Thursday, January 13, 2011
Medical Information Cheat Sheet
Not long after Kyle came home from NICU, I did up a sheet with all his medical information and I have updated it and modified it over the last 4 years. Any time Kyle needs to go to the hospital or a new doctor, I bring the sheet and have them copy it. It's one sheet with all the answers to the questions usually asked by doctors - what medications he's on, hospitalizations, surgeries, vaccinations, etc. I can't always remember the dates for all of his surgeries or vaccinations and I might forget to mention a medication he only takes when needed, but the sheet has it all listed for convenience. For years my mom has told me I should make a service of doing these for other parents of children with extensive medical histories, so here it is... If you (or someone you know) could use a sheet like this, let me know and give me an e-mail address and I'll email the Microsoft Word document minus the information so all you have to do is fill in the blanks. I could also customize it, but it would require a lot of medical history and some people are not comfortable sharing that with strangers. I usually print this out on one 8 1/2" x 11" sheet of paper front and back and keep it in a plastic sleeve to keep it from getting messed up.
Sunday, August 22, 2010
Happy Mealtimes
Happy Mealtimes is an month-long intensive feeding therapy program for children who are unable to transition to eating normally with other methods. Kyle had to meet certain criteria to even be considered for this program including a referal from a medical doctor stating the need for the program, having completed outpatient feeding therapy without success, the OPMS (swallow study) showing that he had no medical condition preventing him from taking food by mouth safely, and even being on a very specific schedule for when he receives his tube feedings during the day. The application for the program required video of attempts to feed Kyle both in the therapy setting and at home and a 72 hour log of food intake. Once we turned in the application, it took a while for them to review it and determine his eligilbility for the program. As they are currently only able to provide this program for one child at a time and it is a month-long program, the waiting list was very long and they first gave us a tentative start date of September of 2011! We were very excited when we got the word that there was an earlier opening in the program for this year!
Monday, August 16th was Kyle's first day in the program. We arrived at the Sexton building (located between the old Physicians Office Building and the new parking garage) at 8:00 am for his initial assessment. We met with Allison and Cara, the feeding therapists for the program, on the fourth floor. To get an idea of how an attempt at feeding normally went, they had me go in therapy room with him and try to feed him while they watched from a smaller adjoining room through a mirror/window. Kyle didn't cooperate, as usual. When time was up, Allison and Cara came back in, gave some feedback and what to expect during the program. I was given a welcome packet with information about the area, a map of downtown St Petersburg, a map of the hospital, information on Ronald McDonald House, tickets to Great Explorations museum, a coffee perks card for the cafe downstairs and an itenerary for the next four weeks.
Next, we went downstairs for him to be weighed and measured by Sandra, the dietician and to discuss his diet. He will be weighed and measured every Monday to compare to to previous week and to monitor any weight gain/loss during the program.
At 10:30 am, we went back to the fourth floor for a snack-time feeding session. This time, I watched from the observation room while Allison fed him. She started in slow, giving him toys to choose from ("Do you want to play with this toy or this toy?"). She asked him to show her ah-mmm's with a spoon, where he opened his mouth wide for the spoon, then closed his lips and pulled it out with nothing on it. She progressed gradually to dipping just the tip of the spoon in yogurt and kissing the spoons or even doing ah-mmm's. Each time, he'd choose from two toys which he wanted beforehand and he'd be rewarded with the chosen toy. She also used a juice box and gave him choices like, "Do you want 1 sip or 3 sips?" and he'd drink the chosen amount of sips. Each time he tried to distract or refuse, at the first sign of resistance she'd distract him with choosing between toys and he'd seem to forget that he was about to refuse.
After the session, it was time to head downstairs to the third floor to meet up with the occupational therapist, Roseann, and go to the occupational therapy room down on the second floor. Occupational therapy doesn't work on trying to get Kyle to actually eat. They do more to do with his aversion to certain textures or having things in his mouth at all. So they have him try to bite foods like fruit loops in half but he doesn't have to swallow the peices. He can just take them out. Or they might have him fingerpainting with pudding on the table but not eating the pudding. That type of thing. He did not like this first day of occupational therapy. He cried and screamed at Roseann quite a bit during his hour session.
After occupational therapy, we headed back upstairs for the lunch feeding session with Allison. It went smoothly and he gave no signs of resistance.
After the Noon feeding session, we had 2 1/2 hours to kill before the next session. I was so tired already. I had worked my usual 11 am - 11 pm shift the night before and had been up early to get all the last minute things packed up and get out of the house by 7 am. We went to get some food for me and checked out the Family Resource Center in the OCC (Outpatient Care Center). In the Family Resource Center, they have a book shelf full of books donated by employees that are free for patients/families that want them. We grabbed a few books that Kyle liked as well as some books that he thought big sister Hannah would like.
