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.
Saturday, July 31, 2010
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!
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