We're back from UNC Hospital and unfortunately, there's been no change in Ethan's swallowing since our last study back in October. :-( Thanks for your prayers, I guess God has better plans than what I was praying for. Needless to say, I am very discouraged by the study results. But the good news is that since Ethan doesn't have his final heart surgery for a couple of years, that we can be "risky" as the speech therapist called it today, and try giving Ethan one un-thickened bottle a day for a couple of weeks. If he doesn't seem to get pneumonia, or bronchitis or any other kind of lung infection then we will be able to try 2 un-thickened bottles a day!
As soon as we find our memory card for our camera, we'll be able to post some new pictures of Ethan so bear with us and pray that we find it soon!
Showing posts with label swallow study. Show all posts
Showing posts with label swallow study. Show all posts
Tuesday, February 26, 2008
Monday, February 25, 2008
Swallow Study Tomorrow
One more update... I've got to take Ethan back to UNC tomorrow for another swallow study. This will be his third time doing the study so I'm really asking for a lot of prayer that he will pass the test this time around. It's routine to do a barium swallow study on heart surgery patients shortly after surgery (Ethan had his first study about 2 weeks after surgery) to see if there was any nerve damage from the surgery since the heart is so close to the nerves that affect swallowing and aspirating. We were going to wait and have Ethan's 2nd swallow study around the time of Ethan's 2nd surgery, but I was just so impatient and Ethan's eating time had improved so much that we ended up having his 2nd swallow study back in October, when Ethan was 2 months old. Now that he's 6 months old and has had his 2nd surgery, we're able to do a 3rd study. Ethan came so close to passing his 2nd study, so please join us in prayer that he can definitely pass this time around.
In case you're just joining our blog or in case you forgot what this swallow study reveals, here's a quick recap. I believe there are different types of swallow studies so in the swallow study that Ethan does, he is given a bottle of barium to drink while he gets an x-ray done of his throat and chest. The x-ray technician watches closely to make sure that Ethan swallows the liquid down his throat and into his stomach, without any liquid silently aspirating (being swallowed into his lungs without him coughing). Ethan will pass if he doesn't silently aspirate.
When Ethan had his first study done, it was taking him about 30 minutes to drink about an ounce of his bottle and he was getting too tired, which was part of the reason for the aspiration. I had the 2nd study done because he was up to drinking 4 ounces in under 3 minutes. Now, at 6 months old, Ethan drinks 5-6 ounces in 3 1/2 minutes. The swallow study lasts for about 20 minutes, which I don't think is very accurate because he never takes that long for a bottle, but I learned that they push the babies that long to "prove" that it's still possible for him them to silently aspirate.
I am more nervous about this swallow study than about both heart surgeries combined. I really want Ethan to pass so that we don't have to bother with thickening his bottles any longer. But more importantly, I want him to pass so that we don't have to worry about him silently aspirating in the event that he gets another stomach bug (like he had the day after we came home from the hospital last month) and has to take Pedialyte, which I can't seem to get anyone to tell me how to thicken. Also, if we don't have to thicken his drinks, then I'll be able to start giving him more variety of liquids like juice and water.
So, (as if I haven't said this enough already) please join us in prayer today and tomrrow that Ethan can pass his study finally. Our appointment is at 2:30 on Tuesday, 2/26 at UNC. Thanks in advance for your prayer and support!
In case you're just joining our blog or in case you forgot what this swallow study reveals, here's a quick recap. I believe there are different types of swallow studies so in the swallow study that Ethan does, he is given a bottle of barium to drink while he gets an x-ray done of his throat and chest. The x-ray technician watches closely to make sure that Ethan swallows the liquid down his throat and into his stomach, without any liquid silently aspirating (being swallowed into his lungs without him coughing). Ethan will pass if he doesn't silently aspirate.
When Ethan had his first study done, it was taking him about 30 minutes to drink about an ounce of his bottle and he was getting too tired, which was part of the reason for the aspiration. I had the 2nd study done because he was up to drinking 4 ounces in under 3 minutes. Now, at 6 months old, Ethan drinks 5-6 ounces in 3 1/2 minutes. The swallow study lasts for about 20 minutes, which I don't think is very accurate because he never takes that long for a bottle, but I learned that they push the babies that long to "prove" that it's still possible for him them to silently aspirate.
