Tuesday, March 31, 2009
Update
Kyle had another x-ray this morning and they say it looks like he's developing pneumonia. They've started him on steroids for his lungs, Lasix (the diuretic medication - not the vision correction surgery) and also milrinone (a heart medication) to help with the extra workload his heart is dealing with right now. His heart rate is hanging in the 190's. His respiratory rate is hangingg around the 90's but his O2 sats are only at 92%. He's still retracting pretty bad and the continuous Albuterol treatment doesn't seem to be helping so they're putting him on a C-PAP mask for oxygen. They've been taking all kinds of bloodwork and such. He's not a happy camper.
Monday, March 30, 2009
Kyle in the hospital again
Kyle's in All Children's Hospital again. Last night he started having coughing fits so this morning I set up an appointment with the pediatrician. He was seeming okay until about the time I got to my parents' house to drop off the girls. He was breathing really hard and fast and was lethargic. I went from there to the pediatrician's office and his breathing was getting worse as I walked in with him. The pediatrician ordered a breathing treatment for him and before the breathing treatment was hardly started, she noticed that he was getting worse very quickly. She called for an ambulance to come get him and by the time the paramedics got there, his skin was pale and bluish and he was retracting with his breathing (see video below). They thought for a moment that he might code! But they got him on oxygen and he started to get his color back. In the ER, they started an IV (5th time was a charm... until he popped it out... then 8th or 9th stuck), took a chest x-ray, did a couple of breathing treatments and then came the echo... As many of you know, I was scheduled for an interview for a position as a pediatric echo tech (my dream job) with Kyle's cardiology group last Tuesday but they had to reschedule. At this interview, I was to meet the group's director Dr Martinez and give a demonstration of my skills scanning. Guess which doctor came down to watch Kyle's echo! I wasn't sure what to say so I hung back. When the doctor mentioned something about the new machines, I piped up and said "Yeah. Last time Kyle had an echo here, they were using the Philips machine". Dr Martinez turned to me and said, "What do you do for a living?" since most people don't notice the type of machine used for the echo. So I told him, "Actually, I'm waiting to hear back from Stacy about rescheduling an interview with you!" He laughed and said, "That was you?!" He said that everything was crazy last week but he would see if they could arrange to interview me around Kyle's discharge so that I could just go across the street! Anyway, the x-ray and echo both came back normal (for Kyle, anyway) so they think it's just something viral but they're having to do continuous albuterol. Right now, he's doing okay except for being irritable and uncomfortable. Meanwhile, I'm a little irritable and uncomfortable myself. I have a sunburn (in patches because I tried to do spray sunscreen by myself) and a toothache (wisdom is sooo overrated in teeth!). General opinion seems to be that he'll need to stay a couple of days. Who wants to start a pool for when he'll be discharged - knowing that my favorite All Children's cafeteria food (Chicken Tampico) is on the menu for Wednesday? Last time, chicken tampico was set for Wednesday and Kyle went home Tuesday. Another time, it was set for Saturday and Kyle was discharged Friday.... Don't laugh! That chicken tampico is awesome!
This is what I mean by "retracting". This was taken when he was on continuous Albuterol.
This is what I mean by "retracting". This was taken when he was on continuous Albuterol.
Wednesday, March 4, 2009
Surgery #6
Kyle had his sixth surgery on Wednesday, February 25th (last week). He had a tonsillectomy, adenoidectomy, and ear tubes put in, all in one surgery.
His previous surgeries include:
Bilateral Laser Photocoagulation (laser eye surgery)- 10/24/06
Gastronomy Tube Placement - 1/3/07
Bilateral Inguinal Hernia Repair - 1/11/07
Valvuloplasty - 3/2/07
Nissen Fundoplication - 6/13/07
(Notice all of those surgeries were before he was a year old!)
Normally, this surgery is done outpatient but because of his cardiac history, they had him scheduled for 24-hour observation (his ninth admittance to All Children's Hospital). Because of his lung history, 24-hour observation became a week. The normal post-op swelling from the surgery made it harder for his already-damaged lungs to get the oxygen needed. His oxygen saturation levels kept dropping below 90% (which is bad). After the first few days, the levels only dropped while he was asleep (which is normal, to a lesser degree) and finally Monday night he went through the entire night without requiring oxygen and they discharged us early Tuesday morning.
