getting Samuel well enough to be discharged next week on Monday. Instead of going home, Samuel will be transferred to the rehabilitation program at Fanny Allen Hospital. We don’t yet know how long he will need to be there, but the goal is to get him strong and ready to get back into life. There is a chance that he could go to rehab as soon as Thursday. We just have to see how all the new oral meds settle in. They don’t want to admit him on a Friday or over the weekend, so if he is not ready on Thursday, he’ll go on Monday.
Samuel’s blood pressure was great for about a day. Since this afternoon it has been only okay. He is still having a lot of trouble with nausea. It is really holding him back. Nausea is on the list of possible side effects for most of his medications. His elevated level of blood urea nitrogen could also be a factor. Please pray that this issue disappears or becomes manageable. It is often debilitating for Samuel.
The big excitement for today was changing rooms. Our big room was needed for two babies with RSV, so we packed up and moved across the floor….back to Room 587. It is a familiar and cozy room. Unfortunately, Samuel wasn’t well enough to walk to our new digs, so we rolled him there in his bed.
Keep praying! We are almost there!
The doctors have set a goal of getting Samuel well enough to be discharged next week on Monday. Instead of going home, Samuel will be transferred to the rehabilitation program at Fanny Allen Hospital. We don’t yet know how long he will need to be there, but the goal is to get him strong and ready to get back into life. There is a chance that he could go to rehab as soon as Thursday. We just have to see how all the new oral meds settle in. They don’t want to admit him on a Friday or over the weekend, so if he is not ready on Thursday, he’ll go on Monday.
Samuel’s blood pressure was great for about a day. Since this afternoon it has been only okay. He is still having a lot of trouble with nausea. It is really holding him back. Nausea is on the list of possible side effects for most of his medications. His elevated level of blood urea nitrogen could also be a factor. Please pray that this issue disappears or becomes manageable. It is often debilitating for Samuel.
The big excitement for today was changing rooms. Our big room was needed for two babies with RSV, so we packed up and moved across the floor….back to Room 587. It is a familiar and cozy room. Unfortunately, Samuel wasn’t well enough to walk to our new digs, so we rolled him there in his bed.
Keep praying! We are almost there!
Sunday, January 20, 2008
Happy Birthday, Grace!
For the first time since Christmas morning, our whole family was together today. Everyone gathered in Samuel’s hospital room to celebrate Grace’s 17th birthday. Grandma Peach and Grandpa Ed joined us and brought along a birthday cake and some delicious Spanakopita. After a rough morning, Samuel felt well enough this afternoon to sit up and play a board game with the gang. It was nice to be together.
This makes three birthdays and two major holidays that have been upstaged by Samuel being in the hospital. Additionally, my children have had to make many, many daily sacrifices over these last ten months. A lot has been asked of them.
Please pray for my precious children as the Lord challenges them and squeezes them. Pray that their hearts would be knit together as they love and support each other. Pray for me that I would rest in the knowledge that the Lord will use this season of difficulty for His glory and their ultimate good. Pray for Tom as he deals with the day to day stresses at home, at work, and at the hospital.
The birthday girl!
A roudy game of Clue
Mom, Dad, and a smiling patient!
Email Link
I have added a link on the right-hand sidebar that will connect you to the hospital's website where you can send an email to Samuel. His latest room number is Baird 524. Emails addressed to any of his old room numbers seem to be finding him just fine. The volunteers here are great!
Saturday, January 19, 2008
Day 28
Seems we are still doing the two-steps-forward-one-step-back dance. After an unprecedented two good days in a row, we had a bit of a scare on Friday morning. Samuel woke up with a 9 out of 10 pain rating and was very specific about where it hurt.....his transplanted kidney. He also threw up a couple times and his white count was higher than the day before. A combination of pain killer and sedative helped make him more comfortable and able to sleep through most of the day. They dosed him with a load of prednisone (to reduce inflammation) and decided to wait it out. By evening, the pain was an 8; and by this morning it was a 6.
It is possible that one medication was inhibiting another medication from adequately suppressing his immune system which, in turn, allowed his body to have an inflammatory response to the foreign kidney. Samuel has blood drawn very morning at 6:00. The lab results help the doctors know which medications need to be adjusted. There is likely to be more tweaking as they transition Samuel to oral medications.
Today was a good day. Not much eating, but a little walking and a very little reading.....first book reading that Samuel has done in over six weeks! For those of you who don't know Samuel, he is rarely without a book to read. I know that he is really sick when he is not interested in reading.
Samuel's tube feeding formula was adjusted this evening to reduce the amount of protein he is getting in hopes of slowing down his rising blood urea nitrogen. His potassium has also gotten too high so he was given a dose of a potassium binder at bedtime.
In case I haven't mentioned this lately....Samuel's new kidney is really working....not perfectly (see paragraph above), but definitely working!! His creatinine level was down to 2.34 this morning!! A normal healthy level is about 0.6 to 1.2. After all that Samuel and this kidney have been through, this is truly amazing! Praise be to the Lord God Almighty!
