Home sweet home

The past couple days have been exhausting. We're trying to get a routine in place to get Gabe on as normal a schedule as possible. I think he was in shock the first day home and didn't sleep much. He did take a long nap today. He just fell asleep as Justin was reading to him (I think Justin likes storytime more than Gabe). The problem is, he wakes up as soon as we place him in his crib. He wants us to hold him or at least be near him all the time or he throws a fit. I think he was spoiled a little bit in the hospital...how could he not be spoiled?...we are paying the price now. We are giving him feeds through his Gtube over an hour 6 times a day. That means overnight, we start the feed at 11pm, end at 12am, start at 2am, end at 3am, start at 6am, end at 7am. Waking up 5 times per night to operate this pump has been difficult. I'm going to try to cut out the 2am feed and add the volume to the other feeds and see how he tolerates it. We'll work on condensing the feeds to bolus over gravity in a couple weeks. We also have to change Gabe's dressing on his chest twice a day. He had a suture that became inflammed and scabbed. They removed the scab at the hospital so he wouldn't get a skin infection. We have to clean it with soap and water, put some wet gauze in the area along with ointment, and a dressing over that. He screams during the dressing changes. We offer him a pacifier when he feeds and dip the pacifier in formula to get him use the idea of sucking when getting full. We try syringing tiny amounts of formula into a nipple. The most he has ever taking with this is 7ml. He gags alot. With poor muscle tone and reflux, feeding from a bottle is difficult. Often times babies like Gabe go from tube feed to baby food or sippy cup. We'll be trying a little rice cereal in the coming weeks. We are also doing exercises to help strengthen neck muscles and reaching for objects. Talk about a full time job. The exhaustion is totally worth it....so happy to be home. I'm excited for Halloween tomorrow. Stay tuned for pictures.

Discharged!

57 days after being admitted, Gabe is discharged with the diagnosis: status post repaired AVSD, reflux resolved with Gtube feeds/nissen, subglottic stenosis, and sleep apnea. His heart is fixed and we just have tube feeds, oxygen at night and Prevacid, Lasix and Captopril. I couldn't be happier. I feel like Gabe was born today in a way. It's so nice to have him at home without having open heart surgery looming over us. I am so thankful. Thank you for everyone who sent cards, made us food, gave us gift cards, etc. We couldn't have made it through this without you. Thank you also for everyone who walked and/or donated to Team Cash's Buddy Walk earlier this month. Gabe's team raised over $11,000 and ranked third in donations for the Cincinnati Tristate area. And a huge thank you to Kelly and Ryan Shrout: Kelly organized the Buddy Walk and stayed with Gabe during her downtime as a nurse on his unit, and Ryan helped organize the Buddy Walk and donated some of his personal belongings to a raffle in Gabe's name. Gabe will definitely be at the Buddy Walk next year. Many have asked how we have gotten through this and the answer really is...because we had to...there was no other option.

Here are some things that made it easier:

1. Grandma's...they are wonderful and allowed Justin and I to have breaks from the hospital guilt free.

2. Coworkers...I work with great people and have a wonderful manager who allowed me to have an extended maternity leave to be with Gabe. Not all jobs would have been as understanding. They wear bracelets that say "Gabe" on them to show there support. They are all a great people.

3. Hollistic Health...they came by the room and gave us massages...enough said

4. Blogging....This blog has been therapeutic. I originally started it as a way to keep in touch with family and friends regarding Gabe's medical status so I wouldn't have to repeat the same story over and over. Turns out I've met a great network of other Down Syndrome mothers who have "been there, done that" and know exactly what it is like. It was so helpful looking at pictures of their children during their surgery and recovery and comparing it to the super cute pictures of their kids now.

Things I've learned:

1. Advocate for your child. Even if they do end up talking about you in psychosocial rounds b/c you are so upset about the wrong ET tube being placed in your child, you have the right to let your strong voice be heard and not back down.

2. Tell the doctors, RN's and therapists who are extra good with you and your baby that they do a great job. Nothing like positive reinforcement to lift someone's spirits.

3. Never complain about the cost of insurance...we'd be bankrupt without it.

4. You know your child best. Speak up when something isn't right.

5. Talk to other families. Realize that you do not have the sickest kid in the hospital. Remember how lucky you are to have a happy child who is getting healthier by the day.