At 3 pm, Kyle had his last session for the day, a snack. He did so well. He acts like it's no big deal to drink the Boost Kids Essentials instead of having it through the tube and he even took spoonfuls of pureed food like it was no big deal!
During the week, we had arranged to stay at Chris's parents' house so that we don't have to do so much driving and we don't have to drive so far in the morning rush-hour traffic. So Kyle and I went to their house and both fell asleep on the couch. It had been a very busy day. I woke up a little later but Kyle was out like a light and we weren't able to try dinner with him his first day. The rest of the week went pretty similar - 8:30 breakfast, 10:30 snack, 11:00 Occupational Therapy, Noon lunch, 3:00 snack. But each day, he did a little more - more sips of the Boost, more spoonfuls of pureed foods, more cooperation. They started bringing me in for one of the sessions a day the last couple days because he was doing so well and they said they wanted to focus on him cooperating with me as well since the transition to home feedings had been the challenge in the past. He was still pretty cooperative and they watched from the observation room and gave me feedback afterward such as not to use yes/no questions ("Can you take a big bite for me?") and giving more positive verbal comments ("That was a good try. Now lets try again to get all the food off the spoon." instead of "Not quite. Try again.").
We're only a quarter of the way through the program but he's already taking a large part of his daily nutrition (even if it is almost exclusively liquid still) by mouth. I'm excited to see how far he'll come in the second week. At the same time, I'm worried that I might get sick of All Children's Hospital pretty quickly between being there 5 days a week with Kyle and being there working on the other two days.
Monday, August 16th was Kyle's first day in the program. We arrived at the Sexton building (located between the old Physicians Office Building and the new parking garage) at 8:00 am for his initial assessment. We met with Allison and Cara, the feeding therapists for the program, on the fourth floor. To get an idea of how an attempt at feeding normally went, they had me go in therapy room with him and try to feed him while they watched from a smaller adjoining room through a mirror/window. Kyle didn't cooperate, as usual. When time was up, Allison and Cara came back in, gave some feedback and what to expect during the program. I was given a welcome packet with information about the area, a map of downtown St Petersburg, a map of the hospital, information on Ronald McDonald House, tickets to Great Explorations museum, a coffee perks card for the cafe downstairs and an itenerary for the next four weeks.
Next, we went downstairs for him to be weighed and measured by Sandra, the dietician and to discuss his diet. He will be weighed and measured every Monday to compare to to previous week and to monitor any weight gain/loss during the program.
At 10:30 am, we went back to the fourth floor for a snack-time feeding session. This time, I watched from the observation room while Allison fed him. She started in slow, giving him toys to choose from ("Do you want to play with this toy or this toy?"). She asked him to show her ah-mmm's with a spoon, where he opened his mouth wide for the spoon, then closed his lips and pulled it out with nothing on it. She progressed gradually to dipping just the tip of the spoon in yogurt and kissing the spoons or even doing ah-mmm's. Each time, he'd choose from two toys which he wanted beforehand and he'd be rewarded with the chosen toy. She also used a juice box and gave him choices like, "Do you want 1 sip or 3 sips?" and he'd drink the chosen amount of sips. Each time he tried to distract or refuse, at the first sign of resistance she'd distract him with choosing between toys and he'd seem to forget that he was about to refuse.
After the session, it was time to head downstairs to the third floor to meet up with the occupational therapist, Roseann, and go to the occupational therapy room down on the second floor. Occupational therapy doesn't work on trying to get Kyle to actually eat. They do more to do with his aversion to certain textures or having things in his mouth at all. So they have him try to bite foods like fruit loops in half but he doesn't have to swallow the peices. He can just take them out. Or they might have him fingerpainting with pudding on the table but not eating the pudding. That type of thing. He did not like this first day of occupational therapy. He cried and screamed at Roseann quite a bit during his hour session.
After occupational therapy, we headed back upstairs for the lunch feeding session with Allison. It went smoothly and he gave no signs of resistance.
After the Noon feeding session, we had 2 1/2 hours to kill before the next session. I was so tired already. I had worked my usual 11 am - 11 pm shift the night before and had been up early to get all the last minute things packed up and get out of the house by 7 am. We went to get some food for me and checked out the Family Resource Center in the OCC (Outpatient Care Center). In the Family Resource Center, they have a book shelf full of books donated by employees that are free for patients/families that want them. We grabbed a few books that Kyle liked as well as some books that he thought big sister Hannah would like.