It is possible that one medication was inhibiting another medication from adequately suppressing his immune system which, in turn, allowed his body to have an inflammatory response to the foreign kidney. Samuel has blood drawn very morning at 6:00. The lab results help the doctors know which medications need to be adjusted. There is likely to be more tweaking as they transition Samuel to oral medications.
Today was a good day. Not much eating, but a little walking and a very little reading.....first book reading that Samuel has done in over six weeks! For those of you who don't know Samuel, he is rarely without a book to read. I know that he is really sick when he is not interested in reading.
Samuel's tube feeding formula was adjusted this evening to reduce the amount of protein he is getting in hopes of slowing down his rising blood urea nitrogen. His potassium has also gotten too high so he was given a dose of a potassium binder at bedtime.
In case I haven't mentioned this lately....Samuel's new kidney is really working....not perfectly (see paragraph above), but definitely working!! His creatinine level was down to 2.34 this morning!! A normal healthy level is about 0.6 to 1.2. After all that Samuel and this kidney have been through, this is truly amazing! Praise be to the Lord God Almighty!
Thursday, January 17, 2008
Day 26....Out of the ICU!
This afternoon we moved back to the pediatric floor! We are blessed to have been assigned a wonderful, extra spacious room....Baird 524 for anyone who'd like to know. This is the 10th room that Samuel has occupied since we started this phase of our adventure 6 weeks ago!
Samuel has made some great progress in the last two days! Getting off the Nicardipine drip and out of the ICU was a big step! Despite lowering his pain medication dose (part of the process of getting him out of here), Samuel is moving around more comfortably and has been rating his pain most often at a 5 or 6 (out of 10) instead of the previous 8 or 9. He actually requested some food (watermelon and herring in sour cream!) and has had a few bites of something each day. He is steadier on his feet and able to walk a little farther. Yesterday we took an outing to the main lobby of the hospital. Samuel walked for a bit and then rode in the wheelchair the rest of the way. His nurse wheeled him outside for a few breaths of fresh, cold air.
In addition to getting weaned off the Nicardipine, another objective over the last two days has been to begin transitioning some of Samuel's IV meds to oral meds. That means he is now down to only one IV pole with six pumps instead of two poles with nine pumps. Having to manuever only one pole sure makes getting into the bathroom easier! Right now, about half of his 20 medications are oral and have to be dissolved in water and pushed down his feeding tube. Eventually, Samuel will be able to swallow them all in pill form. That needs to happen before he can be discharged.
This evening Samuel had a nice visit with Kevin and Tyler. He was able to sit up for about an hour and a half to play a couple games. He was wiped out for the rest of the night, but it is great to see what he is able to do on a good day. Lord willing, he'll have many more good days ahead in the near future.
Samuel has made some great progress in the last two days! Getting off the Nicardipine drip and out of the ICU was a big step! Despite lowering his pain medication dose (part of the process of getting him out of here), Samuel is moving around more comfortably and has been rating his pain most often at a 5 or 6 (out of 10) instead of the previous 8 or 9. He actually requested some food (watermelon and herring in sour cream!) and has had a few bites of something each day. He is steadier on his feet and able to walk a little farther. Yesterday we took an outing to the main lobby of the hospital. Samuel walked for a bit and then rode in the wheelchair the rest of the way. His nurse wheeled him outside for a few breaths of fresh, cold air.
In addition to getting weaned off the Nicardipine, another objective over the last two days has been to begin transitioning some of Samuel's IV meds to oral meds. That means he is now down to only one IV pole with six pumps instead of two poles with nine pumps. Having to manuever only one pole sure makes getting into the bathroom easier! Right now, about half of his 20 medications are oral and have to be dissolved in water and pushed down his feeding tube. Eventually, Samuel will be able to swallow them all in pill form. That needs to happen before he can be discharged.
This evening Samuel had a nice visit with Kevin and Tyler. He was able to sit up for about an hour and a half to play a couple games. He was wiped out for the rest of the night, but it is great to see what he is able to do on a good day. Lord willing, he'll have many more good days ahead in the near future.
Tuesday, January 15, 2008
Day 24....Day 40
Today is the 24th day that Samuel has been in the hospital since he was admitted on December 23rd. But it is the 40th day out of the last 41 days that he has been in the hospital. There has only been one day (Dec. 19) in the last 41 that Samuel has not been in the hospital.
Admission #1....Dec. 6th - Dec. 18th....13 days
Admission #2....Dec. 20th - Dec. 22nd....3 days
Admission #3....Dec. 23rd - ???....24 days so far
Total to date = 40 days out of the last 41
In honor of Samuel's 40th day in the hospital, I've been thinking about the significance of this number. There are many references to the number 40 in the Bible....during the flood it rained for 40 days and 40 nights; Moses spent 40 days on Mount Sinai; the Israelites spent 40 years wandering in the wilderness; Jesus fasted for 40 days; and many others. Some Bible scholars believe that 40 represents a period of preparation for some special action of the Lord; a period of grace before some major change or transformation. I sure could get excited about a major change in Samuel's status. Please, Lord?