He's doing well now and we hope that when the soreness from the surgery goes away, he'll be more receptive to eating. When we met with the otolaryngologist (ear, nose, and throat specialist) at the end of January, she remarked that Kyle's tonsils were very large and may have contributed to his aversion to eating since they would increase his gag reflex. As if to confirm those suspicions, the next day at PPEC (the medical daycare he's been attending), they had to perform the heimlich maneuver on him for a cherio.
His previous surgeries include:
Bilateral Laser Photocoagulation (laser eye surgery)- 10/24/06
Gastronomy Tube Placement - 1/3/07
Bilateral Inguinal Hernia Repair - 1/11/07
Valvuloplasty - 3/2/07
Nissen Fundoplication - 6/13/07
(Notice all of those surgeries were before he was a year old!)
Normally, this surgery is done outpatient but because of his cardiac history, they had him scheduled for 24-hour observation (his ninth admittance to All Children's Hospital). Because of his lung history, 24-hour observation became a week. The normal post-op swelling from the surgery made it harder for his already-damaged lungs to get the oxygen needed. His oxygen saturation levels kept dropping below 90% (which is bad). After the first few days, the levels only dropped while he was asleep (which is normal, to a lesser degree) and finally Monday night he went through the entire night without requiring oxygen and they discharged us early Tuesday morning.
He's doing well now and we hope that when the soreness from the surgery goes away, he'll be more receptive to eating. When we met with the otolaryngologist (ear, nose, and throat specialist) at the end of January, she remarked that Kyle's tonsils were very large and may have contributed to his aversion to eating since they would increase his gag reflex. As if to confirm those suspicions, the next day at PPEC (the medical daycare he's been attending), they had to perform the heimlich maneuver on him for a cherio.
Saturday, January 10, 2009
Kyle back in the hospital... again
Sunday night, Kyle was fussy with a fever and Audrey had crusted over eyes. So Monday afternoon, my mom and I packed up the kids and took them to the pediatrician (not their normal pediatrician but the other doctor in that office). He confirmed my suspicion that Kyle had an ear infection and also diagnosed Audrey with pink-eye. He prescribed antibiotics for Kyle and eye drops for Audrey.
By yesterday, Audrey was showing no signs of the pink-eye anymore but Thursday night Kyle had signs of pink-eye, another fever and he was acting fussy like his ear was still hurting. So Friday afternoon, I took the kids to the pediatrician again - this time, just for Kyle.
The pediatrician prescribed a different antibiotic for Kyle since his ear infection was not clearing up and was now combined with pink-eye. He also prescribed Kyle the eye drops. But he commented on Kyle's breathing which was slightly more rapid than normal. He said that if Kyle's breath rate increased or seemed any more labored to bring him into All Children's to be on the safe side.
I wasn't too concerned since Kyle tends to breathe somewhat rapid and coarse normally but by the time we picked up the prescriptions at the pharmacy and got home, he was asleep in the car and breathing hard and fast, enough to worry me. So I called Chris and asked him to come home early. I took Kyle's temperature and it was 102.7F so I gave him some Motrin with his antibiotic and waited for Chris.
By the time Chris got home to stay with the girls and I got Kyle to the emergency room, he was miserable and I was very concerned. Only two hours after taking Motrin, his temperature was 40C (104F). They gave him a little more Motrin and a nebulizer treatment with Albuterol and a little while later, they started the tests and labs. They took a chest x-ray, got a urine sample (by catheter), tested for RSV (which requires a flush and a suction tube up the nose), took blood work and put in a port for an IV.
The tests came back negative for RSV and flu. They said it looks like it's just a virus. They put him on oxygen, gave him a steroid and began plans to admit him with frequent nebulizer treatments and a course of steroids.
He was brought to his room around midnight. Today, he's been asleep for most of the day but when Chris got there and I left for home, he was up and playing on only a little bit of oxygen. They usually wait until a child is off oxygen for 24 hours, maintaining a good oxygen saturation level, before they discharge them.
He's already seen lots of familiar faces - the nurse, Lin, who took care of him when he had RSV last February, Dr Everett and Dr Berlin, who've each handled his care before and even a couple of respiratory therapists and NICU nurses who were just passing by but recognized his name on the door.