At 3 pm, Kyle had his last session for the day, a snack. He did so well. He acts like it's no big deal to drink the Boost Kids Essentials instead of having it through the tube and he even took spoonfuls of pureed food like it was no big deal!
During the week, we had arranged to stay at Chris's parents' house so that we don't have to do so much driving and we don't have to drive so far in the morning rush-hour traffic. So Kyle and I went to their house and both fell asleep on the couch. It had been a very busy day. I woke up a little later but Kyle was out like a light and we weren't able to try dinner with him his first day. The rest of the week went pretty similar - 8:30 breakfast, 10:30 snack, 11:00 Occupational Therapy, Noon lunch, 3:00 snack. But each day, he did a little more - more sips of the Boost, more spoonfuls of pureed foods, more cooperation. They started bringing me in for one of the sessions a day the last couple days because he was doing so well and they said they wanted to focus on him cooperating with me as well since the transition to home feedings had been the challenge in the past. He was still pretty cooperative and they watched from the observation room and gave me feedback afterward such as not to use yes/no questions ("Can you take a big bite for me?") and giving more positive verbal comments ("That was a good try. Now lets try again to get all the food off the spoon." instead of "Not quite. Try again.").
We're only a quarter of the way through the program but he's already taking a large part of his daily nutrition (even if it is almost exclusively liquid still) by mouth. I'm excited to see how far he'll come in the second week. At the same time, I'm worried that I might get sick of All Children's Hospital pretty quickly between being there 5 days a week with Kyle and being there working on the other two days.
Saturday, July 31, 2010
School and Happy Mealtimes
A lot has happened since Kyle's last hospital stay. He has been out of the hospital (other than the usual routine appointments and an outpatient swallow study or two) since 11/1/09!!!
In September last year, I started work at our favorite children's hospital - All Children's Hospital - doing registration/admissions in the Emergency Center on the weekends. At first, I had applied for a full-time position but it works well for me to be home all week and only work 12 hour shifts Saturdays and Sundays while Chris can be at home with the kids.
Kyle was hospitalized the last week in October 2009 for a touch of pneumonia.
Kyle did very well in the PreK at Curlew Creek Elementary School. My mind was put at ease as soon as I met his teacher, Ms. Laurie Curti, at Orientation. I explained to her that Kyle was on a feeding tube and did not take food by mouth and asked if she had ever had experience with any other children with feeding issues. She put my mind at ease by telling me that she had over 30 years experience in PreK with special needs children and had seen just about every type of developmental or feeding disorder. She said that she had in fact, in a previous year, had a student with a feeding tube and he had been eating by the end of the school year!
When Ms. Laurie asked me if Kyle was potty trained, I felt sheepish admitting that he was not. She told me that it was no problem, but she instructed me NOT to send any diapers - or even Pull-Ups with him! She said to get him underwear and send 5 complete outfits. Anything soiled, she would put in a plastic bag and send home for me to clean and replace, always keeping 5 complete outfits available. He was already using the potty sometimes after just the first week, and was completely daytime potty trained by a month!
At first, the main dilema was that by school system policy, they could not feed him anything - or even give him water to drink - in the classroom until they had a report from a successful "swallow study" clearing him for food and drinks. A swallow study is actually called an OPMS (oralpharyngeal motility study). During this test, the patient is seated in a chair attached to X-ray equipment while food/drinks with barium powder in them are given to the patient. Using the X-ray, they watch to see whether the food goes down the esophagus to the stomach or if there is aspiration (the food/drink going into the airway instead). We set up for Kyle to have a swallow study 10/1/09. He had been cooperating somewhat with pudding and similar textured foods at home but he fought heartily against the pudding, milk and juice we used as test items to the point that we had to put the pudding in a syringe and force it into his mouth. Despite the lack of cooperation, they were able to see the pudding go down the esophagus with no aspiration so they were able to clear him for puree foods and thickened liquids. However, the school couldn't accept this report alone because it was not an MD who signed off on it. It was a SLP (Speech-Language Pathologist). So then I had to have the GI (gastroenterology) doctor review the SLP's report and write a note based on the report saying that Kyle could have puree foods and thickened liquids.
As soon as the teacher got the okay, she began giving Kyle pudding, yogurt, mashed potatoes and other puree consistency foods as well as using a food processor to puree whatever she could from the regular cafeteria menu each day. In no time, he was eating daily almost full meals pureed at school. At home, however, he still fought us on anything by mouth. Sometimes it even seemed as though he fought harder at home the more he cooperated at school!