Hair can grow a lot in 40 days, so a very kind friend came today and cut Samuel's hair. It was a bit of a challenge to do it with him lying down for most of it, but the deed was done and he looks very handsome. Thank you, June!!
Otherwise, there wasn't much progress today. Samuel felt pretty lousy (understatement) all day and the nausea was back to plague him. For a very short time this afternoon, the Nicardipine drip was off. At the moment, we are back up to the "5" setting (1.13 mcg/kg/min). In order to move from the ICU back to the pediatric floor, Samuel needs to be able to maintain a systolic blood pressure under 150 without the Nicardipine IV drip. If he can do it loaded up with a combination of other IV and oral meds, that is acceptable. He just can't be on the pediatric floor with the Nicardipine drip.
I know that we will get there, but the going sure is slow.
Admission #1....Dec. 6th - Dec. 18th....13 days
Admission #2....Dec. 20th - Dec. 22nd....3 days
Admission #3....Dec. 23rd - ???....24 days so far
Total to date = 40 days out of the last 41
In honor of Samuel's 40th day in the hospital, I've been thinking about the significance of this number. There are many references to the number 40 in the Bible....during the flood it rained for 40 days and 40 nights; Moses spent 40 days on Mount Sinai; the Israelites spent 40 years wandering in the wilderness; Jesus fasted for 40 days; and many others. Some Bible scholars believe that 40 represents a period of preparation for some special action of the Lord; a period of grace before some major change or transformation. I sure could get excited about a major change in Samuel's status. Please, Lord?
Hair can grow a lot in 40 days, so a very kind friend came today and cut Samuel's hair. It was a bit of a challenge to do it with him lying down for most of it, but the deed was done and he looks very handsome. Thank you, June!!
Otherwise, there wasn't much progress today. Samuel felt pretty lousy (understatement) all day and the nausea was back to plague him. For a very short time this afternoon, the Nicardipine drip was off. At the moment, we are back up to the "5" setting (1.13 mcg/kg/min). In order to move from the ICU back to the pediatric floor, Samuel needs to be able to maintain a systolic blood pressure under 150 without the Nicardipine IV drip. If he can do it loaded up with a combination of other IV and oral meds, that is acceptable. He just can't be on the pediatric floor with the Nicardipine drip.
I know that we will get there, but the going sure is slow.
Monday, January 14, 2008
Day 23….A good day!
We saw some exciting improvements today….a little eating, a little walking, and a little board game playing....more awake time and no more JP drain! We are another day closer to going home!
The battle with Samuel’s hypertension continues, but eventual victory is assured.
Short post tonight….I need to catch up on my beauty sleep!
The battle with Samuel’s hypertension continues, but eventual victory is assured.
Short post tonight….I need to catch up on my beauty sleep!
Sunday, January 13, 2008
Day 22....Back to the ICU
I’m finding it difficult to write a post this evening. Sometimes I am tired of sharing bad news and sometimes I am just tired. Tonight I am both.
When I last wrote on Friday, Samuel was really struggling. Saturday was even worse. His red blood cell count was extremely low and his white blood cell count was rising again. He was very “out of it” and sometimes incoherent. He had spiked a fever, so they drew more of his precious few red blood cells to try to grow more cultures. They did an adrenal stimulation test to check his adrenal function. They sent him down to radiology for another thorough ultrasound. They wanted to check out his spleen, lymph nodes in his neck, the graft, and his renal fossa (and YOU know what that is!!). It was a long and painful exam for Samuel as the radiologist had to apply pressure on his tender abdomen and neck in order to get good pictures. Thankfully, they didn’t find any surprises during the ultrasound.
There were multiple brains engaged in trying to make sense of Samuel’s degraded condition. In the process, it was discovered that for the last week, Samuel has not been receiving the prednisone dose that they had intended him to get. It is possible that some of his issues have been caused by suddenly (and unintentionally) stopping the prednisone. To correct this, Samuel is back on some big doses of prednisone for 3 days and then will go back to his small daily dose. They also discontinued one antiemetic drug that might have been making him too drowsy. And lastly, they gave him 2 units of packed red blood cells.
Saturday evening, even before receiving the blood transfusion, Samuel’s blood pressure began to be too high. The nurse was in his room very often during the night monitoring both the transfusion and his pressure. There was just a little too much going on for me to sleep, so I took the opportunity to work on a project that Dr. Guillot had asked me to do. She wanted to see all of Samuel’s temperatures from the last 20 days plotted out on a graph. It is just the type of challenge that I enjoy, so it was a great distraction for me during the tense night. I finally went to sleep at 5 a.m. for a couple hours. Hence, my weariness today.
This morning, Samuel was more alert, appeared to be in less pain, talked a little more, and generally seemed much better....except for his blood pressure. It was dangerously high and the decision was made to send him back to the ICU.
