Yesterday we went back to the cardiologist for a checkup. It had been 3 1/2 months so we were curious as to how Dr. Robinson thought Ethan's heart is doing. Ethan weighed in at 9.6 kg (21.1 lbs.) and measured 29 5/8 in. His blood pressure and oxygen saturation (o2) levels looked good - his o2 sat was at 82%, which is about where it should be and the same as it was when it was checked back in March at the last appointment. Dr. R also listened to Ethan's heart with his stethoscope and all seemed well but they still ordered an echocardiogram (echo) just to be sure.
Ethan was a very good boy for the echo technician - I told Dan that the only time I've even seen Ethan be so still is when he's asleep! The tech laughed and said it worked out good for him! Thanks to Ethan's cooperation, the tech was able to get some really good pictures of Ethan's heart and after Dr. R reviewed the pictures, we were told that Ethan's the best looking HLHS baby he's seen in a while! The RV (right ventricular) function looks really good and the atrial arch that was repaired during Ethan's 2nd surgery back in January is still wide open so we are very pleased! We don't go back again for another cardiologist visit until September and if all continues to look good, we will start going in 6 month increments!
Thank you Jesus for keeping our son so healthy and having good heart function and for using the wonderful staff at UNC Hospital to medically "fix" Ethan's heart as well.
Well thanks for checking in with us. I'm off to put Ethan down for his morning nap then it's off to Mimi's house (my mom) to go swimming!
Showing posts with label oxygen sats. Show all posts
Showing posts with label oxygen sats. Show all posts
Friday, June 27, 2008
Saturday, January 26, 2008
We're Home at Last!
We slept in this morning at Ronald McDonald House (RMH), had brunch there, then called Ethan's floor to check on him around 10:30am. His nurse said he did great all night long - with feeding and with his weaning off oxygen. He was completely off when we called, but still had the cannula tubing across his face, just in case. We got to the hospital around 11am and about an hour later his nurse got brave and took off the cannula and continued to monitor his oxygen sats. He managed to stay in upper 80's! Then the doctor came by and said Ethan was looking so great, that he felt comfortable discharging us if we felt comfortable taking him home! So it took a while to get discharge papers printed and we finally got out of there at 5:30pm.
We took Ethan back to RMH to pack up our belongings and clean up and check out. We were out of there by 6:30pm and began our hour-long commute back home. But first we had to stop by our pharmacy to get Ethan's prescription filled. Our pharmacy wasn't open, so we went across the street to try 2 others and they were both closed, they told us to go a couple miles down the road and we should find a 24-hour Walgreens. Do you have any idea how difficult to find a pharmacy that's open after 6pm on the weekends?!? Finally, after dropping off the prescription, waiting an hour, grabbing dinner, and picking up the prescription and then getting our dog at Dan's sister's house (in our neighborhood), we're home at last - 4 hours after leaving the hospital (it's normally only a 1 hour drive if we're driving straight from home to the hospital)!
Thank you, thank you, thank you for all of your prayers for us this past week, and even before then. We know God heard all your prayers and answered them on our behalf this week. On Tuesday, when we met with Ethan's surgeon after he was done with the operation, he told us to expect a 5-10 day recovery after this particular surgery, and sure enough, here we are on Day 5 and we have made it home! Ethan seems to be a quick healer - his first surgery we were told to expect 4-6 weeks recovery time in the hospital and we got out of there when he was exactly 4 weeks old - 2 days short of 4 weeks from his surgery date! I know that we wouldn't be where we are without God's grace to us and Ethan in giving him such a speedy recovery.
Even though we're home and Ethan's doing great, it still physically takes 6-8 weeks post-surgery for his sternum (breastbone) to completely heal so we will still have to be very gentle with him until then. We have a couple of post-op appointments in the next 2 weeks - 2 to see his pediatrician and one to see his cardiologist. Ethan's only on one medicine this time - Lasix (a diuretic to help keep draining off excess fluids in his body).
