Today was Alan's neurolytic lumbar puncture. We had a last minute change in venue - instead of the Children's Hospital we were going to an outpatient surgery center just down the street. Apparently the hospital was not used to doing the procedure and were reluctant.
After getting checked in and getting Alan set up on a gurney, we started going over different aspects of the procedure with the anesthesiologist, the nurse and Doc E. The anesthesiologist will start with a little Versed to relax him, put him to sleep with Propofol, then give him gas to keep him asleep since they need to keep him absolutely still during the procedure. When the nurse came by, we realized that since they were going through his back, since this procedure is essentially a lumbar puncture, they would need to remove the nephrostomy dressings. We asked if they could wash and redress them and restitch the suture on one of the tubes that had come out.
Doc E came to see us to go over any last minute questions. Nothing had changed. We were willing to live with the downsides of the spinal since we are in fact living with them to some extent already. Doc E asked for permission to write a paper on Alan's case if the procedure worked, since there is so little literature on the subject.
The procedure went quickly and smoothly. the longest part being the waiting for the alcohol to sit and do it's job. We soon met up with Alan in a recovery room where he snoozed away on the gurney.
Now we just have to wait and see if it worked.
Showing posts with label Outpatient. Show all posts
Showing posts with label Outpatient. Show all posts
Thursday, December 20, 2012
Wednesday, November 28, 2012
CT
We went into the Children's Hospital for Alan's CT scan today. Being NPO was not a difficulty anymore since he's on TPN now. We wanted to let Alan stay awake since he had managed to do so at MDA in September and that would mean a quicker trip to Radiology today. The anesthesiologist set him him up with Propofol just in case and we ended needing it after all. In September, Alan was fascinated with the CT machine and it held his attention long enough for them to take the scan. This time, he was too excited and curious and kept fidgeting around to get a better look. Even with the sedation, things went smoothly and after a snooze in the PACU we were on our way.
Playing in Pedi Prep & Hold
Going for a ride to the CT
Checking out the CT equipment
Recovering in the PACU
Playing in Pedi Prep & Hold
Going for a ride to the CT
Checking out the CT equipment
Recovering in the PACU
Wednesday, November 21, 2012
Transfusion
As planned during yesterday's office visit, we came into the Children's Cancer and Blood center for a blood transfusion before the Thanksgiving holiday.
Kevin came too so we could all spend time together. Alan once again chose to hang out in the playroom, watching the Sesame Street numbers DVD and going through all the different toys. Near the end of the transfusion he was getting a little tired, so we brought one of the kiddie recliners over so he could sit back and watch TV while we finished up.
Kevin came too so we could all spend time together. Alan once again chose to hang out in the playroom, watching the Sesame Street numbers DVD and going through all the different toys. Near the end of the transfusion he was getting a little tired, so we brought one of the kiddie recliners over so he could sit back and watch TV while we finished up.
Friday, November 2, 2012
Another stitch
While getting his IJC dressing changed, we noticed that the other suture had come loose. We had already gone to the ER back in October to get a new suture put in - now it was time to replace the other side. The doc in the ER this time was not familiar with propofol so he used ketamine instead. It still took a lot to get Alan sedated enough to replace the stitch to stabilize his line, and unlike the propofol, it took Alan longer to wake up from it.
Wednesday, October 3, 2012
A trip to the ER
Doc P sent us to the Pediatric ER just down the hill from us to get a new suture on his IJC line. He called ahead so they knew to expect us. Since he wasn't NPO they couldn't give him anesthesia. The ER doc had suggested giving him some Ativan to calm him down for the stitch. They only needed to do one, but they would need him to be absolutely still. After discussing the situation, we decided to go ahead and sedate him with careful monitoring.
While we were waiting in the treatment room, we were surprised to see Sandy, one of the nurses from Pedi Prep and Hold at the Children's Hospital Radiology department. She had been there the day that Alan was diagnosed over three years ago and has seen Alan through a lot of his treatment. When the tumor first reappeared we started doing our scans at MD Anderson so we hadn't seen her in a while. It was a pleasant surprise to see her again and she couldn't get over how big Alan had grown.
It took some time to hook Alan up to the monitors and prepare everything. The doc wanted to be sure everything was ready before pushing the Propofol since he wanted Alan under for as little time as possible. It took a while to get Alan under - he's used to it which is good and bad. We know it's effective with little side effects. However, since the ER doc wasn't an anesthesiologist, he was being cautious in administering the drug and every time we thought he was under, Alan would fight it off. When he finally fell asleep, the doc worked quickly, but even so Alan was starting to stir by the time they were starting to put the dressing over the IJC line. So much for Mommy's plan to trim his nails before he woke up!
He was awake and alert almost immediately. The doc couldn't believe it, especially given the amount of Propofol he had to use. Since this was a pretty tough dressing change, we agreed when he asked (again!) to go to Chuck E. Cheese. It was the least we could do for him.
Alan in Triage
Is he sleepy yet?
Alan and Sandy
At Chuck E Cheese after
While we were waiting in the treatment room, we were surprised to see Sandy, one of the nurses from Pedi Prep and Hold at the Children's Hospital Radiology department. She had been there the day that Alan was diagnosed over three years ago and has seen Alan through a lot of his treatment. When the tumor first reappeared we started doing our scans at MD Anderson so we hadn't seen her in a while. It was a pleasant surprise to see her again and she couldn't get over how big Alan had grown.
It took some time to hook Alan up to the monitors and prepare everything. The doc wanted to be sure everything was ready before pushing the Propofol since he wanted Alan under for as little time as possible. It took a while to get Alan under - he's used to it which is good and bad. We know it's effective with little side effects. However, since the ER doc wasn't an anesthesiologist, he was being cautious in administering the drug and every time we thought he was under, Alan would fight it off. When he finally fell asleep, the doc worked quickly, but even so Alan was starting to stir by the time they were starting to put the dressing over the IJC line. So much for Mommy's plan to trim his nails before he woke up!
He was awake and alert almost immediately. The doc couldn't believe it, especially given the amount of Propofol he had to use. Since this was a pretty tough dressing change, we agreed when he asked (again!) to go to Chuck E. Cheese. It was the least we could do for him.
Alan in Triage
Is he sleepy yet?