So….that is where we are. We seem to be trying out all the ICU rooms. This is room number five for us. It is at the end of the hall where it is quieter, but the view isn't so hot. Oh, well! We hope not to be here too long. Samuel is on a Nicardipine IV drip which will be ever so gradually increased until his blood pressure is where they want it. Meanwhile, they have increased his other BP medications. Once those start taking effect, they will begin the process of slowly backing down on the IV dose. It is a tedious process of tiny steps up and down until everything is stable and where they want it. The process requires close monitoring and can only be done in the ICU.
To remind you of some good news.........
Despite all that Samuel's body has been through since the transplant, the function of his new kidney continues to improve! This is truly amazing! Glory to God!
When I last wrote on Friday, Samuel was really struggling. Saturday was even worse. His red blood cell count was extremely low and his white blood cell count was rising again. He was very “out of it” and sometimes incoherent. He had spiked a fever, so they drew more of his precious few red blood cells to try to grow more cultures. They did an adrenal stimulation test to check his adrenal function. They sent him down to radiology for another thorough ultrasound. They wanted to check out his spleen, lymph nodes in his neck, the graft, and his renal fossa (and YOU know what that is!!). It was a long and painful exam for Samuel as the radiologist had to apply pressure on his tender abdomen and neck in order to get good pictures. Thankfully, they didn’t find any surprises during the ultrasound.
There were multiple brains engaged in trying to make sense of Samuel’s degraded condition. In the process, it was discovered that for the last week, Samuel has not been receiving the prednisone dose that they had intended him to get. It is possible that some of his issues have been caused by suddenly (and unintentionally) stopping the prednisone. To correct this, Samuel is back on some big doses of prednisone for 3 days and then will go back to his small daily dose. They also discontinued one antiemetic drug that might have been making him too drowsy. And lastly, they gave him 2 units of packed red blood cells.
Saturday evening, even before receiving the blood transfusion, Samuel’s blood pressure began to be too high. The nurse was in his room very often during the night monitoring both the transfusion and his pressure. There was just a little too much going on for me to sleep, so I took the opportunity to work on a project that Dr. Guillot had asked me to do. She wanted to see all of Samuel’s temperatures from the last 20 days plotted out on a graph. It is just the type of challenge that I enjoy, so it was a great distraction for me during the tense night. I finally went to sleep at 5 a.m. for a couple hours. Hence, my weariness today.
This morning, Samuel was more alert, appeared to be in less pain, talked a little more, and generally seemed much better....except for his blood pressure. It was dangerously high and the decision was made to send him back to the ICU.
So….that is where we are. We seem to be trying out all the ICU rooms. This is room number five for us. It is at the end of the hall where it is quieter, but the view isn't so hot. Oh, well! We hope not to be here too long. Samuel is on a Nicardipine IV drip which will be ever so gradually increased until his blood pressure is where they want it. Meanwhile, they have increased his other BP medications. Once those start taking effect, they will begin the process of slowly backing down on the IV dose. It is a tedious process of tiny steps up and down until everything is stable and where they want it. The process requires close monitoring and can only be done in the ICU.
To remind you of some good news.........
Despite all that Samuel's body has been through since the transplant, the function of his new kidney continues to improve! This is truly amazing! Glory to God!
Friday, January 11, 2008
Day 20
Early on in Samuel’s hospital stay, it was clear that he needed to feel that he had some control over his situation and what was happening to him. To help eliminate some frustrations that he was having, I encouraged him to make a list of things that he would like to communicate to the doctors and nurses. A sweet person from Child Life took the list and printed it out for us. It included a pre-transplant photo of Samuel with a big grin. I wanted people to catch a vision of the "real" Samuel, not just to see him as the sick kid who was lying in the hospital bed.
Samuel’s list has been taped to the door of each room that he has occupied. Many children at the hospital who are “long-termers” or “frequent flyers” have a sign on their door simply stating their name, interests, and favorite foods or movies. No one has a list quite like Samuel’s.
Samuel’s Manifesto
Samuel’s list has been taped to the door of each room that he has occupied. Many children at the hospital who are “long-termers” or “frequent flyers” have a sign on their door simply stating their name, interests, and favorite foods or movies. No one has a list quite like Samuel’s.
Samuel’s Manifesto
- I prefer to be called Samuel.
- I play the cello.
- I am active, involved, and knowledgeable about my care. Please be respectful of this when interacting with me.
- I prefer as much notice as possible before any medical procedures. I like to know what to expect during and after the procedure.
- Please tell me before doing anything to my body, including taking my temperature, putting medicines in my IV, or drawing blood.
- If you see that my eyes are closed, when you speak, assume that I can hear what you are saying.
- I prefer as few people as possible to press on my belly as it hurts me. If you absolutely have to, please do it gently and give me notice first.
- When it is obvious that I do not feel well, please do not ask me how I am feeling. It frustrates me.
