Friday, December 28, 2012

Monday, December 24, 2012

Perspective

Gabe was transferred out of Icu today and he is now on a respiratory unit. Unfortunately because he is in isolation for RSV, visitors are still limited. He is on 1L of regular oxygen now. He needs to be off oxygen for 4 hours to go home. He is wheezing a little and breath sound are slightly diminished, so they gave him a breathing treatment and we're trying to get him out of bed a little...at least as much as we can with him tethered to leads. I think he's done with this place. He keeps telling me "ready to go home". Whenever anyone with scrubs on walks in the door he yells "all done".
It's hard being here over Christmas. At least the kids don't totally get it yet. I think Christmas on the 26 th will be just fine. Justin stayed overnight with Gabe. He was woken up at 5am by an adult crying hard in the next room.  We are lucky compared to many families here. We were talking yesterday that at least it's not heart failure.  At least it's just a bad bug and we know he'll be okay..perspective I guess. We are very blessed.

Saturday, December 22, 2012

Update from ICU

Gabe is doing a little better today. He is still on high flow oxygen, but they are slowly weening it down. The nasal swab they did yesterday confirms that he has RSV. He ate a little bit today. Still refusing to drink. Slight fever, but nothing major. It will just take some time and oxygen support to get him over this. Got some smiles from him.

Friday, December 21, 2012

Hospitalized

Gabe started with a cold tues afternoon. He had a fever and was coughing some. On wed he started to retract a little and work a little harder to breathe. He was wheezing some. Took him to the pediatrician who gave him a breathing treatment and ruled out pneumonia. Continued to use inhaler and watch him close. Thursday he started retracting a little more and just wasn't getting better. Into Friday he started breathing really fast and were no longer able to stay on top of it. Brought him to the Ed. They gave him some breathing treatments. He eventually needed oxygen and that bought us an admission. After 5 hours in the emergency room they sent us to the floor. He was refusing to eat. We began giving lots of fluid through his gtube to keep him hydrated. His breathing became more labored and very fast. It was as if he wasn't responding to the oxygen. I was very worried. Icu came and looked at him and immediately transferred him to their unit. He is on high flow oxygen which is just oxygen with extra pressure to help keep the airway open. They also started an IV to keep him hydrated. His labs are much better.  He is still breathing fast, but it is less labored and he is acting more like himself. Not sure if this is a cold or flu. Either way, it made his narrow floppy airway very unhappy. Really praying he is better by Christmas and that Alyssa doesn't get it.

Wednesday, November 14, 2012

Sunday, November 4, 2012

Princess

Happy birthday to my sweet baby girl. You are spunky and dramatic and full of life. I am so happy to be your mama. The past year has flown by. I'm glad you had such a great day princess Alyssa Rose.

Wednesday, October 31, 2012

Thursday, October 25, 2012

Thursday, October 18, 2012

Medical Update

Gabe had a sleep study last month.  We went to the doctor this week to review the results.  His sleep apnea is still mild at 2.5 episodes of pausing per hour (down from 4.5 last year).  His oxygen levels never drop significantly, so this is a good improvement.  His airway is getting bigger and he is getting good quality sleep.  We don't have to have another sleep study for 18 months. 
We went to GI last week. Gabe is now close to 27lbs.  He is maintining his weight since dropping all tube feeds last spring and continues to be at the 50% on the Down Syndrome weight curve.  His height is 70% on the curve.  He is drinking anywhere from 10-20oz by mouth a day.  The fluid goal is about 25oz/day by mouth in order to get the tube out.  We will be working on drinking more this winter and in the spring will be doing 3-5 day trials of nothing through the tube to see if Gabe is able to keep up his hydration independently.  The GI doc sounded pretty optimistic of the tube coming out by the summer.  It's all in Gabe's time, but it's so reassuring that the end is in site. 
Gabe has a cardiology appointment next month.  They will do an EKG, but are not going to ECHO since his repair is so good they can't even hear a murmur.
Opthalmology appointment is scheduled for January, but so far, Gabe' eyesight is good.

Alyssa is sick with the pukes...again.  Poor girl.

Monday, October 15, 2012

Fun filled weekend

We had a fun weekend with the kids. They both had swim class on Saturday. We then went to kinman farms pumpkin patch. Gabe really loved the animals this year. Alyssa is on the brink of walking so she is just all over the place. We were all worn out afterwards. It was a fun day.

Monday, October 1, 2012

It's Down Syndrome Awareness month!

So what have we been up to lately you ask? Preschool, sleep study, illness x 3. I'll update with more details later this week, but for now...happy October.

Thursday, August 30, 2012

This makes me smile

Paul told me to have high expectations for Gabe. This is why.
http://news.cincinnati.com/article/20120820/COL03/308200093

I want to go to school too!

Playing hookie

The kids have been sick lately.  Last Monday, Gabe woke up in the middle of the night gasping.  Took him to the emergency room and it was croup....again.  They gave him a steroid.  He started draining the next day.  He also started having intermitent diarrhea the next day.  Over the weekend, it turned to full force.  The smell of poo is just now clearing from my house.  Luckily I was able to keep him hydrated.  Alyssa has had some drainage going on, but she's okay.  I hate when the kids are sick.  Unfortunately due to the sickness, Gabe has not been at Redwood school for a week.  He was also suppose to start preschool at River Ridge yesterday and I had to call him in sick for his first day.  I felt confident he was over it today, so I took him to Redwood in the morning.  I stayed for breakfast.  I then watched him board the bus to go to River Ridge.  After lunch, he'll be bused back to Redwood for the afternoon and to see his therapists.  It's going to be a long day for him.  He wasn't having it today.  He has spent the past week at home and his schedule was off.  His backpack made him off balance some and he fell walking this morning.  He caught himself and was fine, but he was very fussy after that.  He was coughing some in his sleep last night, so I think he was still kind of tired as well.  When the bus pulled up he cried when I passed him off to the monitor.  I hurried inside b/c I knew if I lingered it would make it worse.  I wanted to go to the public preschool to make sure he was okay, but I didn't.  I know he'll be fine and if he saw me, it would start the whole process over again.  It's going to be an adjustment, but I keep telling myself this will be good for him.  Looking at the big picture, I am so thankful this moment is here...Gabe healthy and in an inclusive preschool. 

Wednesday, August 15, 2012

Mmmmm......spaghetti

Alyssa is starting to eat solid foods. She's a little unsure about it, but Gabe showed her how it's done.

Monday, July 23, 2012

NOLA

Justin had a work convention in New Orleans last week.  I tagged on for the last 3 days for a mini 5 year wedding anniversary vacation.  We had a great time.  We ate alot of food.  We missed the kids terribly, but it was good for us.  Much thanks to the Grandparents for watching the kids.