Monday, November 28, 2011
We're Moving!
Just a quick note to let you all know that we're moving from this blog over to our regular family blog. You can catch updates about Joshua as well as all the latest news of our family here: Skipping Stones
Saturday, October 29, 2011
Happy Man
Tonight Dave was making funny sounds at Joshua and these are the faces he made. It is so neat to see him becoming more and more animated each day!
Thursday, October 6, 2011
Swallow Study
We left early this morning to take Joshua to Atlanta for his swallow study. When he would drink a bottle of regular formula, he would often choke and gag and it would take forever to get him to drink 4 oz. I had read (and heard) from multiple sources that it shouldn't take more than 30 mins. to finish a bottle. Also, since Joshua had a heart defect (and surgery), it would not be in his best interest to be taking over an hour to finish a bottle. As the speech therapist said again today, drinking a bottle may not look like work, but for him it is like running a marathon.
We went to radiology and they had him sit in a little bucket type seat, and tied what looked like a sheet around him. On the left of him was a large metal plate, and they pulled another metal plate to the right of him, so he was boxed in. I stood in front of him and first fed him some barium the consistency of regular formula while they watch a x-ray video of him swallowing. It was interesting because the barium showed up black on the x-ray so you could really see where it was going. The speech therapist made a couple of faces and said that he had some "deep pens" on swallowing. This stands for deep penetrations, which means that when he swallows, some of it goes way down into his airway, hitting or almost hitting his voice box and then bounces back out and finally goes down his esophagus. You can imagine that that would cause some gagging and choking!
Even though he didn't aspirate while the test was being done, the speech therapist said she believes he does do it sometimes, especially when he is more tired. She then gave him a small amount of thickened barium. She could tell that although he took fewer sips, he took more into his mouth this time and it also did not go "down the wrong way". She sent us home with a couple starter kits of a thickener called Simply Thick and told us we should order some today so that it will arrive by the time we run out of our starter kits. Simply Thick is a gel made from xanthan gum, a thickener used in lots of foods. For instance, it was an ingredient in my sunflower seed packet that came with my salad at Chick-Fil-A (who knew)! It has no taste and adds no calories. I make up a bottle of regular formula, then squeeze the right amount of the gel into the bottle and shake it all up. It looks like runny yogurt, or a yogurt smoothie. So far, he seems to be taking to it well. Thankfully, I had a large number of different types of bottles at home in my attempt to find one that would stop the gagging, so we found one that works.
We are going to see if insurance will cover the cost of the thickener since it was medically necessary, as well as not cheap! The speech therapist said to keep him on it for 8 or so weeks, then we can try to experiment and see how he does with regular formula. She suggested that we come back in 8-12 weeks for a follow up study, but we don't know if we'll do that. If we feel he needs it, we will, but it is a long trip and really wears us out by the end of the day!
I sort of wish I had taken photos of him at the swallow study, but then I feel weird snapping photos in all sorts of odd locations! :)
We went to radiology and they had him sit in a little bucket type seat, and tied what looked like a sheet around him. On the left of him was a large metal plate, and they pulled another metal plate to the right of him, so he was boxed in. I stood in front of him and first fed him some barium the consistency of regular formula while they watch a x-ray video of him swallowing. It was interesting because the barium showed up black on the x-ray so you could really see where it was going. The speech therapist made a couple of faces and said that he had some "deep pens" on swallowing. This stands for deep penetrations, which means that when he swallows, some of it goes way down into his airway, hitting or almost hitting his voice box and then bounces back out and finally goes down his esophagus. You can imagine that that would cause some gagging and choking!