Everyone has said how big he's gotten, which is a little funny considering how tiny he looks on the bed. (They put him in a regular bed this time instead of a crib.
)
Hopefully, he will be back home again and I can start the counter again for how many days he's been out of the hospital. He was up to 27 or 28.
By yesterday, Audrey was showing no signs of the pink-eye anymore but Thursday night Kyle had signs of pink-eye, another fever and he was acting fussy like his ear was still hurting. So Friday afternoon, I took the kids to the pediatrician again - this time, just for Kyle.
The pediatrician prescribed a different antibiotic for Kyle since his ear infection was not clearing up and was now combined with pink-eye. He also prescribed Kyle the eye drops. But he commented on Kyle's breathing which was slightly more rapid than normal. He said that if Kyle's breath rate increased or seemed any more labored to bring him into All Children's to be on the safe side.
I wasn't too concerned since Kyle tends to breathe somewhat rapid and coarse normally but by the time we picked up the prescriptions at the pharmacy and got home, he was asleep in the car and breathing hard and fast, enough to worry me. So I called Chris and asked him to come home early. I took Kyle's temperature and it was 102.7F so I gave him some Motrin with his antibiotic and waited for Chris.
By the time Chris got home to stay with the girls and I got Kyle to the emergency room, he was miserable and I was very concerned. Only two hours after taking Motrin, his temperature was 40C (104F). They gave him a little more Motrin and a nebulizer treatment with Albuterol and a little while later, they started the tests and labs. They took a chest x-ray, got a urine sample (by catheter), tested for RSV (which requires a flush and a suction tube up the nose), took blood work and put in a port for an IV.
The tests came back negative for RSV and flu. They said it looks like it's just a virus. They put him on oxygen, gave him a steroid and began plans to admit him with frequent nebulizer treatments and a course of steroids.
He was brought to his room around midnight. Today, he's been asleep for most of the day but when Chris got there and I left for home, he was up and playing on only a little bit of oxygen. They usually wait until a child is off oxygen for 24 hours, maintaining a good oxygen saturation level, before they discharge them.
He's already seen lots of familiar faces - the nurse, Lin, who took care of him when he had RSV last February, Dr Everett and Dr Berlin, who've each handled his care before and even a couple of respiratory therapists and NICU nurses who were just passing by but recognized his name on the door.
Everyone has said how big he's gotten, which is a little funny considering how tiny he looks on the bed. (They put him in a regular bed this time instead of a crib.
)
Hopefully, he will be back home again and I can start the counter again for how many days he's been out of the hospital. He was up to 27 or 28.
Thursday, December 18, 2008
PPEC
Before his discharge, the caseworker assigned to Kyle gave me some information about the PPEC (Prescribed Pediatric Extended Care) medical daycare program in Clearwater. Previous caseworkers have mentioned the program to us before but I looked into it a little more this time.
PPEC is a division of Pediatric Health Choice (the medical equipment provider that provides Kyle's feeding pump and equipment). It is a daycare center for children requiring special medical attention preventing them from attending a normal daycare. Kyle qualifies because of his developmental delays and reliance on the feeding tube.
PPEC is 100% covered by medicaid and many other insurances. There is no cost to the family. I was especially surprised at this considering that they are able to accomodate even newborns.
They provide care Monday-Saturday up to 12 hours a day. There is no minimum number of hours. Kyle could attend a week full-time and then the next week not attend at all. He could arrive at 6:30 AM one day and 4:00 PM the next. The schedule is as flexible as we need it to be. The school schedule is very structured, though. They have scheduled nap, lunch, outdoor play and snack times just like a regular daycare.
Their staff consists of all medical professionals. The teachers are all CNAs, LPNs, RNs, etc. They are staffed with therapists for occupational, speech, physical and feeding therapies. Which means that Kyle would be able to get therapy every day without leaving the daycare. They have cribs or toddler beds for each child where normal daycares only have cots. They have the special equipment needed as well - feeding pumps, IV pumps, nebulizers, etc.
Their staff is free from infection and do not come in if they have any signs of illness. If a child has a fever, they are not turned away. They are given medications as needed and isolated from the other children. They even have a special isolation room for highly contagious diseases such as pink eye or chickenpox with a specialized ventillation system and a separate bathroom.
They also can provide transportation to and from school for families without transportation of their own or when there are scheduling conflicts affecting transportation (i.e., the parent works past closing time and the child needs to be transported to a family member's house).