Our first post-op appointment will be on Monday so you may not here from us again until then. In the meantime, be praying for our friends in SC - Scott, Rebecca, Wyatt and Annabelle Butcher, they are scheduled to have a C-Section on Monday to deliver their little girl Anabelle that has been prenatally diagnosed with HLHS and will be having her first heart surgery next week. See link for Annabelle on right to follow their journey.
We took Ethan back to RMH to pack up our belongings and clean up and check out. We were out of there by 6:30pm and began our hour-long commute back home. But first we had to stop by our pharmacy to get Ethan's prescription filled. Our pharmacy wasn't open, so we went across the street to try 2 others and they were both closed, they told us to go a couple miles down the road and we should find a 24-hour Walgreens. Do you have any idea how difficult to find a pharmacy that's open after 6pm on the weekends?!? Finally, after dropping off the prescription, waiting an hour, grabbing dinner, and picking up the prescription and then getting our dog at Dan's sister's house (in our neighborhood), we're home at last - 4 hours after leaving the hospital (it's normally only a 1 hour drive if we're driving straight from home to the hospital)!
Thank you, thank you, thank you for all of your prayers for us this past week, and even before then. We know God heard all your prayers and answered them on our behalf this week. On Tuesday, when we met with Ethan's surgeon after he was done with the operation, he told us to expect a 5-10 day recovery after this particular surgery, and sure enough, here we are on Day 5 and we have made it home! Ethan seems to be a quick healer - his first surgery we were told to expect 4-6 weeks recovery time in the hospital and we got out of there when he was exactly 4 weeks old - 2 days short of 4 weeks from his surgery date! I know that we wouldn't be where we are without God's grace to us and Ethan in giving him such a speedy recovery.
Even though we're home and Ethan's doing great, it still physically takes 6-8 weeks post-surgery for his sternum (breastbone) to completely heal so we will still have to be very gentle with him until then. We have a couple of post-op appointments in the next 2 weeks - 2 to see his pediatrician and one to see his cardiologist. Ethan's only on one medicine this time - Lasix (a diuretic to help keep draining off excess fluids in his body).
Our first post-op appointment will be on Monday so you may not here from us again until then. In the meantime, be praying for our friends in SC - Scott, Rebecca, Wyatt and Annabelle Butcher, they are scheduled to have a C-Section on Monday to deliver their little girl Anabelle that has been prenatally diagnosed with HLHS and will be having her first heart surgery next week. See link for Annabelle on right to follow their journey.
Friday, January 25, 2008
Still on oxygen
Ethan wasn't doing well off oxygen - his sats dropped from the mid 80's to mid 60's almost right away so he's been back on .2 of oxygen since my last post this morning. He has to consistently be in the mid 70's-mid 80's in order for them to let us go home.
Also, we just asked his night nurse about whether or not Ethan's had an echo (ultrasound of his heart) since surgery and she said no. She said he is ordered to have one before we can go home so she said that should take place on Monday, but none of the other nurses or doctors we've seen today have mentioned anything about being required to have an echo before we go home and they all have seemed pretty confident that we should be able to get out before the weekend's over as long as Ethan is off oxygen. So please continue to pray hard that he can get off his oxygen and not have to wait around till next week just because of the echo.
Ethan has done well with eating this afternoon and evening. He's only missed one feeding of a 4 oz. bottle today, AND his afternoon nurse got us some baby food applesauce and spoon to try feeding him. I was afraid that if we waited too much longer, he might forget how to eat from a spoon since he hasn't had any spoon feedings since Monday, but he was actually excited to have some familiar food (he's still being fed his normal brand of formula - Enfamil Lipil with Iron but they're using the expensive pre-made 2oz. bottles that look like chocolate milk instead of white milk and it smells different so I'm guessing it tastes different too). The attention of his nurse didn't even distract him from eating his favorite solid food! I guess that's one advantage to having a boy - he loves food when he's in the mood!
Also, we just asked his night nurse about whether or not Ethan's had an echo (ultrasound of his heart) since surgery and she said no. She said he is ordered to have one before we can go home so she said that should take place on Monday, but none of the other nurses or doctors we've seen today have mentioned anything about being required to have an echo before we go home and they all have seemed pretty confident that we should be able to get out before the weekend's over as long as Ethan is off oxygen. So please continue to pray hard that he can get off his oxygen and not have to wait around till next week just because of the echo.