Since he was doing so well at school, Ms. Laurie wanted to take it to the next step so we scheduled another swallow study in April 2010 and Ms. Laurie even came along to help. She took the helm and the experiences were like night and day. Not only did he not fight, he laughed and sang during the study. The biggest problem they had was getting him to sit still, looking straight forward. They even fed him cheese puffs dusted with barium powder and he crunched and swallowed them like it was nothing. The test was a success and we were able to get the clearance for him to eat easily chewed solids at school. Although he was still fighting us at home over even pudding or yogurt, at school he was eating full meals for breakfast and lunch - soft spaghetti, bananas, grilled cheese sandwiches and more. Though it was frustrating that his success didn't carry over to home, it gave me hope that he wouldn't be always dependent on a feeding tube.
Not only was he doing well with eating, he was becoming more physically active, less timid, making friends and learning loads. He would see a sign with an "L" and he'd shout out "L for Ms Laurie!" or he'd see an "O" and shout "O for Olivia!". It wasn't long before we could ask him how to spell his name and he'd grin and say, "K-Y-L-E!". He was also taking the regular school bus with Hannah to and from school (except on days when he had private therapy appointments). He was so popular with the older girls. On more than one occaision, he came off the bus with a "love letter" from a little girl on the bus - just a piece of paper with I love Kyle scrawled on it and signed with the little girl's name, but he treasured it like it were gold.
Unfortunately, since Summer vacation started, he still doesn't eat for us at home and now he's only at home. But he's finally been accepted and scheduled for "Happy Mealtimes", the intensive feeding therapy program at All Children's Hospital. Starting August 16th, Kyle will be seen four times a day, Monday through Friday, for four weeks! During this time, I will be staying in the Ronald McDonald House with Kyle and my parents will be taking care of the girls during the day at home while Chris is at work during the week and then on Friday nights I'll bring him home so Chris can take care of him and the girls while I work and we'll go back to All Children's on Monday mornings. This promises to be a challenging four weeks and I'm sure I'll be sick of the hospital - possibly even moreso than when Kyle was in NICU - by the end of this.
In September last year, I started work at our favorite children's hospital - All Children's Hospital - doing registration/admissions in the Emergency Center on the weekends. At first, I had applied for a full-time position but it works well for me to be home all week and only work 12 hour shifts Saturdays and Sundays while Chris can be at home with the kids.
Kyle was hospitalized the last week in October 2009 for a touch of pneumonia.
Kyle did very well in the PreK at Curlew Creek Elementary School. My mind was put at ease as soon as I met his teacher, Ms. Laurie Curti, at Orientation. I explained to her that Kyle was on a feeding tube and did not take food by mouth and asked if she had ever had experience with any other children with feeding issues. She put my mind at ease by telling me that she had over 30 years experience in PreK with special needs children and had seen just about every type of developmental or feeding disorder. She said that she had in fact, in a previous year, had a student with a feeding tube and he had been eating by the end of the school year!
When Ms. Laurie asked me if Kyle was potty trained, I felt sheepish admitting that he was not. She told me that it was no problem, but she instructed me NOT to send any diapers - or even Pull-Ups with him! She said to get him underwear and send 5 complete outfits. Anything soiled, she would put in a plastic bag and send home for me to clean and replace, always keeping 5 complete outfits available. He was already using the potty sometimes after just the first week, and was completely daytime potty trained by a month!
At first, the main dilema was that by school system policy, they could not feed him anything - or even give him water to drink - in the classroom until they had a report from a successful "swallow study" clearing him for food and drinks. A swallow study is actually called an OPMS (oralpharyngeal motility study). During this test, the patient is seated in a chair attached to X-ray equipment while food/drinks with barium powder in them are given to the patient. Using the X-ray, they watch to see whether the food goes down the esophagus to the stomach or if there is aspiration (the food/drink going into the airway instead). We set up for Kyle to have a swallow study 10/1/09. He had been cooperating somewhat with pudding and similar textured foods at home but he fought heartily against the pudding, milk and juice we used as test items to the point that we had to put the pudding in a syringe and force it into his mouth. Despite the lack of cooperation, they were able to see the pudding go down the esophagus with no aspiration so they were able to clear him for puree foods and thickened liquids. However, the school couldn't accept this report alone because it was not an MD who signed off on it. It was a SLP (Speech-Language Pathologist). So then I had to have the GI (gastroenterology) doctor review the SLP's report and write a note based on the report saying that Kyle could have puree foods and thickened liquids.
