Friday, October 30, 2009

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.

Tuesday, October 27, 2009

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!

Monday, October 26, 2009

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.

Friday, October 23, 2009

"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.

Thursday, October 22, 2009

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.

Wednesday, October 21, 2009

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.

Hopefully home next week!

Gabe's diarrhea is getting alittle better. It's not as much and not as frequent. He no longer has a fever and all his cultures are negative. The best thing is that he's acting more himself. He's alot less fussy and being very cute this morning. His electrolytes and WBC count are all looking much better. They'll restart his Lasix today. They are also going to start windowing him with his feeds and seeing how he does off oxygen (he really likes 1/8 liter). They are also going to talk to Pulmonary to see if they want to do another sleep study before we go since Gabe has pretty significant apnea. He also has another MLMB scope on Friday to make sure his airway is looking okay. We're getting there...the end is in sight. Hopefully next week. I really want to be home for Halloween...Gabe is going to be a monkey.

Monday, October 19, 2009

yuck

Gabe has diarrhea.... bad diarrhea. He spiked a temp overnight Saturday and the diarrhea started Sunday morning and is still going on. They've sent stool cultures and put him on a broad antibiotic. Poor little guy is so fussy and uncomfortable. He started getting dehydrated last night and I asked about IV fluids. They kept saying they didn't want to load him with fluid and flood his lungs according to the fellow. Only thing is his heart is repaired, so this shouldn't happen anymore. I asked for them to round on him first this morning so I could ask the Attending directly to start IVF's. They gave him a bolus and his heart rate has come down some and he looks much more comfortable now. Poor little man. He needs to get out of the hospital to get away from all the germs. I swear if it's not one thing, it's another.

Saturday, October 17, 2009

Happy mama


Gabe is doing really well. He is off high flow oxygen and now on just 1/8 liter of regular oxygen. He's been pretty cranky today since he is adjusting to being off all his sedation drugs. We are out of ICU and now on cardiac step down. It's amazing how things can turn around in one week's time.

Thursday, October 15, 2009

post op day 14








Gabe is extubated! It's been about an hour and a half and he's doing pretty well on the high flow oxygen. He was wide awake and ready when they came in to pull the tube. He was almost smiling. They pulled the tube, he coughed a couple times and that was it....totally different picture from Sunday. They'll watch him closely today. They took his catheter out. They'll take the right atrial line out tomorrow. That means he'll just have monitors, tube feeds, PICC line and an arterial line and I"ll finally get to hold him. He seems so happy now. We'll still have to monitor his work of breathing and see what (if anything) needs to be done with the tracheomalacia. We need to get him off high flow oxygen. At least he's off the ventilator now.

Monday, October 12, 2009

Hoping for Thursday


Sorry to vent earlier. I'm feeling alittle better now. Gabe is awake and seems comfortable so they haven't had to sedate him much. He was looking at me and looking at his lights and it reminded me how cute he was. This is the most awake he's been in 12 days. Little guy knows how to make mom feel better.

63 out of the past 101 days in the hospital (43 straight)

The scope today showed that Gabe's airway is really swollen and raw down to the cartilidge. The ENT doc said that swelling of this extent is related to the intubation tube being too large. This is extremely frustrating. We voiced our concerns to the surgeon and again to the Cardiology Attending. The Attending said that he thinks they chose to use a 3.5 instead of a 3.0 endotracheal tube b/c they wanted to make sure it didn't have a leak and be too small and lead to an unstable airway immediately after heart surgery. I personally think that is a little far fetched since a 3.0 gave him a perfectly solid fit 2 weeks earlier for his Gtube surgery and he had hardly grown between then and heart surgery. I'm having a hard time with it. I'm really hoping someone's error in judgement doesn't lead to a long term consequence. I'm sure they meant well in making the decision of a larger tube in a floppier airway, but it was the wrong one for my son. In the mean time, they're giving him steroids and antibiotics in hopes to extubate on Thursday. He has a 2.5 ET tube in. They purposely wanted it to be a little smaller so it's not rubbing up against the raw tissue around it. The down side to a smaller tube is you can hear a hoarse cry when he's upset. Hopefully the swelling will be down for Thursday. I don't know if I"ll be able to be in the room for it this time. I'm so sick of Gabe being sick.