Ethan has done well with eating this afternoon and evening. He's only missed one feeding of a 4 oz. bottle today, AND his afternoon nurse got us some baby food applesauce and spoon to try feeding him. I was afraid that if we waited too much longer, he might forget how to eat from a spoon since he hasn't had any spoon feedings since Monday, but he was actually excited to have some familiar food (he's still being fed his normal brand of formula - Enfamil Lipil with Iron but they're using the expensive pre-made 2oz. bottles that look like chocolate milk instead of white milk and it smells different so I'm guessing it tastes different too). The attention of his nurse didn't even distract him from eating his favorite solid food! I guess that's one advantage to having a boy - he loves food when he's in the mood!
Thursday, November 15, 2007
November Cardiologist Checkup
Well it's hard to believe a whole month has passed since our last monthly checkup at the cardiologist office! Ethan still seems to be doing well. They did another echocardiogram (ultrasound of his heart function) and from what they could see, the right ventricle (RV) functions looks good and there's minimal leakage from the tricuspid valve (same as it's always been). Ethan's oxygen sats have been remaining in the 70's - low 80's (although we could only get the sat to read 58-62 at the office today but that's because they're machine is about worn out so they're going to order a new one) and he now weighs 6.0 kg (13 lb. 3.5 oz.) so Dr. Robinson is pleased with his growth and heart function.
Dr. Robinson also told us we can stop one of the heart meds - Digoxin once we run out (which we ran out last night!) and we can also stop the Lasix (diuretic). So we're just down to one heart med - Enalapril (2x/day) and baby aspirin (3x/week)! He also told us that it's time to start the ball rolling to get ready for the next heart surgery. The 2nd surgery usually takes place between 4-8 months old, based on the oxygen sats and Ethan's weight gain. He's right on track for both for now but we don't want to get caught off guard when the sats start to drop so we're going to go ahead and book the heart catheritization for December and plan on having the second surgery a few weeks later (sometime in January).
Now that we know a timeline for the 2nd surgery, and we're getting ready to head into cold/flu season, we have to be extra cautious about keeping Ethan healthy. He needs to be healthy for at least 2-4 weeks prior to the surgery so that there's less risk of infection so we will keep him isolated from the public as much as possible from now until his next surgery. We should hear back from Dr. Robinson's office before Thanksgiving for the date of the heart cath and we'll let you know the date so you can be praying. If you've been following us since Ethan's birth, you may remember that he had a heart cath the day before we got discharged, so at least we know a little bit about what to expect. He will be anesthetized and will probably be sleepy the rest of the day, but it will probably be an outpatient procedure if all goes well.
Thanks for your continued prayers! Also, we want to thank UNC Hospitals for all the great work and personal care and attention they have given us. Today is the NC Children's Promise Telethon/Radiothon to raise money for the UNC Children's Hospital where Ethan spent the first 4 weeks of his life and we want to thank everyone involved in donating today to help make the this Children's Hospital what it is. We are so blessed to live so close to such a fabulous facility! If there are any causes worth donating to this year, this radiothon would be my pick - just to be able to give back to the place that saved our sweet boy's life! Please consider donating if you have money to spare - even a few dollars will make a difference for them. http://www.ncchildrenspromise.org/radiothon.shtml or 1-866-9-NC-KIDS.
Dr. Robinson also told us we can stop one of the heart meds - Digoxin once we run out (which we ran out last night!) and we can also stop the Lasix (diuretic). So we're just down to one heart med - Enalapril (2x/day) and baby aspirin (3x/week)! He also told us that it's time to start the ball rolling to get ready for the next heart surgery. The 2nd surgery usually takes place between 4-8 months old, based on the oxygen sats and Ethan's weight gain. He's right on track for both for now but we don't want to get caught off guard when the sats start to drop so we're going to go ahead and book the heart catheritization for December and plan on having the second surgery a few weeks later (sometime in January).