Even though he didn't aspirate while the test was being done, the speech therapist said she believes he does do it sometimes, especially when he is more tired. She then gave him a small amount of thickened barium. She could tell that although he took fewer sips, he took more into his mouth this time and it also did not go "down the wrong way". She sent us home with a couple starter kits of a thickener called Simply Thick and told us we should order some today so that it will arrive by the time we run out of our starter kits. Simply Thick is a gel made from xanthan gum, a thickener used in lots of foods. For instance, it was an ingredient in my sunflower seed packet that came with my salad at Chick-Fil-A (who knew)! It has no taste and adds no calories. I make up a bottle of regular formula, then squeeze the right amount of the gel into the bottle and shake it all up. It looks like runny yogurt, or a yogurt smoothie. So far, he seems to be taking to it well. Thankfully, I had a large number of different types of bottles at home in my attempt to find one that would stop the gagging, so we found one that works.
We are going to see if insurance will cover the cost of the thickener since it was medically necessary, as well as not cheap! The speech therapist said to keep him on it for 8 or so weeks, then we can try to experiment and see how he does with regular formula. She suggested that we come back in 8-12 weeks for a follow up study, but we don't know if we'll do that. If we feel he needs it, we will, but it is a long trip and really wears us out by the end of the day!
I sort of wish I had taken photos of him at the swallow study, but then I feel weird snapping photos in all sorts of odd locations! :)
Monday, October 3, 2011
Hello, Again!
It's hard to believe it has been 2 months since we last updated this blog. It feels like the time has flown by. Mainly, it has been filled with appointments of every shape and sort: pediatrician, pediatric cardiologist, and physical therapist. The PT came to our house to evaluate Joshua. She was really impressed with his muscle tone and coordination. She did suggest using a rolled up towel under his chest for more support while he's on his belly. You will see from the photos how well that worked out. :)
He has a referral to see a pediatric nephrologist, due to one kidney being slightly larger than the other. They want to monitor it, but it wasn't anything that was of a huge concern right now. Other things on the horizon are a visit to the Emory University Down syndrome Clinic this month, another hearing test in a couple months, and a thyroid check at 6 months,too, I believe. Sometimes it is incredibly hard to keep everything straight. Our calendar is filled in, mostly for Joshua! He and I are also seeing a chiropractor to get adjusted.
This has been our life for the past 3 or so months, with very little change. The feeding issue has been a huge one for quite a while, taking up many of the hours in the day. Joshua had an NG tube as a fairly permanent fixture to his face since early July. Once he started get more lively, shall we say, he would usually pull the tube out at least once a day. Dave or I would get the honors of putting it back in, which was never very fun. This past Tuesday, however, Joshua pulled it out and the sticky tape that held it onto the side of his face was also coming off, so I decided to do an experiment and see how he'd do with straight bottle feedings. I was able to feed him just with bottles, BUT it would take 1-1.5 hours per feeding (a 4 oz. bottle). Everything that I read stated a feeding should really take no more than 30 mins, so I knew something wasn't right. He'd also gag, choke, arch his back, and move around so much that it was really hard to feed him.
We decided to call the pediatrician and see if we could get Joshua in to be seen this past Friday. There was an appointment, and I went in with a written list of symptoms, knowing how precious little time you get with a doctor to lay everything out. I mentioned the swallow study that was recommended when he was discharged from the hospital, but that we didn't have done at the time, and the pediatrician agreed it was probably time to have that done now. He also gave me a couple cans of Enfamil A.R. formula, which is thickened with rice starch to see if it'd help Joshua. I was so desperate for feeding time to be shortened and for us both to be happier about it, that I made up a bottle for him in the car right after the appointment. He drank it in a bit less than 30 mins! I was so happy and proud of him! So far, he has still been taking just bottles and tomorrow will make one week that the NG tube has been totally out. He has been drinking his bottles much more quickly now, usually between 25-40 mins. The gagging and choking that has woken us up in the middle of the night has pretty much stopped, too. I am hoping and praying that this will be the answer, although it does seem to be causing some constipation. We're watching that, and if it doesn't clear up in a week or so, will ask if we should stop the new formula and try something else. I do know that his formula will have to be thickened, as the regular formula was too thin for him and caused all the reflux problems and long feeding times. Thankfully, there are other thickeners that can be added to his regular formula other than rice starch, so if this formula doesn't work, we have other options. We also add his Zantac directly to his bottle in the morning and evening. He was used to getting that by his tube, so never had to taste the vile liquid. The liquid is also thin, so it would make him gag and throw that up along with some formula. When it is in his bottle, he doesn't even know and it all gets down.