Sunday, October 11, 2009

set back

They pushed Gabe's extubation back till today due to his heavy secretions. They tried this morning and it was not successful and they had to reintubate. His trachea was so swollen he couldn't get air through. Found out they put a 3.5 tube down during surgery when he measured more of a 3.0 and that caused his trachea to swell. This along with the tracheomalacia was a bad combination and he couldn't ventilate. He turned purple and desated. Codes are not fun. they were able to easily reintubate and he's back on the ventilator now. The good news is his lungs are fine and his heart is fine. Now we just have the trachea and larynx to work with. They are going to do another scope tomorrow to check out the swelling. They may put in a balloon and inflate it to expand some of the tissue. They will also suck out all the secrections and scrape away some extra tissue. They are going to give him steroids to help with the swelling and hopefully try to re-extubate mid week. What a morning....

Thursday, October 8, 2009

Post op day 7



Gabe is progressing slowly. The biggest set back over the past few days has been fevers. They have done cultures and found that a small amount of Klebsiella is growing in his ET tube. They are giving him antibiotics. Gabe has done well on his CPAP trials today and they are hoping to extubate tomorrow. His CO2 is a little high. They're trying to keep his bicarb in check while giving him the right amount of diuretics. They have weened him off nitric oxide, epinephrine, Nipride, TPN/Lipids, and turned down his Milrinone, Fentanyl and Versed. He is getting fed through his Gtube again. His oxygen saturations stay high overall unless he needs to be suctioned or is really mad and clamps down. His secretions are disgustingly thick. His ventricles are looking better, even without the cardiac meds which is reassuring. He cries sometimes and it's pitiful b/c you see his crying face, but he's not making any sound b/c of the ventilator. Hopefully tomorrow I'll get to hold him after he's extubated. I really hope extubation goes well tomorrow.

Because it is National Down Syndrome Awareness Month, here are some facts about Down Syndrome:
Down Syndrome (Trisomy 21) occurs in 1 out of 733 births.

There are more than 400,000 people living with Down syndrome in the United States

Down syndrome occurs in people of all races and economic levels

Down syndrome happens at conception, usually not hereditary and has nothing to do with environmental factors or parents' activities before or during pregnancy

The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80 percent of children with Down syndrome are born to women under 35 years of age

People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory, eye, and ear problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now very treatable and over 50% of individuals with Down Syndrome live into their 50's and much older.

I don't mean to go off on a rant about being politically correct, but this one is important to me. It is not polite to refer to these individuals as Down's babies. Down Syndrome does not define them. They are babies with Down Syndrome. Also, please do not use the word "retarded". It is hurtful. When we first found out the Gabe was going to be a baby with Down Syndrome, one of my biggest fears was what would I say if someone made fun of him. What would I say if someone called him retarded. Hopefully if people know that this is not a nice word, I won't have to.

Monday, October 5, 2009

October is Down Syndrome Awareness Month

I copied the following poem and link from some of the other blogs I read. I had to share the wealth. Justin and I are going to try to make it to the Buddy Walk on Saturday depending on how the baby is doing.

Down Syndrome Creed
My face may be different but my feelings the same
I laugh and I cry. I take pride in my gains.
I was sent here among you to teach you to love,
As God in the Heavens looks down from above.
To Him I’m no different; His love knows no bounds
It’s those here among you in cities and towns
That judge me by standards that man has imparted
But the family He’s chosen will help me get started.
For I’m one of His children so special and few
That came here to learn the same lessons as you.
That love is acceptance; it must come from the heart.
We all have the same purpose though not the same start.
The Lord gave me life to live and embrace
And I’ll do it as you do - just at my own pace.