Alan and Sandy
At Chuck E Cheese after
Tuesday, February 21, 2012
MRI at MDA
The alphabet soup in the title just means we are in Houston for scans to see how well this new chemo regimen (Gemcitabine and Docetaxel) works on Alan's tumor. We checked into the Rotary House last night and had a relatively easy morning since we didn't need to show up at the Children's Cancer Clinic for his IV until 8:30. For the first time Alan did not wail when crossing the skybridge to the hospital.
They were running a little behind at the clinic so Alan got to smash some Play-Doh, build train tracks, and paint with his big brother Kevin while Mommy and Daddy visited with our friends the Smits. It was a stroke of good luck and great timing that this visit to MD Anderson coincided with Tristan's one year followup with the Proton Therapy Center and the Smit's trip from their home in South Africa.
The MRI went smoothly, though Alan took his own sweet time waking up from the Propofol. After an hour he was still seemingly snoozing, though he was aware enough to say "No" to juice, "No" to ice cream, but "Yes" to popsicle.
After lunch and a treat it was time to head back to the hotel for a family nap before going out to meet with the Smits. We will be back tomorrow morning to see Doc H2 and Doc L about the results of the MRI.
Alan loves smashing Play-Doh
Alan building train tracks while Tristan and his daddy Pierre watch
Kevin and Alan painting
Criss Cross Applesauce, watching Thomas the Train and waiting for the MRI
Kevin gives Alan a kiss
They were running a little behind at the clinic so Alan got to smash some Play-Doh, build train tracks, and paint with his big brother Kevin while Mommy and Daddy visited with our friends the Smits. It was a stroke of good luck and great timing that this visit to MD Anderson coincided with Tristan's one year followup with the Proton Therapy Center and the Smit's trip from their home in South Africa.
The MRI went smoothly, though Alan took his own sweet time waking up from the Propofol. After an hour he was still seemingly snoozing, though he was aware enough to say "No" to juice, "No" to ice cream, but "Yes" to popsicle.
After lunch and a treat it was time to head back to the hotel for a family nap before going out to meet with the Smits. We will be back tomorrow morning to see Doc H2 and Doc L about the results of the MRI.
Alan loves smashing Play-Doh
Alan building train tracks while Tristan and his daddy Pierre watch
Kevin and Alan painting
Criss Cross Applesauce, watching Thomas the Train and waiting for the MRI
Kevin gives Alan a kiss
Tuesday, February 7, 2012
Kicking back
We came back to the Children's Blood and Cancer Clinic today for a blood transfusion. We haven't been here for over a year, but there were a lot of familiar faces as some of the nurses and support staff from the 4th Floor HEM/ONC ward were now at the clinic. Two and three years ago we would be put into a private room since we had to keep Alan in a Pack'n'Play or corralled on a couch. Alan's a big boy now and he sat on one of the little recliners we had noticed the first time we came in for a transfusion.
Alan covered himself with Sponge Bob Squarepants stickers while the nurse pushed his pre-meds - Tylenol, Benedryl, a steroid, Lasiks, and Zofran. There was a little delay because the bag of blood sent in was so large. The nurse was not sure if Doc P wanted Alan to have the entire volume and if so, we would need to stay longer otherwise the rate would be too much. We ended up starting around 12:40 while the movie Cars played and Alan munched on goldfish crackers.
He had drifted off to sleep while kicking back in the kiddie recliner when Doc P called back - the volume of the blood in bag varies from unit to unit and apparently the one they gave Alan was a rather large one. So we finished the transfusion at 2:00 and headed home, with Alan still asleep.
Carefully placing the Sponge Bob stickers
Sleepy time!
Alan covered himself with Sponge Bob Squarepants stickers while the nurse pushed his pre-meds - Tylenol, Benedryl, a steroid, Lasiks, and Zofran. There was a little delay because the bag of blood sent in was so large. The nurse was not sure if Doc P wanted Alan to have the entire volume and if so, we would need to stay longer otherwise the rate would be too much. We ended up starting around 12:40 while the movie Cars played and Alan munched on goldfish crackers.
He had drifted off to sleep while kicking back in the kiddie recliner when Doc P called back - the volume of the blood in bag varies from unit to unit and apparently the one they gave Alan was a rather large one. So we finished the transfusion at 2:00 and headed home, with Alan still asleep.
Carefully placing the Sponge Bob stickers
Sleepy time!
Thursday, December 29, 2011
MD Anderson testing day #2
Alan had a very restless night, probably due to congestion. There's no fever or cough and when the anesthesiologist checked his lungs they were clear so it's probably just allergies. I bundled him off in his PJs across the skybridge to the hospital, leaving Kevin with our friend Aimee who had come last night to help out since Harold had to head back to work last night. Alan was not happy to make that familiar trip into MD Anderson, especially since he wasn't allowed to have anything to eat or drink.
After checking in with Diagnostic Imaging we went to Infusion Therapy to have his port accessed. Then it was back to Diagnostic Imaging where we changed Alan into a hospital gown when a bed in the pre-op ward opened up for us.
The Interventional Radiologist, one of the doctors who would be doing Alan's needle biopsy, came by to see Alan and answer questions. The procedure itself would take about 20 minutes, though they would have him for about an hour since they had to prepare him for anesthesia (that would take longer than the biopsy itself). They would use a series of CAT scans to guide the needle for the biopsy, and the doctor said he would just have a little pain at the site the needle was inserted, with no more recovery than if he got a shot.
The anesthesiologist came by to introduced herself. I asked if Alan's congestion would be a problem, but with his lungs clear that wasn't an issue. Now it was just time to wait. Alan had been happy to play with the wooden puzzle game on the Touch Pad, his calculator and his AquaDoodle for a while, but he started to get bored. We started to play "Alan's Turn, Mommy's Turn" with the penguin mask, with Alan charming the nurses, another patient across the room, and the ladies from Child Life who came by to see how he was doing. They came back with some new toys to hold him until they wheeled him off.