Now that we know a timeline for the 2nd surgery, and we're getting ready to head into cold/flu season, we have to be extra cautious about keeping Ethan healthy. He needs to be healthy for at least 2-4 weeks prior to the surgery so that there's less risk of infection so we will keep him isolated from the public as much as possible from now until his next surgery. We should hear back from Dr. Robinson's office before Thanksgiving for the date of the heart cath and we'll let you know the date so you can be praying. If you've been following us since Ethan's birth, you may remember that he had a heart cath the day before we got discharged, so at least we know a little bit about what to expect. He will be anesthetized and will probably be sleepy the rest of the day, but it will probably be an outpatient procedure if all goes well.
Thanks for your continued prayers! Also, we want to thank UNC Hospitals for all the great work and personal care and attention they have given us. Today is the NC Children's Promise Telethon/Radiothon to raise money for the UNC Children's Hospital where Ethan spent the first 4 weeks of his life and we want to thank everyone involved in donating today to help make the this Children's Hospital what it is. We are so blessed to live so close to such a fabulous facility! If there are any causes worth donating to this year, this radiothon would be my pick - just to be able to give back to the place that saved our sweet boy's life! Please consider donating if you have money to spare - even a few dollars will make a difference for them. http://www.ncchildrenspromise.org/radiothon.shtml or 1-866-9-NC-KIDS.
Thursday, October 18, 2007
Cardiologist Checkup
All went well at the cardiologist today. Nothing too eventful to report. Dr. Robinson was pleased that Ethan's growing so well and that his oxygen sats are around 73-83%. With those sats, we didn't even need to have an echocardiogram done this time! Ethan has outgrown 2 of his medication doses so we were told to add .1 mL to keep up with his weight. We go back to see Dr. Robinson at WakeMed in Raleigh again on Nov. 15th. At that time, we'll start looking at when to schedule the 2nd stage of surgery (it probably won't be before Christmas!), based on Ethan's oxygen sats and his current weight. We'll know it's getting close to time to do the next surgery once his sats are steadily staying in the mid 60's to low 70's.
As for an update about our trip to the fair last night, we had a lot of fun. We ate way too much fried food - including the fried Coca-Cola (Julie's all time favorite drink!). For those of you who are as curious as we were about how they can fry Coca-Cola, basically it's a funnel cake batter whose liquid is Coca-Cola and then they serve it in a drink cup with Coca-Cola syrup and powdered sugar and whipped cream. Not very "Coke" flavored, but at least I can say I tried it! Ethan did well with his Grammy too. Despite having had his shots yesterday, he was pretty good while we were gone. Over night though, he was awake every 2 hours just fussing and crying (he has been normally sleeping 4-6 hours/night) so I (Julie) gave him some Tylenol and he finally went back to sleep until we had to get up for the cardiologist appointment.
This afternoon after lunch, Ethan ran a 1 degree fever so I gave him more Tylenol and tried to have him take a nap but he cried for over 20 minutes once I put him in bed. I finally decided he was not going to cry himself to sleep so I picked him up and he fell right asleep - he just needed his mommy. :-) Since he's not feeling well from the shots, I just let him sleep on me for as long as he could (about 2 hours) then it was time to feed him again. It was nice to get the extended cuddle time with him!
Hopefully he'll sleep well tonight and he can have a better day tomorrow. Dan and Ethan just went to bed and I'm headed to bed too. Thanks for your continued prayers.
As for an update about our trip to the fair last night, we had a lot of fun. We ate way too much fried food - including the fried Coca-Cola (Julie's all time favorite drink!). For those of you who are as curious as we were about how they can fry Coca-Cola, basically it's a funnel cake batter whose liquid is Coca-Cola and then they serve it in a drink cup with Coca-Cola syrup and powdered sugar and whipped cream. Not very "Coke" flavored, but at least I can say I tried it! Ethan did well with his Grammy too. Despite having had his shots yesterday, he was pretty good while we were gone. Over night though, he was awake every 2 hours just fussing and crying (he has been normally sleeping 4-6 hours/night) so I (Julie) gave him some Tylenol and he finally went back to sleep until we had to get up for the cardiologist appointment.