The center is located just west of US19N on Drew Street, so Chris actually passes the center every day on his way to and from work so it works out perfectly. We've discussed starting Kyle at PPEC starting the first Monday in January (1/5/09).
PPEC is a division of Pediatric Health Choice (the medical equipment provider that provides Kyle's feeding pump and equipment). It is a daycare center for children requiring special medical attention preventing them from attending a normal daycare. Kyle qualifies because of his developmental delays and reliance on the feeding tube.
PPEC is 100% covered by medicaid and many other insurances. There is no cost to the family. I was especially surprised at this considering that they are able to accomodate even newborns.
They provide care Monday-Saturday up to 12 hours a day. There is no minimum number of hours. Kyle could attend a week full-time and then the next week not attend at all. He could arrive at 6:30 AM one day and 4:00 PM the next. The schedule is as flexible as we need it to be. The school schedule is very structured, though. They have scheduled nap, lunch, outdoor play and snack times just like a regular daycare.
Their staff consists of all medical professionals. The teachers are all CNAs, LPNs, RNs, etc. They are staffed with therapists for occupational, speech, physical and feeding therapies. Which means that Kyle would be able to get therapy every day without leaving the daycare. They have cribs or toddler beds for each child where normal daycares only have cots. They have the special equipment needed as well - feeding pumps, IV pumps, nebulizers, etc.
Their staff is free from infection and do not come in if they have any signs of illness. If a child has a fever, they are not turned away. They are given medications as needed and isolated from the other children. They even have a special isolation room for highly contagious diseases such as pink eye or chickenpox with a specialized ventillation system and a separate bathroom.
They also can provide transportation to and from school for families without transportation of their own or when there are scheduling conflicts affecting transportation (i.e., the parent works past closing time and the child needs to be transported to a family member's house).
The center is located just west of US19N on Drew Street, so Chris actually passes the center every day on his way to and from work so it works out perfectly. We've discussed starting Kyle at PPEC starting the first Monday in January (1/5/09).
All Better
Kyle came home Saturday afternoon after a week in the hospital. In addition to the pneumonia, they discovered that he had RSV again, which is probably what caused the pneumonia. They treated him with steroids, antibiotics, IV fluids and breathing treatments. They would have discharged him earlier except that his O2 sats (blood oxygen saturation levels) kept dropping below 90% while he was sleeping unless he was on oxygen. O2 sat levels should normally be as close to 100% as possible but at least over 92%.
During his stay, Kyle got visits from some of his favorite NICU nurses and respiratory therapists and made friends with a couple of new nurses. He had Scott and Melissa as nurses for most of the week. He had three roomates come and go while he was there, too. One of them was a little baby boy and Kyle had fun talking across the room to him. When the baby was replaced with a 16 year old boy, Kyle kept asking where the baby went.
I was able to share some of my knowledge from being an All Children's veteran with the other parents. Little tricks like where the silence buttons are on each monitor and pump (making sure they knew to inform the nurse whenever the alarms go off, though), or which channel is the All Children's movie channel (44), or where to park, or how to avoid parking fees in the Bayfront garage (leave after 9pm - no charge), etc.
But Kyle's home now and has been almost a week. He's feeling much better and back to his old self. He's a little more talkative and independent.
During his stay, Kyle got visits from some of his favorite NICU nurses and respiratory therapists and made friends with a couple of new nurses. He had Scott and Melissa as nurses for most of the week. He had three roomates come and go while he was there, too. One of them was a little baby boy and Kyle had fun talking across the room to him. When the baby was replaced with a 16 year old boy, Kyle kept asking where the baby went.
I was able to share some of my knowledge from being an All Children's veteran with the other parents. Little tricks like where the silence buttons are on each monitor and pump (making sure they knew to inform the nurse whenever the alarms go off, though), or which channel is the All Children's movie channel (44), or where to park, or how to avoid parking fees in the Bayfront garage (leave after 9pm - no charge), etc.
But Kyle's home now and has been almost a week. He's feeling much better and back to his old self. He's a little more talkative and independent.
Wednesday, December 10, 2008
Kyle at All Children's Hospital again
Kyle was admitted Friday night with pneumonia. He's still in the hospital. I will try to find time to update more.
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