I am more nervous about this swallow study than about both heart surgeries combined. I really want Ethan to pass so that we don't have to bother with thickening his bottles any longer. But more importantly, I want him to pass so that we don't have to worry about him silently aspirating in the event that he gets another stomach bug (like he had the day after we came home from the hospital last month) and has to take Pedialyte, which I can't seem to get anyone to tell me how to thicken. Also, if we don't have to thicken his drinks, then I'll be able to start giving him more variety of liquids like juice and water.
So, (as if I haven't said this enough already) please join us in prayer today and tomrrow that Ethan can pass his study finally. Our appointment is at 2:30 on Tuesday, 2/26 at UNC. Thanks in advance for your prayer and support!
Wednesday, February 6, 2008
Go Heels!
Ok, sorry for all of you who are not UNC fans, but I just had to put that out there. Besides already being Tarheel fans, we've got even more reason to be since we've spent so much time there in the past 10 months for prenatal checkups and all of Ethan's care before, during, and after his 2 heart surgeries.
Tonight's the big "battle of the blue" game between UNC (light blue team) & Duke (the dark blue team) - for those not from NC/don't keep up with college basketball. Below is a picture of Ethan, all decked out, ready to watch the game with Mommy tonight!
Tonight's the big "battle of the blue" game between UNC (light blue team) & Duke (the dark blue team) - for those not from NC/don't keep up with college basketball. Below is a picture of Ethan, all decked out, ready to watch the game with Mommy tonight!
Oh yeah, and`speaking of UNC, Ethan's got his first cardiologist appointment post-surgery tomorrow. The plan is to get his vitals (as usual) then do an echo (ultrasound of his heart) like we do about every other visit. Please pray things will look as good internally as he seems to be doing externally with healing. Usually UNC doesn't discharge their cardiac surgery patients until they have had an echo but since his oxygen sats were in the upper 80's, they decided not to do one just for the sake of doing one. That was encouraging news for us!
Also, our biggest request right now for Ethan is that we go back to UNC on Tuesday, 2/26 for another swallow study. We're really tired of thickening his bottles and we'd especially like to be able to start giving him juice. Also, when he was sick last week and the pediatrician had us give him Pedialyte, it made us nervous about him aspirating (swallowing it down his windpipe instead of down his throat - the whole reson we have to thicken his bottles in case you didn't know) the liquid.
Well that's about all for now. Sorry it's been a while since we posted pictures, we plan to get more up soon, now that we're all healthy again!
Friday, October 12, 2007
Swallow study at UNC
Well good news and bad news. Good news is that in the first 5 minutes of the swallow study (which is the normal amount of time Ethan spends drinking his bottle) Ethan did not aspirate at all! But the bad news is that they continued to watch him swallow for another 15 minutes and towards the end, he did start to silently aspirate. Therefore, the speech therapist (who performed the study) recommends that we continue doing the thickened bottle feeds until after his next surgery, when they will repeat the swallow study again. So I won't lie, I was EXTREMELY disappointed to hear about having to continue the thickened feeds - I walked out of there telling Dan that this news has ruined my entire day, and it was all I could do to fight back the tears. I hardly slept at all last night, I woke up every 1-2 hours and while I was awake, I prayed for Ethan to pass the swallow study with flying colors so we can start to have a little normalcy to our lives for once. Even though God chose not to answer my prayer the way I requested, I know we still made the right decision to do the swallow study this morning. As hard as it is to get the news that we are recommended to continue the thickened feeds, I know the speech therapist is just wanting to err on the side of caution. As I've said my entire life, "better safe than sorry". I just wish I didn't have to take my own advice and the advice of UNC.
Thursday, October 11, 2007
2 months old!
Hard to believe our little boy is 2 months old today! So much has happened in his life since he was born! Yesterday, we went to the pediatrician for his weekly weight check - he's now 11lb. 4 1/4oz. (5.13kg). That's only 5 oz. gained this week, as opposed to 9 oz. gained last week, but Nurse Kay at UNC said it's ok. His pulse ox this week has been between 73-81%, so it's slightly improved from last week. We also ordered a digital scale from ebay, that should be arriving in the next week or two, so hopefully we won't have to go weekly to the pediatrician for his weigh in any more. Also, with the home scale, we won't have to have a home nurse come weigh him - which was our other option, but our current home nurse doesn't have a digital scale (which UNC requires for the weekly weigh in) and no other home nurse company has a digital scale either, so home nursing is out of the question at this time (plus it was going to cost $102.95/visit).