This afternoon after lunch, Ethan ran a 1 degree fever so I gave him more Tylenol and tried to have him take a nap but he cried for over 20 minutes once I put him in bed. I finally decided he was not going to cry himself to sleep so I picked him up and he fell right asleep - he just needed his mommy. :-) Since he's not feeling well from the shots, I just let him sleep on me for as long as he could (about 2 hours) then it was time to feed him again. It was nice to get the extended cuddle time with him!
Hopefully he'll sleep well tonight and he can have a better day tomorrow. Dan and Ethan just went to bed and I'm headed to bed too. Thanks for your continued prayers.
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.
Wednesday, September 26, 2007
One Month Checkup & Lactation Consultant
Yesterday was a long day so forgive me for no post. The pediatrician appointment went pretty well. We saw a different doctor, who was a lot more thorough and I felt more comfortable with. Ethan seems to be doing well over all, and no immunizations were given! He'll get those at his 2 month checkup, along with the start of Synagis - a monthly shot during fall and winter, to prevent catching RSV (for more information, visit synagis.com). His pulse ox was good - 82% and he weighed in at a whopping 10lb. 3 1/4oz. - a whole 2 pounds heavier than his birth weight!
Also, 2 days ago I mentioned that Ethan was awake almost the entire day and I had hoped he'd sleep well that night and he did - 5.5 hours! But last night was a different story, he was asleep most of the day and then woke up every 2 hours. He's slept about half the day today, so we'll see how tonight goes! :-)
Today was another big day, first we went by my office for a visit with my co-workers and a meeting about the change in insurance that takes effect in October. Then we went to a different branch of Ethan's pediatrician's office to meet with a lactation consultant. To recap, with Ethan's heart problem he burns calories faster so all his feeds have had to be fortified with extra calories - by adding a couple teaspoons of formula to any bottle we give him. As a result, I haven't been allowed to breastfeed, so I've had to exclusively pump. Well as any mom reading this knows, pumping's not the most fun thing in the world, and it takes extra time to pump, then take the time to bottle feed. It's hard to get anything else done during the day! Therefore, I'm getting very frustrated and decided it was time to seek help! My main frustration has been that each pumping session only produces half the amount of milk that Ethan takes at each feeding so I feel like I'm not able to provide, therefore stressing myself out and that's not helping my supply at all!
As a first time mom, this feeding issue has been extremely difficult for me emotionally and physically. I want the special bonding time of nursing that most women get, and the cardiologist has said I can try breastfeeding once a day max, but that he needs the extra calories the rest of the time. Also, with bottle feeding, we know exactly how many ounces he's eating. Plus, because he failed the swallow study a month ago, all his feeds have to be thickened so he doesn't aspirate (let the food go down his windpipe instead of down his throat into his stomach). So at our visit today, Michelle tried to teach Ethan to latch on, but he's spoiled - a bottle is much faster to feed from than me! She has given me tips to try to get Ethan to latch on, which I will try daily, and she's also going to have me come back weekly for a couple of weeks to work on it in the office.
Besides trying to nurse once a day, she's suggested I try the herbal supplement, Fenugreek, to try to help increase my supply. I'm very pleased and encouraged by Michelle's patience and understanding and positive attitude about being able to get him to nurse when he's this old, and also about being able to still increase my milk supply. In adition to the Fenugreek, she told me to relax, get lots of rest and sleep, drink lots of fluids and eat well, continue pumping/nursing and also stop cooking, cleaning, doing dishes and laundry! I'm not going to argue with that!
So anyone wanting to help us out, we've appreciated your financial gifts we've received towards Ethan's medical fund, but what we could really use at this time is some help with meals! Tonight we're having our very first meal brought to us - thanks to Dan's mom!