As soon as the teacher got the okay, she began giving Kyle pudding, yogurt, mashed potatoes and other puree consistency foods as well as using a food processor to puree whatever she could from the regular cafeteria menu each day. In no time, he was eating daily almost full meals pureed at school. At home, however, he still fought us on anything by mouth. Sometimes it even seemed as though he fought harder at home the more he cooperated at school!
Since he was doing so well at school, Ms. Laurie wanted to take it to the next step so we scheduled another swallow study in April 2010 and Ms. Laurie even came along to help. She took the helm and the experiences were like night and day. Not only did he not fight, he laughed and sang during the study. The biggest problem they had was getting him to sit still, looking straight forward. They even fed him cheese puffs dusted with barium powder and he crunched and swallowed them like it was nothing. The test was a success and we were able to get the clearance for him to eat easily chewed solids at school. Although he was still fighting us at home over even pudding or yogurt, at school he was eating full meals for breakfast and lunch - soft spaghetti, bananas, grilled cheese sandwiches and more. Though it was frustrating that his success didn't carry over to home, it gave me hope that he wouldn't be always dependent on a feeding tube.
Not only was he doing well with eating, he was becoming more physically active, less timid, making friends and learning loads. He would see a sign with an "L" and he'd shout out "L for Ms Laurie!" or he'd see an "O" and shout "O for Olivia!". It wasn't long before we could ask him how to spell his name and he'd grin and say, "K-Y-L-E!". He was also taking the regular school bus with Hannah to and from school (except on days when he had private therapy appointments). He was so popular with the older girls. On more than one occaision, he came off the bus with a "love letter" from a little girl on the bus - just a piece of paper with I love Kyle scrawled on it and signed with the little girl's name, but he treasured it like it were gold.
Unfortunately, since Summer vacation started, he still doesn't eat for us at home and now he's only at home. But he's finally been accepted and scheduled for "Happy Mealtimes", the intensive feeding therapy program at All Children's Hospital. Starting August 16th, Kyle will be seen four times a day, Monday through Friday, for four weeks! During this time, I will be staying in the Ronald McDonald House with Kyle and my parents will be taking care of the girls during the day at home while Chris is at work during the week and then on Friday nights I'll bring him home so Chris can take care of him and the girls while I work and we'll go back to All Children's on Monday mornings. This promises to be a challenging four weeks and I'm sure I'll be sick of the hospital - possibly even moreso than when Kyle was in NICU - by the end of this.
Wednesday, August 19, 2009
School!
Next Tuesday, Hannah will start Kindergarten and Kyle will start 3-year-old Pre-K at Curlew Creek Elementary School.
Kyle will be attending the Pre-K through a special education program for children with disabilities. Shortly before his 3rd birthday, Kyle was evaluated by the FDLRS (Florida Diagnostic Learning Resources System) specialists to determine his eligibility/need for special services. It was determined from the evaluations that he needs language, physical and occupational therapies, which he will receive at the school. So he will attend for the normal Pre-K hours with a mixed group of children with and without special needs and will have therapy in the classroom as well as some one-on-one therapy. There is a full-time nurse at the school who will operate his feeding pump and be on hand for any medical issues that come up. This was a relief since I was told that they would have a nurse come in just for the feedings if there wasn't one already full-time at the school. I feel much better knowing there is a nurse on premesis the entire time he's there. It was also a relief to know that Hannah and Kyle could attend the same school. They had told me that he would be going to whichever school was closest and had the services he needed. It happened that the school Hannah was assigned to did have the services Kyle needs.
I'm nervous about the start of school. I'm not sure what to expect. For one thing, I never attended public school myself. I was homeschooled from Kindergarten through high school graduation. Now I'll be sending, not one, but two kids off to school. I just hope that I can manage getting them ready and to the school on time each day. I'm sure Audrey will get into 3 times as much to make up for their absence during the mornings.
I've already bought the supplies Hannah needs for Kindergarten but they don't have a set list for Pre-K so all I know is that I need to bring a bag with his feeding pump, pediasure, diapers (they will work with him on potty training at school and we will reinforce it at home), and an emergency change of clothes. Other than that, I have no clue. I don't have any idea what his schedule will be other than when to drop him off and pick him up. I know that he'll have 180 minutes of therapies each week but I don't know when. I don't know what time his lunch will be, or nap, or anything like that. Hopefully, I'll have some questions answered at the orientation on Monday.