Tomorrow morning at 8:30am we go back to UNC for another swallow study. Last swallow study was done about 6 weeks ago, and at that time, it was taking him 20 minutes to drink a 2 oz. bottle, and it was only the last couple of minutes where he started falling asleep when he was silently aspirating (swallowing the wrong way and not coughing). Well it only takes him 5 minutes to take a 3 oz. bottle now and he doesn't get tired or fall asleep so we think he's ok. He has the ability to cough, and it's rarely when he's eating so we think he's ok. If he passes, then we can take him off the thickened feeds and hopefully I'll be able to nurse him more often! Right now, I'm only allowed to nurse him once a day, and when he does nurse, he latches on right away and does great, although he falls asleep after about 10 minutes.
So today's prayer request is that the x-ray swallow study goes well tomorrow morning. Also, next week, we've got 2 appointments - next Wednesday after his weigh in, he'll have his 2 month checkup and also get his immunizations. Then next Thursday, we go back to WakeMed to see his cardiologist for his monthly heart checkup.
And, as promised, I finally have some new pictures of Ethan for your viewing pleasure! P.S. we'd love to hear from you. Please click on the comment link at the bottom of each blog entry to post a comment on our site!
Mommy & baby Ethan
Well I thought I could get more than one picture posted but I guess not. I'll try to post more later today.
Tuesday, August 28, 2007
Another day in PICU
Well another day has come and gone here in PICU. Ethan is still doing well, but there are still no beds available in CICC so we'll be here in PICU again tonight. We will do our best to get some new pictures of our sweet son on the blog soon. The nurse said he took all his feedings by bottle, no NG tube needed! This was a small answered prayer, but still an answered prayer none the less.
We did have a small setback again today. At 1pm he had a swallow study done (he was fed a bottle of barium and had an x-ray done at the same time to watch his swallowing pattern). I (Julie) got to feed him the bottle and Dan watched with the radiology tech and speech therapist (ST) as the liquid went down his throat. We learned that towards the end of his bottle feeding, he had one small silent aspiration episode (this means that when he swallowed, it went down his windpipe instead of his esophagus and he didn't cough it up). Therefore, the speech therapist ordered him to start having his feeds thickened. The two options are formula thickened with rice cereal or breastmilk thickened with a really expensive thickening gel that can only be purchased online. He will have to stay on this eating plan for the next couple of months, until just before his next surgery when they'll do another swallow study. The ST said the silent aspiration is common for newborns who've had surgery and had to be intubated and that it is something that he should grow out of, so that's encouraging! Please be praying that he grows out of it sooner rather than later.
Another praise is that our friend's baby, Shelby, had her heart cath today and Dr. Stewart said it went well so she's scheduled to return in 2 weeks for her 2nd stage of surgery - The Glenn. Be praying for this family as they prepare mentally and physically for this next surgery. Shelby just turned 5 months old last week and her parents can hardly believe the time has come so quickly. We really enjoyed the quality time we got to spend talking with Shelby's mom last night and today. It's so encouraging to see Shelby doing so well - just looking at her, you'd never know anything was wrong on the inside! This was just the little boost of encouragement we needed to keep hanging in there a little bit longer.
We did have a small setback again today. At 1pm he had a swallow study done (he was fed a bottle of barium and had an x-ray done at the same time to watch his swallowing pattern). I (Julie) got to feed him the bottle and Dan watched with the radiology tech and speech therapist (ST) as the liquid went down his throat. We learned that towards the end of his bottle feeding, he had one small silent aspiration episode (this means that when he swallowed, it went down his windpipe instead of his esophagus and he didn't cough it up). Therefore, the speech therapist ordered him to start having his feeds thickened. The two options are formula thickened with rice cereal or breastmilk thickened with a really expensive thickening gel that can only be purchased online. He will have to stay on this eating plan for the next couple of months, until just before his next surgery when they'll do another swallow study. The ST said the silent aspiration is common for newborns who've had surgery and had to be intubated and that it is something that he should grow out of, so that's encouraging! Please be praying that he grows out of it sooner rather than later.