Alan was curled up under warm blankets when he came out. We were put into our usual room at the end of the PACU. He snoozed away happily for a while, but was quite cranky when he woke up. He acted like he was in pain so we gave him a little more fentanyl. He refused juice or milk, but he perked up when we offered him ice cream. They had some popsicles sent down from the pediatric floor and he was content to lie down and lick away at his popsicle, and then a second. He asked for a third but since he was obviously feeling better there was no point in taking up a bed. It took a while to clean up the sticky mess and get him dressed, but then it was time to head over the skybridge to back to the hotel and then meet up with Kevin, Aimee and her kids Gavin and Gwendolyn. We braved the crowds at Hermann Park for a trip to the zoo, where Alan had a great time climbing through an aquatic tunnel. Hopefully all the fresh air means he will fall asleep quickly tonight!
Mmm, it's nice to wake up to a popsicle!
How fun to crawl through a fish tank!
After checking in with Diagnostic Imaging we went to Infusion Therapy to have his port accessed. Then it was back to Diagnostic Imaging where we changed Alan into a hospital gown when a bed in the pre-op ward opened up for us.
The Interventional Radiologist, one of the doctors who would be doing Alan's needle biopsy, came by to see Alan and answer questions. The procedure itself would take about 20 minutes, though they would have him for about an hour since they had to prepare him for anesthesia (that would take longer than the biopsy itself). They would use a series of CAT scans to guide the needle for the biopsy, and the doctor said he would just have a little pain at the site the needle was inserted, with no more recovery than if he got a shot.
The anesthesiologist came by to introduced herself. I asked if Alan's congestion would be a problem, but with his lungs clear that wasn't an issue. Now it was just time to wait. Alan had been happy to play with the wooden puzzle game on the Touch Pad, his calculator and his AquaDoodle for a while, but he started to get bored. We started to play "Alan's Turn, Mommy's Turn" with the penguin mask, with Alan charming the nurses, another patient across the room, and the ladies from Child Life who came by to see how he was doing. They came back with some new toys to hold him until they wheeled him off.
Alan was curled up under warm blankets when he came out. We were put into our usual room at the end of the PACU. He snoozed away happily for a while, but was quite cranky when he woke up. He acted like he was in pain so we gave him a little more fentanyl. He refused juice or milk, but he perked up when we offered him ice cream. They had some popsicles sent down from the pediatric floor and he was content to lie down and lick away at his popsicle, and then a second. He asked for a third but since he was obviously feeling better there was no point in taking up a bed. It took a while to clean up the sticky mess and get him dressed, but then it was time to head over the skybridge to back to the hotel and then meet up with Kevin, Aimee and her kids Gavin and Gwendolyn. We braved the crowds at Hermann Park for a trip to the zoo, where Alan had a great time climbing through an aquatic tunnel. Hopefully all the fresh air means he will fall asleep quickly tonight!
Mmm, it's nice to wake up to a popsicle!
How fun to crawl through a fish tank!
Wednesday, October 26, 2011
Scans at MD Anderson
It was time for Alan's quarterly scans at MD Anderson today. We headed out to Houston the night before for an overnight stay at the Rotary House so we could be at the hospital bright and early for the scans.
The X-Rays went smoothly, but there was some frustration going back and forth on where we had to go to access Alan's port. To compound matters, we weren't getting any blood return, so after being accessed at Infusion Therapy and having TPA administered, we had to sit around with the TPA for an hour while playing at Children's Clinic. After an hour, we headed back to Infusion Therapy to have the port flushed (the TPA did the job, yay!) and then *back* to the Children's Clinic to have the blood drawn. If that sounds annoying, then imagine actually running around like that.
Needless to say our MRI was delayed, but we eventually made it. Alan is a big boy now, so he waited sitting in the big chair. The MRI went smoothly and we were back with Alan in an hour. Alan slept off the Propyphol for another hour and then woke up for some apple juice.
After he recovered, we went to ICU to take cookies to the staff and visit everyone who had taken such good care of Alan last December. Two of the nurses who had watched Alan were there and loved seeing how much he had grown and his full head of hair. Alan was still so woozy from the anesthesia, so he was playing with Toca Doctor while they were ooh'ing and ahh'ing over him. He stretched out and put his hands behind his head, which had everyone smiling. They all remembered his file picture and how he used to do that all the time!
While we were waiting, we got some good news from one of Alan's fellow warriors. Tristan, our little friend from South Africa, had scans the day before Alan. The tumors in his brain have showed no growth, and in fact have shrunk a little. Considering Tristan's parents were told this time last year that he was a terminal case, this is more than wonderful news, it's a miracle!
Now it's off to see Doc L for our surgical follow up.
Alan drawing while waiting for the MRI
Big boy chair!
Off with Daddy to the MRI!
Post MRI with a penguin mask.
Mmmmm, juice!
Visiting ICU
The X-Rays went smoothly, but there was some frustration going back and forth on where we had to go to access Alan's port. To compound matters, we weren't getting any blood return, so after being accessed at Infusion Therapy and having TPA administered, we had to sit around with the TPA for an hour while playing at Children's Clinic. After an hour, we headed back to Infusion Therapy to have the port flushed (the TPA did the job, yay!) and then *back* to the Children's Clinic to have the blood drawn. If that sounds annoying, then imagine actually running around like that.
Needless to say our MRI was delayed, but we eventually made it. Alan is a big boy now, so he waited sitting in the big chair. The MRI went smoothly and we were back with Alan in an hour. Alan slept off the Propyphol for another hour and then woke up for some apple juice.
After he recovered, we went to ICU to take cookies to the staff and visit everyone who had taken such good care of Alan last December. Two of the nurses who had watched Alan were there and loved seeing how much he had grown and his full head of hair. Alan was still so woozy from the anesthesia, so he was playing with Toca Doctor while they were ooh'ing and ahh'ing over him. He stretched out and put his hands behind his head, which had everyone smiling. They all remembered his file picture and how he used to do that all the time!
While we were waiting, we got some good news from one of Alan's fellow warriors. Tristan, our little friend from South Africa, had scans the day before Alan. The tumors in his brain have showed no growth, and in fact have shrunk a little. Considering Tristan's parents were told this time last year that he was a terminal case, this is more than wonderful news, it's a miracle!
Now it's off to see Doc L for our surgical follow up.
Alan drawing while waiting for the MRI
Big boy chair!
Off with Daddy to the MRI!
Post MRI with a penguin mask.
Mmmmm, juice!
Visiting ICU
Friday, September 30, 2011
Ultrasound and tests
Today, Alan was scheduled for an abdominal ultrasound and a kidney function test at the hospital.