Also, 2 days ago I mentioned that Ethan was awake almost the entire day and I had hoped he'd sleep well that night and he did - 5.5 hours! But last night was a different story, he was asleep most of the day and then woke up every 2 hours. He's slept about half the day today, so we'll see how tonight goes! :-)
Today was another big day, first we went by my office for a visit with my co-workers and a meeting about the change in insurance that takes effect in October. Then we went to a different branch of Ethan's pediatrician's office to meet with a lactation consultant. To recap, with Ethan's heart problem he burns calories faster so all his feeds have had to be fortified with extra calories - by adding a couple teaspoons of formula to any bottle we give him. As a result, I haven't been allowed to breastfeed, so I've had to exclusively pump. Well as any mom reading this knows, pumping's not the most fun thing in the world, and it takes extra time to pump, then take the time to bottle feed. It's hard to get anything else done during the day! Therefore, I'm getting very frustrated and decided it was time to seek help! My main frustration has been that each pumping session only produces half the amount of milk that Ethan takes at each feeding so I feel like I'm not able to provide, therefore stressing myself out and that's not helping my supply at all!
As a first time mom, this feeding issue has been extremely difficult for me emotionally and physically. I want the special bonding time of nursing that most women get, and the cardiologist has said I can try breastfeeding once a day max, but that he needs the extra calories the rest of the time. Also, with bottle feeding, we know exactly how many ounces he's eating. Plus, because he failed the swallow study a month ago, all his feeds have to be thickened so he doesn't aspirate (let the food go down his windpipe instead of down his throat into his stomach). So at our visit today, Michelle tried to teach Ethan to latch on, but he's spoiled - a bottle is much faster to feed from than me! She has given me tips to try to get Ethan to latch on, which I will try daily, and she's also going to have me come back weekly for a couple of weeks to work on it in the office.
Besides trying to nurse once a day, she's suggested I try the herbal supplement, Fenugreek, to try to help increase my supply. I'm very pleased and encouraged by Michelle's patience and understanding and positive attitude about being able to get him to nurse when he's this old, and also about being able to still increase my milk supply. In adition to the Fenugreek, she told me to relax, get lots of rest and sleep, drink lots of fluids and eat well, continue pumping/nursing and also stop cooking, cleaning, doing dishes and laundry! I'm not going to argue with that!
So anyone wanting to help us out, we've appreciated your financial gifts we've received towards Ethan's medical fund, but what we could really use at this time is some help with meals! Tonight we're having our very first meal brought to us - thanks to Dan's mom!
Saturday, September 8, 2007
We're Home!
Thanks everyone for all your prayers and words of encouragement over the past 4 weeks that we've been at UNC (and even during labor and delivery). Dr. Stewart told us to plan on staying in the hospital 4-6 weeks after delivery and we're so thankful that it was only 4 weeks! God has been so gracious by answering prayer after prayer that has been lifted up during this time - including my prayers last night that he'd continue to do well off the oxygen and that we'd get to go home today or tomorrow.
Ethan has been doing very well ever since his heart cath yesterday morning. As we mentioned yesterday, he didn't need any oxygen during the procedure, but the nurses did put him on .1ml for most of the day while he was sleeping and trying to come off the anesthesia. By 6pm last night, they took Ethan off the oxygen to see how he would do and he made it all night long without needing any oxygen!
At 8:45 this morning, the attending doctor, Dr. Smitherman called us to let us know the good news that Ethan was ready to go home! So we packed up our belongings and cleaned out our room at the Ronald McDonald house and headed over to the hospital. We got to UNC by 10:45 am, gathered up his and our belongings, waited for his nurse to get out of a meeting, received our discharge papers and final instructions and were out of there by 12:15 pm!
For those of you who don't know, my (Julie) parents have been living at our house since July 4th, while their new house is being built. This has been a blessing so that our house hasn't had to sit empty for the past month and we didn't have to pay anyone to watch our dog. We surprised Mom and Dad this afternoon by not giving them a courtesy call, we just walked in the door with Ethan! Mom and Dad will close on their new house on Monday, Sept. 10th but will wait until next Friday, Sept. 14th until they move out so we'll be able to have a little extra help as we get used to having a baby at home with us.