So, yes, the pump just sits in the room, staring at us. No more annoying beeps and cleaning out the bag multiple times a day. We are keeping all the things around for a little while longer, though, just in case. If he isn't gaining weight, then the pediatrician wants him to go back on the tube, but I don't see why he wouldn't gain weight if he is drinking all of his bottles nicely now. It does bring a bit of peace back to the household, and it is one step closer to getting into a good groove.
Well, without further ado, here are the things everyone waits for. The photos! :)
He has a referral to see a pediatric nephrologist, due to one kidney being slightly larger than the other. They want to monitor it, but it wasn't anything that was of a huge concern right now. Other things on the horizon are a visit to the Emory University Down syndrome Clinic this month, another hearing test in a couple months, and a thyroid check at 6 months,too, I believe. Sometimes it is incredibly hard to keep everything straight. Our calendar is filled in, mostly for Joshua! He and I are also seeing a chiropractor to get adjusted.
This has been our life for the past 3 or so months, with very little change. The feeding issue has been a huge one for quite a while, taking up many of the hours in the day. Joshua had an NG tube as a fairly permanent fixture to his face since early July. Once he started get more lively, shall we say, he would usually pull the tube out at least once a day. Dave or I would get the honors of putting it back in, which was never very fun. This past Tuesday, however, Joshua pulled it out and the sticky tape that held it onto the side of his face was also coming off, so I decided to do an experiment and see how he'd do with straight bottle feedings. I was able to feed him just with bottles, BUT it would take 1-1.5 hours per feeding (a 4 oz. bottle). Everything that I read stated a feeding should really take no more than 30 mins, so I knew something wasn't right. He'd also gag, choke, arch his back, and move around so much that it was really hard to feed him.
We decided to call the pediatrician and see if we could get Joshua in to be seen this past Friday. There was an appointment, and I went in with a written list of symptoms, knowing how precious little time you get with a doctor to lay everything out. I mentioned the swallow study that was recommended when he was discharged from the hospital, but that we didn't have done at the time, and the pediatrician agreed it was probably time to have that done now. He also gave me a couple cans of Enfamil A.R. formula, which is thickened with rice starch to see if it'd help Joshua. I was so desperate for feeding time to be shortened and for us both to be happier about it, that I made up a bottle for him in the car right after the appointment. He drank it in a bit less than 30 mins! I was so happy and proud of him! So far, he has still been taking just bottles and tomorrow will make one week that the NG tube has been totally out. He has been drinking his bottles much more quickly now, usually between 25-40 mins. The gagging and choking that has woken us up in the middle of the night has pretty much stopped, too. I am hoping and praying that this will be the answer, although it does seem to be causing some constipation. We're watching that, and if it doesn't clear up in a week or so, will ask if we should stop the new formula and try something else. I do know that his formula will have to be thickened, as the regular formula was too thin for him and caused all the reflux problems and long feeding times. Thankfully, there are other thickeners that can be added to his regular formula other than rice starch, so if this formula doesn't work, we have other options. We also add his Zantac directly to his bottle in the morning and evening. He was used to getting that by his tube, so never had to taste the vile liquid. The liquid is also thin, so it would make him gag and throw that up along with some formula. When it is in his bottle, he doesn't even know and it all gets down.
So, yes, the pump just sits in the room, staring at us. No more annoying beeps and cleaning out the bag multiple times a day. We are keeping all the things around for a little while longer, though, just in case. If he isn't gaining weight, then the pediatrician wants him to go back on the tube, but I don't see why he wouldn't gain weight if he is drinking all of his bottles nicely now. It does bring a bit of peace back to the household, and it is one step closer to getting into a good groove.
Well, without further ado, here are the things everyone waits for. The photos! :)
Watching Lassie with Stephen and the rest of the family.