The ultrasound went fairly quickly. Alan enjoyed lying down in the quiet, darkened room while watching the images on the ultrasound machine. We think he actually looks forward to ultrasounds now, because he is so fascinated by the images and sounds of his own heart and lungs.
The kidney function test he hasn't been enjoying nearly as much though. He already wasn't happy when we first got to the Radiology Pedi Prep & Hold room... he recognized it as the not fun place. Things got more complicated when we couldn't get any blood return from his port. We tried a couple of needles with no results. Eventually, we decided to go with an IV so we wouldn't be delayed anymore... because the kidney test takes some time.
The kidney test is very simple. Basically, after drawing a little bit of blood for a baseline measurement, Alan is injected with a small amount of tracer fluid. This fluid is processed by the kidneys and decreases in the blood over time. Two blood draws are done to measure the amount of decrease. The problem is that the draw intervals are one and three hours after the initial injection... so there is a lot of 'not much to do' time. At least he has no restrictions once the test starts... he can eat and drink to his heart's content. We decided to hang out in the children's ER area at the children's play section... he had fun with several toys. But he was happy to leave the hospital once we were done!
The ultrasound went fairly quickly. Alan enjoyed lying down in the quiet, darkened room while watching the images on the ultrasound machine. We think he actually looks forward to ultrasounds now, because he is so fascinated by the images and sounds of his own heart and lungs.
The kidney function test he hasn't been enjoying nearly as much though. He already wasn't happy when we first got to the Radiology Pedi Prep & Hold room... he recognized it as the not fun place. Things got more complicated when we couldn't get any blood return from his port. We tried a couple of needles with no results. Eventually, we decided to go with an IV so we wouldn't be delayed anymore... because the kidney test takes some time.
The kidney test is very simple. Basically, after drawing a little bit of blood for a baseline measurement, Alan is injected with a small amount of tracer fluid. This fluid is processed by the kidneys and decreases in the blood over time. Two blood draws are done to measure the amount of decrease. The problem is that the draw intervals are one and three hours after the initial injection... so there is a lot of 'not much to do' time. At least he has no restrictions once the test starts... he can eat and drink to his heart's content. We decided to hang out in the children's ER area at the children's play section... he had fun with several toys. But he was happy to leave the hospital once we were done!
Wednesday, July 27, 2011
Surgical Follow Up and MRI 7/27
A quick overnight trip to MD Anderson for another MRI and appointment with Doc L, except we saw her PA Kristi instead. The boys thought it was quite an adventure, with ice cream two times a day and a great big bed to romp in with lots of pillows.
Once again, Alan was very unhappy crossing the skybridge from the hotel to the hospital - he knew what this meant. First, a stop by the Children's Clinic to access his port and draw blood. He got a handful of foam letters which he hung on to for the rest of the day.
The x-rays went pretty smoothly but he fought the sedation for the MRI all the way down. Because we were seen in the Sarcoma Clinic so quickly Kristi only had the preliminary results. She will e-mail the full report when it is available, but for now we know that there is no growth of the tumor, the lymph nodes are not any more enlarged than they were in April (it is expected that they will be enlarged for quite a while because of the surgery), and there seemed to be a stress mark on top of the femur. Kristi even got to see Alan walk from the waiting area to the exam room using his new gait trainer. She took video of it for Doc L to see and was very happy with how he was walking. All in all, good news!
Even with the administrivia discussions on the parking pass, aquatic therapy and scheduling the scans and appointments for the next follow up in three months, we were done it half an hour. We were done before we knew it and on our way to IKEA!
Alan splashing in the tub pre-MRI
Once again, Alan was very unhappy crossing the skybridge from the hotel to the hospital - he knew what this meant. First, a stop by the Children's Clinic to access his port and draw blood. He got a handful of foam letters which he hung on to for the rest of the day.
The x-rays went pretty smoothly but he fought the sedation for the MRI all the way down. Because we were seen in the Sarcoma Clinic so quickly Kristi only had the preliminary results. She will e-mail the full report when it is available, but for now we know that there is no growth of the tumor, the lymph nodes are not any more enlarged than they were in April (it is expected that they will be enlarged for quite a while because of the surgery), and there seemed to be a stress mark on top of the femur. Kristi even got to see Alan walk from the waiting area to the exam room using his new gait trainer. She took video of it for Doc L to see and was very happy with how he was walking. All in all, good news!
Even with the administrivia discussions on the parking pass, aquatic therapy and scheduling the scans and appointments for the next follow up in three months, we were done it half an hour. We were done before we knew it and on our way to IKEA!
Alan splashing in the tub pre-MRI
Wednesday, April 20, 2011
Surgical Follow Ups 4/20
It was a leisurely morning, but a busy day. For once, we were able to have breakfast before heading off to our first appointment - a renal ultrasound at 10 am. Alan got upset as we crossed the skybridge from the hotel to the main hospital building. This was the icky place where he gets poked, starved, and prodded. We promised him no owies today, but he's no sucker - he knew at minimum he'd be stuck sitting around all day long.
As usual, he was pretty happy once the ultrasound started. He even started seeing letters in the ultrasound images (this boy is obsessed with his ABCs!). There was a little confusion as they called us back after we thought they were done. The doctor wanted a look at Alan "live", but it didn't take very long, and we left with the knowledge that she did not see any hydronephrosis. Yay!
Doc L was happy to report that the x-rays and MRI did not show anything. She was very pleased to see Alan so active and to hear how he's been getting around. We had a lot of questions on details of how his leg had been re-attached and what some of the implications of the amputation would be. We wanted to understand the range of motion his leg should have now, and how the loss of hip could affect his body as he grows. The bladder has shifted into the space and Doc L will be keeping an eye on his spine to be sure it doesn't curve. We had not really had the time or attention to give to these questions until now. There has been some swelling of the ankle on his bad leg which had us a little concerned, but Doc L was not worried. It's not unusual after the extensive surgery he's had to have some swelling come and go, but we will continue to monitor it. Otherwise we don't need to come back for another three months. Yay!
Finally, we headed over to the Children's Clinic to see Doc HJ. We finished with Doc L early, so Alan got to play in the Child Life room. He had a great time painting, smooshing all the colours together. He painted four pictures before we got called and was not pleased when he had to stop. Doc HJ was very happy with the results she saw from the ultrasound this morning. As long as Alan doesn't have any strange creatinine levels in his blood test (she wants Doc P to let her know ASAP if that's the case), she won't need to see us for another six months! Yay!