Kyle will be attending the Pre-K through a special education program for children with disabilities. Shortly before his 3rd birthday, Kyle was evaluated by the FDLRS (Florida Diagnostic Learning Resources System) specialists to determine his eligibility/need for special services. It was determined from the evaluations that he needs language, physical and occupational therapies, which he will receive at the school. So he will attend for the normal Pre-K hours with a mixed group of children with and without special needs and will have therapy in the classroom as well as some one-on-one therapy. There is a full-time nurse at the school who will operate his feeding pump and be on hand for any medical issues that come up. This was a relief since I was told that they would have a nurse come in just for the feedings if there wasn't one already full-time at the school. I feel much better knowing there is a nurse on premesis the entire time he's there. It was also a relief to know that Hannah and Kyle could attend the same school. They had told me that he would be going to whichever school was closest and had the services he needed. It happened that the school Hannah was assigned to did have the services Kyle needs.
I'm nervous about the start of school. I'm not sure what to expect. For one thing, I never attended public school myself. I was homeschooled from Kindergarten through high school graduation. Now I'll be sending, not one, but two kids off to school. I just hope that I can manage getting them ready and to the school on time each day. I'm sure Audrey will get into 3 times as much to make up for their absence during the mornings.
I've already bought the supplies Hannah needs for Kindergarten but they don't have a set list for Pre-K so all I know is that I need to bring a bag with his feeding pump, pediasure, diapers (they will work with him on potty training at school and we will reinforce it at home), and an emergency change of clothes. Other than that, I have no clue. I don't have any idea what his schedule will be other than when to drop him off and pick him up. I know that he'll have 180 minutes of therapies each week but I don't know when. I don't know what time his lunch will be, or nap, or anything like that. Hopefully, I'll have some questions answered at the orientation on Monday.
Monday, April 13, 2009
More Happenings...
Friday Kyle had his hospital discharge follow-up at the pediatrician's office. I was so glad to hear the doctor give him a clean bill of health (for him, at least).
Sunday morning we went to church for Easter service and Chris was in charge of special effects. He got to make it rain indoors. After church, the kids played on the playground and Chris hurried home to hide Easter eggs. All the excitement must have been too much for Hannah. She threw up on herself, the chair and Kyle's leg. No fever and she was fine after that, though. So much for the photo op with all three kids dressed up so nice.
Before going to bed, Hannah mentioned that her ear hurt again so she stayed home from pre-K this morning and I got her an appointment at the pediatrician's office. She was a bit apprehensive and wanted me to tell the doctor not to give her any shots this time. The doctor was surprised to see us yet again but she said that Hannah's ear is fine. She said that her ear might have just popped or something.
Audrey's follow-up appointment is Friday so we'll be back again to the pediatrician's office. We should really just move in.
After Hannah's appointment, we picked up Kyle from PPEC to bring him to his occupational therapy appointment. We're trying to get his schedule back to normal. When we got in the car from PPEC, I asked Kyle if he had been a good boy at daycare and he grinned real big and said, "Nooo".
When the therapist, Jen, called Kyle back he started crying and screaming like he'd been fatally wounded so I went back with him and both girls came with me. The therapy session started the worst it's ever been with the screaming but eventually he started having fun with Hannah joining in. It ended up being one of the most progressive sessions he's ever had! He reached into the bucket of pasta (to work on his texture aversions) and easily pulled out blocks and even dug through for pennies without any fits about the texture on his hands. Then, although he screamed at first about being put on the log swing, after Hannah got on with him, he started having fun and one time even crashed on the large crash cushions of his own effort and even climbed across three crash cushions (kind of like crawling over lumpy foam) to "catch Hannah". Normally, he would cry and fight about even one crash cushion!
On the way out, they gave Kyle a "Woody" sticker (from the movie Toy Story). He's been a little bit obsessed with Toy Story lately. So on the way home, I asked him, "What does Woody say?" and he said, "Reach for the sky!" just like Woody says it in the movie. So I said, "What else does Woody say?" and he said, "Somebody poisoned the water hole!" (again, just like in the movie). One more time, he answered, "Ev-ery-thing" (like near the end of the movie). It was just so cute!
Sunday morning we went to church for Easter service and Chris was in charge of special effects. He got to make it rain indoors. After church, the kids played on the playground and Chris hurried home to hide Easter eggs. All the excitement must have been too much for Hannah. She threw up on herself, the chair and Kyle's leg. No fever and she was fine after that, though. So much for the photo op with all three kids dressed up so nice.
Before going to bed, Hannah mentioned that her ear hurt again so she stayed home from pre-K this morning and I got her an appointment at the pediatrician's office. She was a bit apprehensive and wanted me to tell the doctor not to give her any shots this time. The doctor was surprised to see us yet again but she said that Hannah's ear is fine. She said that her ear might have just popped or something.