- I prefer to have choices in my care. If you are doing something to me that I can have a choice about (which finger for a finger stick), please present it to me. If I do not have a choice, please tell me what you are going to do and ask me first if I am ready for you to do it.
- Please do not rub my back when I am throwing up!
- I am a Red Sox fan!!
- Please remember that I am a person and not just a patient.
The medical team has responded well to Samuel's list and they do their best to honor his requests. The only troublemaker was Dr. Di Carlo (a.k.a. surgeon/comedian) who wanted to know if there was any significance to the order of the list. He thought it was noteworthy that the statement about Samuel being a Red Sox fan followed immediately after the request not to have his back rubbed while he was vomiting. The man is from Montreal. What can I say!
Wednesday, January 9, 2008
Day 18
This afternoon Samuel was rolled down to radiology. He had a PICC line (peripherally inserted central catheter) placed in his left arm while under sedation. This PICC line will replace the two IVs that he has had in his right arm. These regular peripheral IV sites often become sore and irritated and have to be replaced every few days. Samuel has been keeping track of how many IVs he has had placed. He is sleeping at the moment (thankfully!) or I would ask him for the tally.
Externally, Samuel's PICC line has two lumens (lines) with a clave at each end where the IV lines or a syringe can be connected. Internally, the two lumens lie side by side within one catheter, which runs up a vein in his arm and into his chest, ending a little before the heart. This PICC line will be able to remain in place much longer than a peripheral IV. It can also be used for drawing blood which will spare Samuel being stuck each morning. To reduce the risk of infection, Samuel has a gauze bandage wrapped around his arm where the catheter enters. Overall, this new PICC line will provide better access and be much more comfortable for Samuel.
While Samuel's arm is happy, his back is not. Part two of today's procedure involved placing another drain through Samuel's back into the space where his right kidney used to be....his right renal fossa. (I recommend that you try impressing your friends and neighbors by using the term "renal fossa". It is fun to say and they will likely not have a clue what you are talking about.)
The ultrasound and CT scan that were done yesterday showed a reaccumulation of fluid in the same place where a drain had been placed on Christmas Eve. That drain was removed on January 3rd.
Before placing the new drain, Samuel was rolled onto his stomach and a small group of interested parties gathered to examine the area using ultrasound. I'm told there was some debating, discussing, and general head scratching as they tried to determine what they were looking at. Was it infection? Was it bowel? Was it Surgicel (http://en.wikipedia.org/wiki/Surgicel) left over from the last nephrectomy? It seems the answer was yes, yes, and yes.
At some point in the procedure, Samuel went from being sedated to being under general anesthesia. Guided by ultrasound, a needle was inserted into the area of suspected infection and some fluid was aspirated. It appeared to be pus and was sent off to the lab to be cultured. Hopefully, something will grow out of it and be identified so the infection can be targeted specifically, rather than being treated with broad spectrum antibiotics.
The JP drain (http://en.wikipedia.org/wiki/Jackson-Pratt_drain) was placed, secured with a couple little stitches and thoroughly bandaged. Any and all drainage is collected in a grenade-shaped bulb at the external end of the tubing. The bulb is uncapped, squeezed flat, and recapped. This creates a gentle vacuum effect which draws fluid down the tubing and into the drain. The whole set-up will be flushed multiple times a day in hopes of disrupting and dislodging any infection.
During the procedure, I had to sit out in the hallway and miss out on all the excitement. Dr. Di Carlo was very kind and came out several times to give me a play-by-play. By the way, I will now only be able to say nice things about Dr. Di Carlo and Dr. Guillot, as it seems they have taken to reading my blog. I'm both honored and intimidated!
Samuel went from radiology up to the PACU (post anesthesia care unit....a fancy name for the recovery room) where he woke up, received some pain medication, and went back to sleep. After a bit, he was rolled back up to his room in pediatrics.
This evening the lab results from the antinuclear antigen test confirmed that Samuel is not suffering from drug-induced lupus....a possible side effect of one of his blood pressure medications. Praise God!! The doctors feel confident that the recent decline in Samuel's condition can be attributed to the flair up of the infection. However, the cause of the infection and the reason for its reappearance remain a mystery for the time being. The expectation is that Samuel will start feeling better soon!
Externally, Samuel's PICC line has two lumens (lines) with a clave at each end where the IV lines or a syringe can be connected. Internally, the two lumens lie side by side within one catheter, which runs up a vein in his arm and into his chest, ending a little before the heart. This PICC line will be able to remain in place much longer than a peripheral IV. It can also be used for drawing blood which will spare Samuel being stuck each morning. To reduce the risk of infection, Samuel has a gauze bandage wrapped around his arm where the catheter enters. Overall, this new PICC line will provide better access and be much more comfortable for Samuel.
While Samuel's arm is happy, his back is not. Part two of today's procedure involved placing another drain through Samuel's back into the space where his right kidney used to be....his right renal fossa. (I recommend that you try impressing your friends and neighbors by using the term "renal fossa". It is fun to say and they will likely not have a clue what you are talking about.)