A lot of "Yays!" today! Yay!
Alan had a great time painting!
As usual, he was pretty happy once the ultrasound started. He even started seeing letters in the ultrasound images (this boy is obsessed with his ABCs!). There was a little confusion as they called us back after we thought they were done. The doctor wanted a look at Alan "live", but it didn't take very long, and we left with the knowledge that she did not see any hydronephrosis. Yay!
Doc L was happy to report that the x-rays and MRI did not show anything. She was very pleased to see Alan so active and to hear how he's been getting around. We had a lot of questions on details of how his leg had been re-attached and what some of the implications of the amputation would be. We wanted to understand the range of motion his leg should have now, and how the loss of hip could affect his body as he grows. The bladder has shifted into the space and Doc L will be keeping an eye on his spine to be sure it doesn't curve. We had not really had the time or attention to give to these questions until now. There has been some swelling of the ankle on his bad leg which had us a little concerned, but Doc L was not worried. It's not unusual after the extensive surgery he's had to have some swelling come and go, but we will continue to monitor it. Otherwise we don't need to come back for another three months. Yay!
Finally, we headed over to the Children's Clinic to see Doc HJ. We finished with Doc L early, so Alan got to play in the Child Life room. He had a great time painting, smooshing all the colours together. He painted four pictures before we got called and was not pleased when he had to stop. Doc HJ was very happy with the results she saw from the ultrasound this morning. As long as Alan doesn't have any strange creatinine levels in his blood test (she wants Doc P to let her know ASAP if that's the case), she won't need to see us for another six months! Yay!
A lot of "Yays!" today! Yay!
Alan had a great time painting!
Thursday, April 14, 2011
MRI and Post Spica Cast Five Weeks
Alan was very busy this week - he got to play on the playground at La Cantera on Saturday, had his first PT session on Monday, and now we're in Houston for his second post-op MRI.
Harold had taken Alan and Kevin to the playground and Alan was struggling to get out of the stroller to join his big brother. The La Cantera playground has a solid rubber surface, so this was a good place for him to explore. Under Harold's watchful eye, Alan made almost half a dozen circuits of the playscape, climbing up and going down the slide. It was fun but he voluntarily got back in the stroller afterward - he was tired!
He was not happy to work so hard for the PT - he's used to us complying when he says "All done!". But with some distraction from They Might Be Giants we managed to get Alan to stand bearing some weight on his bad leg. We need to work on flexing his foot until he is standing on it. He actually napped that afternoon!
Here in Houston, we went swimming at the hotel. Since there was no beach entry, Alan had a swim ring and arm floaties. At first he stuck to the steps, then came out into the deeper water clinging very tightly to Judy. Kicking with only his good leg didn't propel him very far or very straight - he looked a little perplexed at first. He was able to move ahead slowly after a while. A good time was had by all!
The big event this week was returning to MD Anderson for another MRI with x-rays. Alan was not happy about lying still for the x-rays, and was even unhappier about the further wait for the MRI, especially since he was still NPO and a woman in the waiting room started eating a cereal bar in front of him.
He was happier once we were in the MRI waiting area. He got a big comfy chair to wait in and the nurse put Happy Feet on for him to watch. The MRI went smoothly and he was soon awake and heading back to the hotel room. After some quiet time to shake the anesthesia off, we went out for some ice cream. We will get the results of the MRI next week when we come out to MD Anderson again for appointments with Doc L and Doc HJ.
A post MRI treat
Harold had taken Alan and Kevin to the playground and Alan was struggling to get out of the stroller to join his big brother. The La Cantera playground has a solid rubber surface, so this was a good place for him to explore. Under Harold's watchful eye, Alan made almost half a dozen circuits of the playscape, climbing up and going down the slide. It was fun but he voluntarily got back in the stroller afterward - he was tired!
He was not happy to work so hard for the PT - he's used to us complying when he says "All done!". But with some distraction from They Might Be Giants we managed to get Alan to stand bearing some weight on his bad leg. We need to work on flexing his foot until he is standing on it. He actually napped that afternoon!
Here in Houston, we went swimming at the hotel. Since there was no beach entry, Alan had a swim ring and arm floaties. At first he stuck to the steps, then came out into the deeper water clinging very tightly to Judy. Kicking with only his good leg didn't propel him very far or very straight - he looked a little perplexed at first. He was able to move ahead slowly after a while. A good time was had by all!
The big event this week was returning to MD Anderson for another MRI with x-rays. Alan was not happy about lying still for the x-rays, and was even unhappier about the further wait for the MRI, especially since he was still NPO and a woman in the waiting room started eating a cereal bar in front of him.
He was happier once we were in the MRI waiting area. He got a big comfy chair to wait in and the nurse put Happy Feet on for him to watch. The MRI went smoothly and he was soon awake and heading back to the hotel room. After some quiet time to shake the anesthesia off, we went out for some ice cream. We will get the results of the MRI next week when we come out to MD Anderson again for appointments with Doc L and Doc HJ.
A post MRI treat
Friday, March 11, 2011
Ultrasound and Pediatric Surgery Follow Up
It was a leisurely morning, since our first appointment wasn't until 1 pm for a renal ultrasound. Alan had slept well last night, just waking a few times to ask for milk or water. In the morning, he was still unhappy about being moved or having his leg manipulated, but was tolerating massage on his leg better. We propped him up with lots of pillows for a while to watch videos and he seemed to handle that well too. We all walked down the street to MD Anderson for lunch, and while we were in the cafeteria, he actually sat up and looked around the hustle and bustle with a lot of interest. The exertion from that must have tired him out, because he fell asleep right in the stroller in the middle of the lunch-time rush.
After lunch we dropped Kevin off at Child Visitation while we took Alan upstairs for his ultrasound. He gave the ultrasound tech the "Bye bye!"/imperious wave combo and cried when we lifted him onto the exam table, but once the ultrasound started, he calmed down and watched the pictures on the screen.