Audrey's follow-up appointment is Friday so we'll be back again to the pediatrician's office. We should really just move in.
After Hannah's appointment, we picked up Kyle from PPEC to bring him to his occupational therapy appointment. We're trying to get his schedule back to normal. When we got in the car from PPEC, I asked Kyle if he had been a good boy at daycare and he grinned real big and said, "Nooo".
When the therapist, Jen, called Kyle back he started crying and screaming like he'd been fatally wounded so I went back with him and both girls came with me. The therapy session started the worst it's ever been with the screaming but eventually he started having fun with Hannah joining in. It ended up being one of the most progressive sessions he's ever had! He reached into the bucket of pasta (to work on his texture aversions) and easily pulled out blocks and even dug through for pennies without any fits about the texture on his hands. Then, although he screamed at first about being put on the log swing, after Hannah got on with him, he started having fun and one time even crashed on the large crash cushions of his own effort and even climbed across three crash cushions (kind of like crawling over lumpy foam) to "catch Hannah". Normally, he would cry and fight about even one crash cushion!
On the way out, they gave Kyle a "Woody" sticker (from the movie Toy Story). He's been a little bit obsessed with Toy Story lately. So on the way home, I asked him, "What does Woody say?" and he said, "Reach for the sky!" just like Woody says it in the movie. So I said, "What else does Woody say?" and he said, "Somebody poisoned the water hole!" (again, just like in the movie). One more time, he answered, "Ev-ery-thing" (like near the end of the movie). It was just so cute!
Thursday, April 9, 2009
Audrey at the Doctor's
Well, this morning Audrey wasn't feeling so good. She was congested, boogery and had a fever (101F). I gave her a dose of Tylenol but a couple of hours later, she was not only running a fever again (103F), but she was shivering - chattery gums (she only has one tooth so far) and everything. So I brought her to the pediatrician. By the time we got there, she had stopped shivering but she still had a fever. They did a finger prick and found out she had a high white blood cell (WBC) count, which means she's fighting some kind of infection. She had no sign of any ear infections so they tried to get a urine sample to check for a urinary tract infection but she wasn't so cooperative with that. They are treating it as a general infection. They gave her a shot and a prescription for Amoxicillan. The pediatrician did mention that she was a very happy baby for being so sick. She was giggling and playing in spite of it all.
We'll be going back to the pediatrician tomorrow morning for Kyle's hospital discharge follow-up appointment and they will be giving him another immunization against pneumonia. He's already had one but the immunology work-up they did on him came up negative for immunity so they're going to try again. Considering he had pneumonia twice last year and once this year already, it would be nice if the vaccine took this time.
We'll be going back to the pediatrician tomorrow morning for Kyle's hospital discharge follow-up appointment and they will be giving him another immunization against pneumonia. He's already had one but the immunology work-up they did on him came up negative for immunity so they're going to try again. Considering he had pneumonia twice last year and once this year already, it would be nice if the vaccine took this time.
Wednesday, April 8, 2009
Kyle Home
They discharged Kyle yesterday and I took him home after an interview for an echo tech position. Kyle's now on a couple of cardiac meds as a precaution and we have Orapred (an oral steroid) to give him in case of emergency.
Monday, April 6, 2009
Out of ICU... Still at the Hospital
Kyle's been moved to the 3rd floor which means he's close to going home but it means a lot less attention and a lot louder alarms until then. But at least we got the bed close to the bathroom (the coveted spot in any room) and there's room for a sleep chair. I'll just have to beg for a blanket (good thing I brought the pillow from downstairs, at least). Hopefully tomorrow he'll be able to go home. That actually works out well because that means that I can have my interview and then just bring Kyle home afterward.
Off Oxygen
Kyle was taken off oxygen this morning and is doing excellent. The doctors say that he'll probably move upstairs (out of the ICU) today and if he stays off oxygen, he'll probably go home tomorrow!
He's in an excellent mood today - playing with the toys and chattering up a storm!
He's in an excellent mood today - playing with the toys and chattering up a storm!
Sunday, April 5, 2009
Kyle Update
Kyle is off pretty much all of the medications and they are starting to wean him off the oxygen. They have him down to 1 liter of oxygen and we'll see how well he does on that.
The pulmonologist has mentioned the possibility of giving Kyle a prescription for an oral steroid for use if he gets like this again so that he gets it immediately rather than having to go through the ER process first. The hope is that if he gets the steroid right away, there won't be as much damage to undo.