Wedding Link: http://andycamphotovideo.com/scarritt-bennett/josh-bernadettes-wedding-at-vanderbilts-scarritt-bennett-chapel-in-nashville/

post op day 4




I feel like Gabe has made alot of progress today. His ECHO showed great improvement with his ventricles and the repair looks great. He has "mild to trivial" amount of leaking around his mitral valve. His chest tube and left ventricular wire came out today. They also started giving him very tiny amounts of formula through his Gtube. His heart rate is up the 160's ish which is something they are watching. He has a little bit of a temperature, so that may make his heart rate go up. They are trying to cool off the room some now. If that doesn't help, they'll draw blood cultures again. His Co2 creeps up above 50 sometimes when he starts to wake up (we want it below 50, means he's not working too hard to breath) because he fights the intubation tube. We will hopefully ween off the nitric oxide and get the oxygen down low tomorrow and extubate on Wed. Here's to progress.

Saturday, October 3, 2009

post op day 2


Gabe is doing a little better today. We had a scary desat in his oxygen levels last evening and they had to bag him some. They put him on some nitrous oxide to help with his pulmonary hypertension. His fever broke. Throughout the night, he stayed stable. They are weening his oxygen down a little and letting him have one full "good day" before they touch anything else. His left ventricle has improved some and is now mild to moderately diminished in function instead of severely diminished. Gabe has required lots of medications to keep him sedated. This happens alot in babies with Down Syndrome...they're such fighters they fight off sedation. His heart rate dropped to the low 100's which is now a little too low. They're watching it close and think it may be this way due to him getting so much sedation. Poor little guy...what a fight he's going through. I just want to hold him.

Friday, October 2, 2009

post op day 1


Today has been pretty hard. Gabe developed a fever over night and his heart rate elevated to 200. His torso is warm, but his fingers and toes are freezing. They did an ECHO and his mitral valve isn't leaking much, but they did notice that his left ventricle isn't squeezing up to par. This means that his blood isn't getting pumped out to his extremities very well and his heart rate is high to compensate for this. The fever can be fairly common post op. There isn't much that can be done for the left ventricle other than continue on the medications they're giving him and give him time to heal. He starts to wake up at times and gets mad, but that's kind of the extent. They will leave him sedated for today and hope things improve for tomorrow.

Thursday, October 1, 2009

post op




The surgery took about 5 hours. The nurse working with Dr.Manning came out to give us updates every hour. We met with the doctor afterwards and he said everything went well. The hole in Gabe's heart was pretty massive. He was able to patch it up very easily. The valves were a little more difficult to repair and he had to go back and add another 2 stitches due to some initial leaking, but he was happy with the result. He actually came in the room smiling which is always a good sign. They will be keeping Gabe sedated till tomorrow afternoon to give him some time to heal and recover. They will try to wake him up some tomorrow and do some ventilator tests to see if they can extubate tomorrow afternoon. His blood pressure is a little high now and they are giving him so medication for it. So far, no major curve balls have been thrown. He has his PICC line, arterial line, peripheral IV, brain oxygen monitor, intubation line, chest tube, direct heart lines, and catheter. He also has pacemaker wires in place just in case, but his heart has been pacing well on its own so far. The next 2 days will be pretty critical. We should be able to tell by early next week any lung or trachea issues that are leftover if there are any low oxygen levels or work of breathing.




Special thanks to Kelly for organizing Gabe's Buddy Walk and bringing us cookies from Max and Erma's today. Go Team Cash!

pre-op



We got to the hospital early this morning to hold
Gabe and tell him what a brave boy he was. We even sang a little "Eye of the Tiger". We walked down to surgery with him and then had to kiss him good luck. There were tears involved. Then we waited.....


It's Over!!!

This is Justin. I'm just posting to let everyone know that the baby is out of surgery and it was successful. Michelle will post with more details later. Thanks for all your support!