Then we were off to the Children and Adolescent Clinic for the pediatric surgical follow up. We thought this would be with Doc HJ, but because of the delay in getting the ultrasound (since we couldn't do it with the cast on), the surgeon was on her way out of town. We met with her PA Holly instead. The results of the ultrasound were good, showing only mild hydronephrosis and the results from his blood draw earlier in the week showed good creatinine levels. Doc HJ is satisfied with mild to moderate hydronephrosis, but since she had to cut and repair one of Alan's ureters, she wants to continue to monitor his renal function. So we will continue to get renal ultrasounds each time we come to MD Anderson for other scans and office visits until she is completely satisfied.
That was the last of our appointments at MD Anderson until our next follow up with Doc L in six weeks! We left the hospital to drop off the loaner stroller back with the medical supply company (our new stroller is waiting for us in San Antonio) and then returned to the Ronald McDonald House to have an early dinner on the back patio. Alan fell asleep in his stroller again so it was back to our room for another early bedtime. He asked for cookies after his teeth were brushed, which Daddy was not going to give him. When he raised himself up on his elbows to ask for them again, well, that was some hard work that needed to be rewarded! Alan has been sleeping a lot - naps and falling asleep earlier in the evening than he has in months. Being out of the cast must be more comfortable in some way if it's allowing him to sleep more. Hurray for sleep!
Kevin and Alan having a quiet moment this morning
After lunch we dropped Kevin off at Child Visitation while we took Alan upstairs for his ultrasound. He gave the ultrasound tech the "Bye bye!"/imperious wave combo and cried when we lifted him onto the exam table, but once the ultrasound started, he calmed down and watched the pictures on the screen.
Then we were off to the Children and Adolescent Clinic for the pediatric surgical follow up. We thought this would be with Doc HJ, but because of the delay in getting the ultrasound (since we couldn't do it with the cast on), the surgeon was on her way out of town. We met with her PA Holly instead. The results of the ultrasound were good, showing only mild hydronephrosis and the results from his blood draw earlier in the week showed good creatinine levels. Doc HJ is satisfied with mild to moderate hydronephrosis, but since she had to cut and repair one of Alan's ureters, she wants to continue to monitor his renal function. So we will continue to get renal ultrasounds each time we come to MD Anderson for other scans and office visits until she is completely satisfied.
That was the last of our appointments at MD Anderson until our next follow up with Doc L in six weeks! We left the hospital to drop off the loaner stroller back with the medical supply company (our new stroller is waiting for us in San Antonio) and then returned to the Ronald McDonald House to have an early dinner on the back patio. Alan fell asleep in his stroller again so it was back to our room for another early bedtime. He asked for cookies after his teeth were brushed, which Daddy was not going to give him. When he raised himself up on his elbows to ask for them again, well, that was some hard work that needed to be rewarded! Alan has been sleeping a lot - naps and falling asleep earlier in the evening than he has in months. Being out of the cast must be more comfortable in some way if it's allowing him to sleep more. Hurray for sleep!
Kevin and Alan having a quiet moment this morning
Thursday, March 10, 2011
Spica Cast Week Ten and it's off!
It was a very early morning, since we needed to check in to surgery at 5:15 am. Even so, there was a long line! All the first surgeries of the day checking in at the same time I guess. Alan was pretty content during the pre-op period, watching videos on the PSP, until someone came in his room. Then it was "Bye bye!" and the imperious wave to dismiss them. Everyone thought it was so cute.
They rolled him into the OR around 7 am, and one of us was allowed into the PACU to sit with him by 7:40. He woke up pretty quickly and started saying "See you later!" in addition to "Bye bye". Not quite so fast! He sat up a bit and had some juice while we waited to see Doc L and Kristi.
Originally, they were going to re-pad the cast and give it back to us as a bit of support for Alan to sit up in while he got used to be free again. Doc L had warned us that kids that have been in casts for a while will take some time to be comfortable with it's support when it's removed. Getting the cast back in a clamshell mode was supposed to be a bit of a security blanket/support for him. However, Alan had done such a number on the cast that it was irrecoverable. Kristi suggested propping him up with pillows and placing then around him like a fortress for support until he was comfortable on his own.
When it came time for us to get dressed and leave, Alan started crying and wailing when I tried to put a pair of shorts on him. I was worried at first, wondering if the pain he was expressing was a normal part of the recovery from the hemipevectomy or the cast. Kristi said it was a normal reaction to the loss of support from the cast we had discussed earlier. The pain from the surgery should be past by now but we still had to deal with the discomfort from the cast. Imagine how it feels when your foot falls asleep and then you have to rub the circulation back to normal in it - now multiply that by a leg and a half and months. That's what Alan is going through right now. The nerves and muscles have also gotten sluggish from lack of use and stimulation. It will take time for them to get back to normal.
Our boy is so stubborn and active that even knowing this it was quite a shock to us how sad and scared he was to move. He cried every time we moved him in and out of the stroller or car seat, or had to manipulate his legs to change him. Time, massage, and a little Motrin is all we can do right now.
Otherwise, Doc L says there are no restrictions on Alan's activities. She wants him to wear the hip and foot braces he wore before the cast was put on as much as possible to provide some support and keep the foot from dropping (since they had to release his tendon in the surgery). We left those at home in San Antonio, but we'll get them on him as soon as we get home. In fact, if he wants a particular toy, we should leave him to go after it rather than get it for him. Tough love! It's going to be hard, but Alan is a tough little man.
We were back from the hospital by mid-morning, in plenty of time for lunch - in Alan's case, a yummy frosted cupcake!
After lunch we headed out to the Rodeo for Alan to get out of the hospital for a while. All that fresh air and Alan had a nap for a while.
They rolled him into the OR around 7 am, and one of us was allowed into the PACU to sit with him by 7:40. He woke up pretty quickly and started saying "See you later!" in addition to "Bye bye". Not quite so fast! He sat up a bit and had some juice while we waited to see Doc L and Kristi.
Originally, they were going to re-pad the cast and give it back to us as a bit of support for Alan to sit up in while he got used to be free again. Doc L had warned us that kids that have been in casts for a while will take some time to be comfortable with it's support when it's removed. Getting the cast back in a clamshell mode was supposed to be a bit of a security blanket/support for him. However, Alan had done such a number on the cast that it was irrecoverable. Kristi suggested propping him up with pillows and placing then around him like a fortress for support until he was comfortable on his own.