The cardiologist mentioned the possibility of starting him back on daily cardiac medications. His heart is okay now but the continuous stress on the heart from all the lung issues may cause problems in the long run so he may need the medications as a preventative measure.
Meanwhile, I got a call from the head echo tech and I have an interview scheduled for Tuesday afternoon. Yay!
The pulmonologist has mentioned the possibility of giving Kyle a prescription for an oral steroid for use if he gets like this again so that he gets it immediately rather than having to go through the ER process first. The hope is that if he gets the steroid right away, there won't be as much damage to undo.
The cardiologist mentioned the possibility of starting him back on daily cardiac medications. His heart is okay now but the continuous stress on the heart from all the lung issues may cause problems in the long run so he may need the medications as a preventative measure.
Meanwhile, I got a call from the head echo tech and I have an interview scheduled for Tuesday afternoon. Yay!
Thursday, April 2, 2009
Hannah's Doctor's Appointment
Hannah finally has medical insurance as of yesterday so I set her up for a full physical. That included her vaccinations for Kindergarten. She was thrilled. She was going to get a doctor's check-up and even shots! I'm not being sarcastic. For some reason, she thought this was the coolest thing ever. (She doesn't think it's so great NOW, but she was really excited.)
So I left the hospital and met my mom with the girls at the pediatrician's office. Hannah was thrilled when they called HER name for a change, instead of Audrey or Kyle. After collecting the urine sample, she said, "That was strange".
She passed the hearing test in both ears but her left ear barely passed. When the doctor looked at her ears, she was surprised the left ear passed at all. She had a very bad infection.
I asked the pediatrician about her tonsils. The pediatrician agreed that they were "generous" in size and combined with history of snoring and disturbed sleep may indicate a need for a tonsillectomy.
So Hannah's now on an antibiotic and tylenol for the ear infection and pain from the shots and I have a referral to get her in with an ENT about her tonsils.
So I left the hospital and met my mom with the girls at the pediatrician's office. Hannah was thrilled when they called HER name for a change, instead of Audrey or Kyle. After collecting the urine sample, she said, "That was strange".
She passed the hearing test in both ears but her left ear barely passed. When the doctor looked at her ears, she was surprised the left ear passed at all. She had a very bad infection.
I asked the pediatrician about her tonsils. The pediatrician agreed that they were "generous" in size and combined with history of snoring and disturbed sleep may indicate a need for a tonsillectomy.
So Hannah's now on an antibiotic and tylenol for the ear infection and pain from the shots and I have a referral to get her in with an ENT about her tonsils.
Wednesday, April 1, 2009
Doing Better
Kyle had the C-PAP mask on overnight (which he kept asking to take off) but he was doing much better. Still retracting but not as much. His respiratory rate was more normal and his sats were staying high. The doctor just came in a little while ago and said he could be switched to high flow nasal canula and he was taken off the mask. He's doing well with just slightly lower sats at 3 liters of oxygen. He's just a little more irritable than usual. Every time anyone says hi to him, he starts crying, afraid we're going to do something else to him. His hand, arm and foot are bruised from numerous needle sticks over the past couple of days. He already has numerous "white freckles" (as I call the needle scars) on his hands from all the past hospitalizations.
In other news, I happened to read a friend's blog last night (Jon & Rebecca Sullivan) that mentioned that THEIR son was going to be in All Children's today! I saw them downstairs this morning getting a snack while they waited for their son to get out of neurosurgery. So I'm getting to socialize and eat chicken tampico today. I'm so spoiled.
Well, now Kyle's getting used to the canula and getting his spirit back, talking and playing. Ronald McDonald came in for a visit and gave him a toy so he's in a better mood now.
In other news, I happened to read a friend's blog last night (Jon & Rebecca Sullivan) that mentioned that THEIR son was going to be in All Children's today! I saw them downstairs this morning getting a snack while they waited for their son to get out of neurosurgery. So I'm getting to socialize and eat chicken tampico today. I'm so spoiled.
Well, now Kyle's getting used to the canula and getting his spirit back, talking and playing. Ronald McDonald came in for a visit and gave him a toy so he's in a better mood now.
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.
Monday, November 3, 2008
Carnival!
I took Hannah to her first carnival last night. There was a little carnival at Countryside Mall and Hannah had commented on the ferris wheel. We went on the ferris wheel, the carousel and the bumper cars and she went on the kiddie rollercoaster, the motorcycle merry-go-round and the airplane merry-go-round. I forgot the camera at home so I had to use my phone for a camera but I couldn't miss the photo opportunity.
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