The ultrasound and CT scan that were done yesterday showed a reaccumulation of fluid in the same place where a drain had been placed on Christmas Eve. That drain was removed on January 3rd.
Before placing the new drain, Samuel was rolled onto his stomach and a small group of interested parties gathered to examine the area using ultrasound. I'm told there was some debating, discussing, and general head scratching as they tried to determine what they were looking at. Was it infection? Was it bowel? Was it Surgicel (http://en.wikipedia.org/wiki/Surgicel) left over from the last nephrectomy? It seems the answer was yes, yes, and yes.
At some point in the procedure, Samuel went from being sedated to being under general anesthesia. Guided by ultrasound, a needle was inserted into the area of suspected infection and some fluid was aspirated. It appeared to be pus and was sent off to the lab to be cultured. Hopefully, something will grow out of it and be identified so the infection can be targeted specifically, rather than being treated with broad spectrum antibiotics.
The JP drain (http://en.wikipedia.org/wiki/Jackson-Pratt_drain) was placed, secured with a couple little stitches and thoroughly bandaged. Any and all drainage is collected in a grenade-shaped bulb at the external end of the tubing. The bulb is uncapped, squeezed flat, and recapped. This creates a gentle vacuum effect which draws fluid down the tubing and into the drain. The whole set-up will be flushed multiple times a day in hopes of disrupting and dislodging any infection.
During the procedure, I had to sit out in the hallway and miss out on all the excitement. Dr. Di Carlo was very kind and came out several times to give me a play-by-play. By the way, I will now only be able to say nice things about Dr. Di Carlo and Dr. Guillot, as it seems they have taken to reading my blog. I'm both honored and intimidated!
Samuel went from radiology up to the PACU (post anesthesia care unit....a fancy name for the recovery room) where he woke up, received some pain medication, and went back to sleep. After a bit, he was rolled back up to his room in pediatrics.
This evening the lab results from the antinuclear antigen test confirmed that Samuel is not suffering from drug-induced lupus....a possible side effect of one of his blood pressure medications. Praise God!! The doctors feel confident that the recent decline in Samuel's condition can be attributed to the flair up of the infection. However, the cause of the infection and the reason for its reappearance remain a mystery for the time being. The expectation is that Samuel will start feeling better soon!
Tuesday, January 8, 2008
Day 17
Samuel has had a bit of a setback. The fever and nausea have increased. The doctor is exploring two possible causes. The first is that Samuel may be experiencing a side effect to one of his blood pressure medications. We should have lab results tomorrow that will give us more information.
The second possibility is that Samuel has something going on internally at the site of the abscess that was previously treated. An ultrasound this afternoon showed a collection of fluid and a possible thickened bowel wall. It needs to be looked at closer with a CT scan. Since 5:30 this evening, a contrast fluid has been going down Samuel's feeding tube. At midnight, he'll have an x-ray taken to determine if there is enough contrast filling his intestines. If not, they'll add more. If so, they will proceed with the CT scan sometime in the wee hours of the morning.
This will definitely be a long night! Please pray that we would get some clarity and get this boy well!!
The second possibility is that Samuel has something going on internally at the site of the abscess that was previously treated. An ultrasound this afternoon showed a collection of fluid and a possible thickened bowel wall. It needs to be looked at closer with a CT scan. Since 5:30 this evening, a contrast fluid has been going down Samuel's feeding tube. At midnight, he'll have an x-ray taken to determine if there is enough contrast filling his intestines. If not, they'll add more. If so, they will proceed with the CT scan sometime in the wee hours of the morning.
This will definitely be a long night! Please pray that we would get some clarity and get this boy well!!
Monday, January 7, 2008
Day 16
Two steps forward, one step back. I recognize this dance.
Samuel was down and out with a headache all day today. By 9 p.m. he had a fever and nausea. His white blood cell count has almost doubled since this morning. Blood was drawn for more cultures. Samuel's nausea is pretty severe. The nurse is doing all she can to make him comfortable.
Looks like it is going to be a long night.
Samuel was down and out with a headache all day today. By 9 p.m. he had a fever and nausea. His white blood cell count has almost doubled since this morning. Blood was drawn for more cultures. Samuel's nausea is pretty severe. The nurse is doing all she can to make him comfortable.
Looks like it is going to be a long night.
Sunday, January 6, 2008
Day 15
Well, fix one problem and create another.....
Yesterday, Samuel was started on another drug to control his nausea. The fancy medical term for this kind of medication is called an "antiemetic". At the hospital, instead of saying puke, throw-up, or vomit like ordinary people, they call the stuff "emesis". It comes from the Greek word "emein", meaning "to vomit". Just thought you might need to know this someday.
Anyway, this new antiemetic did a great job of curbing Samuel's nausea. Unfortunately, it came with a very unpleasant side effect. Despite being exhausted last night, Samuel had a difficult time settling down to sleep. His legs hurt and they just didn't want to be still. This morning, the restlessness only got worse. It was physical and mental torture for Samuel. He was quite distraught.