When it came time for us to get dressed and leave, Alan started crying and wailing when I tried to put a pair of shorts on him. I was worried at first, wondering if the pain he was expressing was a normal part of the recovery from the hemipevectomy or the cast. Kristi said it was a normal reaction to the loss of support from the cast we had discussed earlier. The pain from the surgery should be past by now but we still had to deal with the discomfort from the cast. Imagine how it feels when your foot falls asleep and then you have to rub the circulation back to normal in it - now multiply that by a leg and a half and months. That's what Alan is going through right now. The nerves and muscles have also gotten sluggish from lack of use and stimulation. It will take time for them to get back to normal.
Our boy is so stubborn and active that even knowing this it was quite a shock to us how sad and scared he was to move. He cried every time we moved him in and out of the stroller or car seat, or had to manipulate his legs to change him. Time, massage, and a little Motrin is all we can do right now.
Otherwise, Doc L says there are no restrictions on Alan's activities. She wants him to wear the hip and foot braces he wore before the cast was put on as much as possible to provide some support and keep the foot from dropping (since they had to release his tendon in the surgery). We left those at home in San Antonio, but we'll get them on him as soon as we get home. In fact, if he wants a particular toy, we should leave him to go after it rather than get it for him. Tough love! It's going to be hard, but Alan is a tough little man.
We were back from the hospital by mid-morning, in plenty of time for lunch - in Alan's case, a yummy frosted cupcake!
After lunch we headed out to the Rodeo for Alan to get out of the hospital for a while. All that fresh air and Alan had a nap for a while.
Wednesday, March 9, 2011
CT and a consultation with Doc L
Alan had to get an IV today rather than have his port accessed, since images are better when the IV contrast does not go through the port. We went to the Children's Clinic to get the IV line, where Alan glared at the nurse while Mommy tried to distract him with a new book with a great big lion on the cover. No such luck, as he kept turning to look at the nurse holding on to his right arm. He cooperated though so we made it up to Diagnostic Imaging.
There was a bit of a delay while we waited for an anesthesiologist. Alan isn't cooperative enough to drink the oral contrast yet - three ounces every half hour three times over an hour and a half, and if he doesn't drink it all or throws it up the CT is delayed. We don't want to risk any delays to removing his cast, so that means a feeding tube while he's sedated. Alan has been cooperative with everything else, even though he keeps telling every medical professional we come across "Bye bye!". Perhaps the oral contrast is something we can try next time we do scans.
By the time we saw Kristi, Doc L's PA, they had already had a chance to see the results of all the testing. So far so good! We are taking the cast off tomorrow morning (5:15 am show time, ouch!) and will follow up with another MRI and appointment with Doc L in six weeks. There was a thickening area along the Obturator muscle, which is probably scar tissue from where Doc L had to remove the Obturator nerve. To be safe though we will have a follow-up scan in six weeks rather than three months. After all, we had clear scans three months after Alan's tumor resection in January 2010, and were surprised by the tumor coming back before the next three month scan. This shortened time frame makes us feel a lot better.
While we were waiting to see Doc L, we got a call from the Ronald McDonald House - a room was opening up! Hurray! The hotel has been fine, but the RMH will be more comfortable and convenient. It was also nice to see some friends we had made back in December and meet some new families - impromptu Mom's Support Party!
Alan reads his new book at the RMH
Alan writes his name
There was a bit of a delay while we waited for an anesthesiologist. Alan isn't cooperative enough to drink the oral contrast yet - three ounces every half hour three times over an hour and a half, and if he doesn't drink it all or throws it up the CT is delayed. We don't want to risk any delays to removing his cast, so that means a feeding tube while he's sedated. Alan has been cooperative with everything else, even though he keeps telling every medical professional we come across "Bye bye!". Perhaps the oral contrast is something we can try next time we do scans.
By the time we saw Kristi, Doc L's PA, they had already had a chance to see the results of all the testing. So far so good! We are taking the cast off tomorrow morning (5:15 am show time, ouch!) and will follow up with another MRI and appointment with Doc L in six weeks. There was a thickening area along the Obturator muscle, which is probably scar tissue from where Doc L had to remove the Obturator nerve. To be safe though we will have a follow-up scan in six weeks rather than three months. After all, we had clear scans three months after Alan's tumor resection in January 2010, and were surprised by the tumor coming back before the next three month scan. This shortened time frame makes us feel a lot better.
While we were waiting to see Doc L, we got a call from the Ronald McDonald House - a room was opening up! Hurray! The hotel has been fine, but the RMH will be more comfortable and convenient. It was also nice to see some friends we had made back in December and meet some new families - impromptu Mom's Support Party!
Alan reads his new book at the RMH
Alan writes his name
Tuesday, March 8, 2011
X-rays and MRI
It's three months after the surgery and two months with the cast, so we're back at MD Anderson for scans. We were at the hospital bright and early this morning for the blood tests, X-rays and an MRI. Alan was not happy to be here and refused the stuffed animal that the X-ray tech offered him. There was a little confusion when their records showed him as 25 kilos rather than 25 pounds (rather an important distinction for the anesthesiologist) but we pressed on and were done by lunch.
After a quick meal, we went to the Children's Museum of Houston for the afternoon. We are unable to stay at the Ronald McDonald House on this trip, so we wanted to get the boys out of the hotel room where they could have some fun. After a quiet start (shaking off the effects of the anesthesia) Alan ended up quite active in the TotSpot.
We will be back tomorrow for the CT and consultation with Doc L.
Reach HIGH to put the balls away
Moving along the bridge (see the video below)
Cars go WHOOSH!
[Video of Alan cruising along]
After a quick meal, we went to the Children's Museum of Houston for the afternoon. We are unable to stay at the Ronald McDonald House on this trip, so we wanted to get the boys out of the hotel room where they could have some fun. After a quiet start (shaking off the effects of the anesthesia) Alan ended up quite active in the TotSpot.
We will be back tomorrow for the CT and consultation with Doc L.
Reach HIGH to put the balls away
Moving along the bridge (see the video below)
Cars go WHOOSH!
[Video of Alan cruising along]
Thursday, December 2, 2010
Pre-op MRI
Another cranky morning as Alan was NPO for his pre-op MRI. We had to go to Infusion Therapy to access his port for the first time. From now on we can go to the Pediatric Clinic. While we were waiting for the MRI Alan watched "Happy Feet". He loved the dancing penguins, and it was funny to see his gas mask for anesthesia had a penguin on it.