This is what happens when I ask Sarah to give Joshua a pom pom to look at!
Little Man.
Josha Bean, as the kids call him. :)
Is that the beginning of a smile?
I like being on my belly!
That lady from physical therapy said I should try being propped up on a towel to strengthen my muscles, but I don't know...
I think I'm slipping...
I don't need that old towel!!
Making an important phone call...
Such a big guy!
Look at the red hair!
Matthew and Joshua.
The kids found our bag of winter hats and mittens. The only thing to do in middle GA with them is dress up, so they found one and stuck it on Joshua. Poor kid.
Best buds.
Timo and Joshua just relaxing.
Look at those legs!
Joshua just being himself...sweet.
You think I am sleeping, but...
Peek-A-Boo! I am playing possum.
:)
Chicken Legs!
Joshua with friends in his crib.
Rachel and Joshua, having deep conversations.
Rachel showing Joshua a Cookie Monster game. :)
Wednesday, July 27, 2011
Feeding- A Day In Our Life...
We thought you all might like to see how feedings work for Joshua with the NG tube. We do this after we've attempted to give him milk in a bottle first. Here is the pump, bag, and tubing as it looks hanging from the pole.
A close up of the pump. It is very small, but makes very loud beeps!
Here is a close up of Joshua with his NG tube. You can see the yellow end with two caps. We use this for his tube feedings, as well as for giving his medicines.
To start the feed, we pour the milk into the bag, turn on the machine, and start to prime it. This means that we stand there and hold the "prime" button until milk fills the entire length of the tube, from the bag to the red end of the tubing. Once that is done, we need to check placement.
These are the tools of the trade: the stethoscope and the syringe. To test placement with the stethoscope, the round end is placed on Joshua's belly and the syringe filled with about 1mL of air is attached into the yellow end of the NG tube. When pushed, you should hear a "swoosh" sound in his belly.
Method #2 of checking placement: using the syringe, we have to pull up on it to see if any stomach contents come back up. When we see that, that is an indication that the tube is in the right spot. Now, we're ready to attach the primed tubing to the NG tube.
Here, the tube is primed full of milk and is now attached to the end of Joshua's NG tube, ready to go.
Here is Joshua in his crib with the feeding bag and tube working. The pump can be adjusted to take as long or short as you want for the amount of milk to go through the tube and into the baby. Right now, it takes him about 30 mins. to finish 50mL of milk, which is a little over 1.5 ounces. This is not counting the 30-40 mins. it takes for us to get about 20-30mL into him beforehand...So, one feeding can take 1 hour- 1.5 hours! When it is done, the pump will beep until it is paused or shut off and will say "NO FOOD".
After the remainder of the milk has been primed into Joshua, we take the red end of the tubing off and have to flush the line. This means we take up about 1mL of water into the syringe, attach the syringe to the yellow end of his NG tube, and push the water into him, flushing down any remaining bits of milk so that he gets all of his nutrition. The yellow end must then be recapped to prevent any germs, etc, from getting down to his stomach.
We then hook the tubing over the faucet in our bathroom, fill the bag with warm water, and prime it again. We first send the water through, which pushes the little bits of leftover milk/formula out and cleans it. Then, we dump out any water left in the bag, and prime it again, tipping the bag to the side, which sends air through and fully cleans out the tubing. Rinse and repeat 6-7 times a day!
Tuesday, July 19, 2011
First Day Back to Work
Monday was my first day back to work and Michelle’s first day alone with all 6 kids! (I’m pretty sure that I had the easy part) All is going well with Joshua. He averages about 20 ml orally each feeding during the day and gets the rest by tube. Michelle and I are still very sleep deprived.
We’re very thankful to everyone who has brought meals and those who continue to bring meals…it’s a great blessing. Also thanks to those who have helped out with the kids.
We’re very thankful to everyone who has brought meals and those who continue to bring meals…it’s a great blessing. Also thanks to those who have helped out with the kids.
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