Another praise is that our friend's baby, Shelby, had her heart cath today and Dr. Stewart said it went well so she's scheduled to return in 2 weeks for her 2nd stage of surgery - The Glenn. Be praying for this family as they prepare mentally and physically for this next surgery. Shelby just turned 5 months old last week and her parents can hardly believe the time has come so quickly. We really enjoyed the quality time we got to spend talking with Shelby's mom last night and today. It's so encouraging to see Shelby doing so well - just looking at her, you'd never know anything was wrong on the inside! This was just the little boost of encouragement we needed to keep hanging in there a little bit longer.
Monday, August 27, 2007
2 weeks past surgery!
Today is a beautiful, though slightly overcast, day here in Chapel Hill. It's not too hot today, only in the mid 80's for a change, instead of the upper 90's! It's hard to believe that just 2 weeks ago today, Ethan had his heart surgery! We're so encouraged that he's been doing so well! Ethan had another good night last night, taking all his bottles by mouth! He has done pretty well with his daytime bottles too. His A-line was removed over the weekend, so that's one less line he's attached to, which is good. The down side is that now that the A-line has been removed (it's like an IV, except it's used to draw blood instead of give fluids), if they need to do any more blood work, they have to stick him with another needle.
Unfortunately for Little Ethan, they had to draw some blood this afternoon, right before his 4pm feeding. He made a big fuss about it, then was so upset that he had a hard time calming down enough to take his whole bottle. In fact, he spit nearly all of it back up and we had to finish the rest (about a third) by NG tube. His nurse said she learned to not do that again!
We also had speech come back today at 10am. As I forgot to update on Friday afternoon, not much was accomplished at today or Friday's speech visit. At both visits, they let me feed him and they just stood and watched. They said he was doing very well and wasn't giving off any stress signals, which is a good sign. Just to make sure things are going well on the inside, they want to do a swallow study tomorrow. They said it's painless, it's basically just an x-ray of him while he takes a bottle. His therapist, Jen, said I'm welcome to feed him his bottle as usual and they'll just x-ray him while he eats. Please pray that all goes well with the study tomorrow and that we can learn exactly what's going on while he takes a bottle.
As for moving to CICC, Dr. Stewart gave us the go ahead today, but there are no rooms available on CICC today so we'll be here in PICU another day, which is fine with us since we get more one-on-one attention down here. Also, speaking of CICC, our friend's baby, Shelby will be arriving tonight. She and her mom will be spending the night at the Ronald McDonald House tonight then Shelby will go to CICC tomorrow morning for her heart cath. We look forward to meeting Shelby and her mom tonight at Ronald McDonald and maybe they will get to come see Ethan tonight. It's so great to have some new friends who are just a few months ahead of us in this process!
Unfortunately for Little Ethan, they had to draw some blood this afternoon, right before his 4pm feeding. He made a big fuss about it, then was so upset that he had a hard time calming down enough to take his whole bottle. In fact, he spit nearly all of it back up and we had to finish the rest (about a third) by NG tube. His nurse said she learned to not do that again!
We also had speech come back today at 10am. As I forgot to update on Friday afternoon, not much was accomplished at today or Friday's speech visit. At both visits, they let me feed him and they just stood and watched. They said he was doing very well and wasn't giving off any stress signals, which is a good sign. Just to make sure things are going well on the inside, they want to do a swallow study tomorrow. They said it's painless, it's basically just an x-ray of him while he takes a bottle. His therapist, Jen, said I'm welcome to feed him his bottle as usual and they'll just x-ray him while he eats. Please pray that all goes well with the study tomorrow and that we can learn exactly what's going on while he takes a bottle.
As for moving to CICC, Dr. Stewart gave us the go ahead today, but there are no rooms available on CICC today so we'll be here in PICU another day, which is fine with us since we get more one-on-one attention down here. Also, speaking of CICC, our friend's baby, Shelby will be arriving tonight. She and her mom will be spending the night at the Ronald McDonald House tonight then Shelby will go to CICC tomorrow morning for her heart cath. We look forward to meeting Shelby and her mom tonight at Ronald McDonald and maybe they will get to come see Ethan tonight. It's so great to have some new friends who are just a few months ahead of us in this process!
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