The MRI took an hour and we were soon sitting with him in recovery. We ended up taking a family nap, then it was up for some juice and to get dressed. Doc L will call us with the results tomorrow. There was just a quick stop at the Image Library to order a copy of this week's scans to take back to the docs in San Antonio.
Back at the Ronald McDonald House, Alan had a great time on the playground, then sat reading with Mommy for a while. He enjoyed a mariachi band that had come to play for us during dinner and danced to their music. We finished watching Happy Feet to which he enthusiastically danced some more. It's a bittersweet thing to watch but he's been having so much fun.
We will head home in the morning to spend the weekend with big brother Kevin and Grandma. We return to Houston on Tuesday for Alan to be admitted to the hospital on Wednesday morning for surgery prep.
The MRI took an hour and we were soon sitting with him in recovery. We ended up taking a family nap, then it was up for some juice and to get dressed. Doc L will call us with the results tomorrow. There was just a quick stop at the Image Library to order a copy of this week's scans to take back to the docs in San Antonio.
Back at the Ronald McDonald House, Alan had a great time on the playground, then sat reading with Mommy for a while. He enjoyed a mariachi band that had come to play for us during dinner and danced to their music. We finished watching Happy Feet to which he enthusiastically danced some more. It's a bittersweet thing to watch but he's been having so much fun.
We will head home in the morning to spend the weekend with big brother Kevin and Grandma. We return to Houston on Tuesday for Alan to be admitted to the hospital on Wednesday morning for surgery prep.
Tuesday, November 30, 2010
Pre-op CT and X-rays
It was a long day for Alan since he had to start it off NPO for the sedation needed to do his scans. We went on a bit of a boondoggle, as we were directed in several directions to get a peripheral IV line (apparently MD Anderson doesn't do CT scans with a port accessed) and then there was a little confusion whether the X-rays were going to be done before or after the CT and when they would do a blood draw for his CBC.
Ultimately they did the blood draw in the Pedi clinic when they inserted the IV line in his arm, the X-rays came first because they had to be done before he got the contrast for the CT and then we had to decide what to do about the contrast. Alan has had IV contrast for scans many times before, but this would be the first time he would be getting oral contrast too. This would require him to drink 8 ounces of juice every half hour three times - good luck with that! After some discussion with the anesthesiologist and the anesthesia nurse, we decided to sedate him and administer the oral contrast with an oral tube they would insert once he was out. While he might be desperate enough to drink the first dose of juice, he's fussy enough there was no way we could guarantee he would drink all three doses in the time allotted. If that happened, they would need to cancel the CT and reschedule and with surgery next week we had no time to mess with it. This meant instead of being out for just the 12 minutes of the actual scan, Alan would be out for the hour and a half of contrast plus the scan plus transfers - call it two hours.
As usual Alan handled the anesthesia well and shook it off quite quickly. He pushed aside the water we offered and went right to his chocolate milk - he guzzled a whole 10-ounce bottle in one long draw, never lifting his lips from the straw until he was done. He moved on to animal crackers as we did the paperwork to have him discharged.
After verifying what we need to do and where for the next couple of days, we walked back to Ronald McDonald House. The weather had cleared and it was a beautiful afternoon, but it was a bit windy and chilly to play outside. After a snack (some yummy cake for the RMH resident doggie Mogie's birthday), Alan decided it was time to work out. He climbed the stairs to the third floor then rode the elevator down - four times! He was obviously feeling better.
Tomorrow is an easier day - just two office visits with Doc L and another surgeon. We have the morning off, so if the nice weather holds we may check out the zoo!
Ultimately they did the blood draw in the Pedi clinic when they inserted the IV line in his arm, the X-rays came first because they had to be done before he got the contrast for the CT and then we had to decide what to do about the contrast. Alan has had IV contrast for scans many times before, but this would be the first time he would be getting oral contrast too. This would require him to drink 8 ounces of juice every half hour three times - good luck with that! After some discussion with the anesthesiologist and the anesthesia nurse, we decided to sedate him and administer the oral contrast with an oral tube they would insert once he was out. While he might be desperate enough to drink the first dose of juice, he's fussy enough there was no way we could guarantee he would drink all three doses in the time allotted. If that happened, they would need to cancel the CT and reschedule and with surgery next week we had no time to mess with it. This meant instead of being out for just the 12 minutes of the actual scan, Alan would be out for the hour and a half of contrast plus the scan plus transfers - call it two hours.
As usual Alan handled the anesthesia well and shook it off quite quickly. He pushed aside the water we offered and went right to his chocolate milk - he guzzled a whole 10-ounce bottle in one long draw, never lifting his lips from the straw until he was done. He moved on to animal crackers as we did the paperwork to have him discharged.
After verifying what we need to do and where for the next couple of days, we walked back to Ronald McDonald House. The weather had cleared and it was a beautiful afternoon, but it was a bit windy and chilly to play outside. After a snack (some yummy cake for the RMH resident doggie Mogie's birthday), Alan decided it was time to work out. He climbed the stairs to the third floor then rode the elevator down - four times! He was obviously feeling better.
Tomorrow is an easier day - just two office visits with Doc L and another surgeon. We have the morning off, so if the nice weather holds we may check out the zoo!
Friday, November 26, 2010
Transfusion
Because of the Thanksgiving holiday, we came to the hospital this afternoon for Alan's blood transfusion. We had a room in the back in the BMT section with lots of windows looking out onto the main road in front of the hospital. There was quite a wait for the blood to arrive, so Alan was free to run around the room and play for a while, then it was time to sit on the bed watching "Cars" through the three hour transfusion.
He has been eating rather well, downing an impressive number of crackers for Thanksgiving. Today he ate most of the bun from a hamburger and polished off a bag of yogurt melts. This is a wonderful trend we hope continues!
After the transfusion, the CBC showed a white count of 8900 - no more Neupogen! It was a long, long day but it was nice to get home.
He has been eating rather well, downing an impressive number of crackers for Thanksgiving. Today he ate most of the bun from a hamburger and polished off a bag of yogurt melts. This is a wonderful trend we hope continues!
After the transfusion, the CBC showed a white count of 8900 - no more Neupogen! It was a long, long day but it was nice to get home.
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