From Samuel's description of what he was feeling, it sounded to me like restless leg syndrome. I did some quick reading about RLS and came up with several possible causes that could apply to Samuel....iron deficiency, kidney failure, bleeding from the stomach, and use of some antiemetic drugs. I went to brainstorm with the pediatric resident and while waiting for him to finish a phone call, the doctor that has been working with us on Samuel's pain management plan just "happened" to arrive. I was able to share with him my observations and newly acquired information. He said he needed 10 minutes to do his own research and would come down to the room. Well, it only took him about 5 minutes to decide that Samuel was experiencing a side effect from the Compazine (Prochlorperazine) that he had prescribed yesterday. Thankfully, Samuel hadn't yet had his evening dose. Instead he was given pain medication and Benadryl and soon had significant relief. We were able to spend a pleasant evening watching a movie (thanks again, Ryan!) and even played a board game together!
Some other nice things that happened today....
This morning we moved from our tiny little room to one that is a tad bigger. It will still be a tight squeeze if all the girls come for a visit, but I'm grateful for the extra elbow room.
Speaking of visits, we had a nice one from Grandma Peach and Grandpa Ed today. They brought us a portable Sunbox light that we can use in our room. Samuel and I haven't had any direct sunlight for 2 weeks. I'm eager to get refueled! They also brought me some good food! Thank you!
The other exciting event for today was that I was able to do some laundry in the Ronald McDonald Family Room. Not too exciting for you maybe, but after so many days in the hospital, hot showers, hot food, and clean laundry rank pretty high on my top 10 list. This most recent hospital stint began back on December 6th when Samuel came to the hospital for a kidney biospy which was followed by a nephrectomy the next day. In the last 32 days between December 6th and January 6th, Samuel and I have slept in our own beds only 3 times. That many days away from home causes one to be immensely grateful for the basic amenities.
Speaking of beds, I would truly be insane by now except for the kindness of our dear friend, Mrs. Knox. Very early in this hospital stay, she gifted me with an air mattress and pump. My nights are often short and interrupted, but when I am able to sleep, I sleep very comfortably! Thank you, Katherine! I am forever grateful!
As I type this, Samuel is sitting in bed eating some chicken soup. Wow! We have really made some good progress today! We are one day closer to going home! Praise the Lord!
Change of address:
Samuel Smith
Baird 587
Email link: http://www.fahc.org/General_Public/Volunteers/email.html
Yesterday, Samuel was started on another drug to control his nausea. The fancy medical term for this kind of medication is called an "antiemetic". At the hospital, instead of saying puke, throw-up, or vomit like ordinary people, they call the stuff "emesis". It comes from the Greek word "emein", meaning "to vomit". Just thought you might need to know this someday.
Anyway, this new antiemetic did a great job of curbing Samuel's nausea. Unfortunately, it came with a very unpleasant side effect. Despite being exhausted last night, Samuel had a difficult time settling down to sleep. His legs hurt and they just didn't want to be still. This morning, the restlessness only got worse. It was physical and mental torture for Samuel. He was quite distraught.
From Samuel's description of what he was feeling, it sounded to me like restless leg syndrome. I did some quick reading about RLS and came up with several possible causes that could apply to Samuel....iron deficiency, kidney failure, bleeding from the stomach, and use of some antiemetic drugs. I went to brainstorm with the pediatric resident and while waiting for him to finish a phone call, the doctor that has been working with us on Samuel's pain management plan just "happened" to arrive. I was able to share with him my observations and newly acquired information. He said he needed 10 minutes to do his own research and would come down to the room. Well, it only took him about 5 minutes to decide that Samuel was experiencing a side effect from the Compazine (Prochlorperazine) that he had prescribed yesterday. Thankfully, Samuel hadn't yet had his evening dose. Instead he was given pain medication and Benadryl and soon had significant relief. We were able to spend a pleasant evening watching a movie (thanks again, Ryan!) and even played a board game together!
Some other nice things that happened today....
This morning we moved from our tiny little room to one that is a tad bigger. It will still be a tight squeeze if all the girls come for a visit, but I'm grateful for the extra elbow room.
Speaking of visits, we had a nice one from Grandma Peach and Grandpa Ed today. They brought us a portable Sunbox light that we can use in our room. Samuel and I haven't had any direct sunlight for 2 weeks. I'm eager to get refueled! They also brought me some good food! Thank you!
The other exciting event for today was that I was able to do some laundry in the Ronald McDonald Family Room. Not too exciting for you maybe, but after so many days in the hospital, hot showers, hot food, and clean laundry rank pretty high on my top 10 list. This most recent hospital stint began back on December 6th when Samuel came to the hospital for a kidney biospy which was followed by a nephrectomy the next day. In the last 32 days between December 6th and January 6th, Samuel and I have slept in our own beds only 3 times. That many days away from home causes one to be immensely grateful for the basic amenities.