6. The biggest and most important thing I've learned through all this is: DON'T EVER GIVE UP ON GABE!

When Justin was 19, he went to France with a class from St. Henry. While he was there, he bought 2 bottles of wine: 1 for when he got married and 1 for when he had his first child. The marriage wine has been gone for 2 years now. With me nursing in the beginning and then Gabe being sick, we never got around to drinking the baby wine. We are each having a glass right now and it is wonderful.

Homeword Bound

They reviewed Gabe's sleep study and he still has severe apnea. However, he was able to keep his oxygen saturations in good range with just 1/8L of oxygen. The best treatment for his airway obstruction is CPAP. Unfortunately, the mask is too big for him and covers his eyes. So, in the interim, he will be using oxygen and then switching to CPAP when it fits him better. The oxygen will treat the oxygen desats and keep him in the 90's, however, it will not treat the apneic events themselves. This disruption in sleep may lead to neurological delays and behavior issues over time. The good news is, we know he has it and pulmonary will follow him close and get him in a CPAP mask as soon as possible. Often times with Trisomy 21 babies, it goes untreated for a long time b/c you don't even know they have it. I guess Gabe is lucky in a way to have had monitors on him for the past 2 months to detect it this early. So, with that being said, there is no reason we need to stay at the hospital...that's right...we're going home today! There's still a ton of discharge stuff and home health stuff to set up, but I'm getting excited. I actually believe them this time...we're going home!

ZZZZZZZZZZZZZZZZZZZZZZZ

Gabe failed his sleep study again Saturday night. He was so fussy and couldn't get comfortable. He barely slept. They detected that he had 10-15 apnic episodes per hour. Even though this is improved from last month (before the GTube and heart surgery, he was having 27 apnic episodes per hour), it's still considered moderate to severe apnea. Cardiology spoke with Pulmonary today explaining how great clinically he was looking and that he's been off oxygen since Thursday night and doing well. Pulmonary said they were going to review his sleep study again slide by slide and see what trends are going on and if he got enough hours of sleep to make the study accurate. They're going to come back this afternoon or tomorrow morning to discuss if they need to repeat the study or if they have an intervention they recommend.

"Happy and sad and back again"

Gabe's scope today showed laryngomalacia to a mild to moderate degree. This means that a flap of tissue flops over the larynx obstructing the airway at times. Everything else looked healed and good. Most babies grow out of laryngomalacia by the age of 2. The next step is to do a sleep study tomorrow night to see how much the laryngomalacia is obstructing, causing apnea and is oxygen enough to treat it. ENT and Pulmonary seemed pretty pleased...they were expecting his airway to look a little worse. Gabe is still off oxygen. They did have to put it on for a couple hours last night, but he's been off all day. He's discovered his facial muscles and makes the funniest expressions...cracks us up! One second he's pouting and the next he's cracking up.

The sun will come out tomorrow

Gabe is having an MLMB scope tomorrow to figure out what to do with his airway. He will have a sleep study this weekend probably. That will give use more info about how his apnea currently is since he's had the Gtube with Nissen and heart surgery since the previous study. Hopefully we'll be out of here sooner than later. His heart is doing great and he's been off oxygen for an hour and a half now and doing okay. If only we could get the apnea under control. Here are some cute pics from this evening. Gabe has been happy this afternoon.

This is a no trach zone

Pulmonary came by today and talked about doing a joint scope with ENT on Friday. They mentioned doing another sleep study since Gabe's first study showed such significant apnea. He then mentioned that a trach is still not out of the picture. That was kind of a shock to me considering his oxygen saturations stay in the upper 90's to 100% on 1/8 liter of oxygen and he doesn't desat. We're going to talk to the Pulmonary attending again tomorrow to ask more questions about possiblities such as CPAP nasal prongs or mask. We'll know more after the scope and second sleep study. I was hoping to get out of here this weekend, but now it is definitely going to be next week....if he doesn't need a trach, or it could be longer...sigh.

In happier news, Gabe has been playful and acting more like himself all day. He's so cute and is cooing more and grasping rattles more....so fun. Here are some pics of Gabe playing on Daddy's lap.