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.

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!

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.

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.

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!

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!

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.

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.

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.

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.

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.

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.