Speaking of beds, I would truly be insane by now except for the kindness of our dear friend, Mrs. Knox. Very early in this hospital stay, she gifted me with an air mattress and pump. My nights are often short and interrupted, but when I am able to sleep, I sleep very comfortably! Thank you, Katherine! I am forever grateful!
As I type this, Samuel is sitting in bed eating some chicken soup. Wow! We have really made some good progress today! We are one day closer to going home! Praise the Lord!
Change of address:
Samuel Smith
Baird 587
Email link: http://www.fahc.org/General_Public/Volunteers/email.html
Saturday, January 5, 2008
Day 14
For one hour this morning, Samuel felt well enough to open some mail and read some emails. It was one short, precious hour. The rest of the day was a bummer. It is hard to see the progress from day to day, but if I look back to last week, we are definitely further along.
One big praise report in the midst of all this difficulty is that Samuel has not had dialysis since Sunday, December 23rd. This is fantastic! His creatinine is high, but holding more or less steady. His blood urea nitrogen continues to inch its way upward, but a high BUN alone wouldn't necessarily drive the need for dialysis. His carbon dioxide level was too low today (meaning his blood is too acidic) but, otherwise, his electrolytes are staying within safe ranges.
We will just have to continue to wait and see what happens.
One big praise report in the midst of all this difficulty is that Samuel has not had dialysis since Sunday, December 23rd. This is fantastic! His creatinine is high, but holding more or less steady. His blood urea nitrogen continues to inch its way upward, but a high BUN alone wouldn't necessarily drive the need for dialysis. His carbon dioxide level was too low today (meaning his blood is too acidic) but, otherwise, his electrolytes are staying within safe ranges.
We will just have to continue to wait and see what happens.
Thursday, January 3, 2008
Day 12....Moving up!
Today was Samuel's big move up to the pediatric floor! It is one giant step closer to home!
The doctors wanted to remove Samuel's drain before sending him upstairs, so after an ultrasound to check the status of the abscess, the drain was pulled from his back. That is one source of pain now gone!
Samuel's fever continues to come and go, but it is less often and not as high. Unfortunately, ongoing nausea and vomiting still contribute to his general misery. Medications and nutritional feeds are being tweaked and changed. A couple days ago, four of the antibiotics were swapped for three others on the chance that the fever is drug-related. So far the change hasn't seemed to make a difference, but the medications can remain in the body for several days. A decision was made this evening to discontinue all antibiotics as it is not clear that Samuel needs them and they could be contributing to the problem. Lots of trial and error! It is very possible that we may never know the real cause of all this trouble. We'll have to be satisfied just to have Samuel get well.
I am very grateful for all the emails that have been sent through the hospital! What great encouragers you all are! Thank you so much!
New address:
Samuel Smith
Baird 591
The doctors wanted to remove Samuel's drain before sending him upstairs, so after an ultrasound to check the status of the abscess, the drain was pulled from his back. That is one source of pain now gone!
Samuel's fever continues to come and go, but it is less often and not as high. Unfortunately, ongoing nausea and vomiting still contribute to his general misery. Medications and nutritional feeds are being tweaked and changed. A couple days ago, four of the antibiotics were swapped for three others on the chance that the fever is drug-related. So far the change hasn't seemed to make a difference, but the medications can remain in the body for several days. A decision was made this evening to discontinue all antibiotics as it is not clear that Samuel needs them and they could be contributing to the problem. Lots of trial and error! It is very possible that we may never know the real cause of all this trouble. We'll have to be satisfied just to have Samuel get well.
I am very grateful for all the emails that have been sent through the hospital! What great encouragers you all are! Thank you so much!
New address:
Samuel Smith
Baird 591
Tuesday, January 1, 2008
Day 10....Happy New Year!
Yesterday, Samuel made it a full 24 hours without a fever or vomiting! His big excitement for the day was an ambulance ride to another hospital to have the PET scan. It is actually a mobile unit that is on a tractor trailer truck. It comes to the area once a week on Mondays and every other Tuesday. The Medical Center doesn’t have a place where the truck can be set up so it parks over at Fanny Allen Hospital, one town away. The whole outing took about 4 hours. The scan showed no sign of a bone infection. Praise the Lord!
For New Year’s Eve, he ate some food for the first time in many days and watched some fireworks from a hospital window. It was pretty exciting to see him sitting up for a few hours. Unfortunately, the fever and vomiting returned in the morning.
Samuel spent the first day of the New Year sleeping. He is back to not eating and is too weak to walk the halls. We pray that his body will use both the rest and the medicine to continue the healing process.
For New Year’s Eve, he ate some food for the first time in many days and watched some fireworks from a hospital window. It was pretty exciting to see him sitting up for a few hours. Unfortunately, the fever and vomiting returned in the morning.
Samuel spent the first day of the New Year sleeping. He is back to not eating and is too weak to walk the halls. We pray that his body will use both the rest and the medicine to continue the healing process.
Subscribe to:
Posts (Atom)
Posts