Now the real fun begins as we get settled into our own routine here at home where we all belong! We will have monthly pediatric cardiology appointments with Dr. Robinson at WakeMed Hospital, which is much closer to home than UNC (15 min. instead of an hour drive). Ethan's first checkup will be next Thursday morning. We will also be scheduling Ethan's first pediatrician appointment for sometime that same week, preferably before the cardiology appointment. We will continue to monitor Ethan's oxygen sats during the night when he's asleep, and also a few times each day when he's awake and calm, just to make sure things are still looking good. We have a huge oxygen tank and several portable tanks, just in case we need it.
We will continue to give regular updates on Ethan, but it may not be daily now that we're at home. Just know that "no news is good news". Please continue to keep us in your thoughts and prayers. We've made if over the first hurdle (Norwood surgery) but we've still got 2 more surgeries to go (one in about 3-7 months from now, and another about 2-4 years from now).
Ethan has been doing very well ever since his heart cath yesterday morning. As we mentioned yesterday, he didn't need any oxygen during the procedure, but the nurses did put him on .1ml for most of the day while he was sleeping and trying to come off the anesthesia. By 6pm last night, they took Ethan off the oxygen to see how he would do and he made it all night long without needing any oxygen!
At 8:45 this morning, the attending doctor, Dr. Smitherman called us to let us know the good news that Ethan was ready to go home! So we packed up our belongings and cleaned out our room at the Ronald McDonald house and headed over to the hospital. We got to UNC by 10:45 am, gathered up his and our belongings, waited for his nurse to get out of a meeting, received our discharge papers and final instructions and were out of there by 12:15 pm!
For those of you who don't know, my (Julie) parents have been living at our house since July 4th, while their new house is being built. This has been a blessing so that our house hasn't had to sit empty for the past month and we didn't have to pay anyone to watch our dog. We surprised Mom and Dad this afternoon by not giving them a courtesy call, we just walked in the door with Ethan! Mom and Dad will close on their new house on Monday, Sept. 10th but will wait until next Friday, Sept. 14th until they move out so we'll be able to have a little extra help as we get used to having a baby at home with us.
Now the real fun begins as we get settled into our own routine here at home where we all belong! We will have monthly pediatric cardiology appointments with Dr. Robinson at WakeMed Hospital, which is much closer to home than UNC (15 min. instead of an hour drive). Ethan's first checkup will be next Thursday morning. We will also be scheduling Ethan's first pediatrician appointment for sometime that same week, preferably before the cardiology appointment. We will continue to monitor Ethan's oxygen sats during the night when he's asleep, and also a few times each day when he's awake and calm, just to make sure things are still looking good. We have a huge oxygen tank and several portable tanks, just in case we need it.
We will continue to give regular updates on Ethan, but it may not be daily now that we're at home. Just know that "no news is good news". Please continue to keep us in your thoughts and prayers. We've made if over the first hurdle (Norwood surgery) but we've still got 2 more surgeries to go (one in about 3-7 months from now, and another about 2-4 years from now).
Friday, September 7, 2007
Cath complete!
Well Ethan's heart cath went well! Dr. Robinson (Ethan's cardiologist that he'll continue to see on a regular basis in the future) came and talked to us while Ethan was in post-op and said that Ethan's heart looks great, the Sano shunt is working very well and is one of the best he's seen yet from a Norwood surgery! Ethan's pulmonary artery is also a great size (it can often be small) for his age. So the good news is that there's nothing wrong with his heart at this time that would warrant needing to go back in for more surgery at this time. We were encouraged and surprised to hear that the medical team had him completely off oxygen (by accident) during the cath procedure and his sats stayed in the upper 70's-low 80's!
Ethan's still sleeping right now, the anesthesia still hasn't worn off so they have put him on .25ml of oxygen while he sleeps, then Dr. Robinson wants to try to have him start being weaned off the oxygen again. Whenever we do go home, we will probably still have an oxygen tank at home with us in case we still need it. One new thing we learned from Dr. Robinson is that all babies tend to have higher pressure in their lungs the first 6-8 weeks after birth, which limits the amount of blood flow to the lungs, but that pressure should decrease by about that time. Since Ethan will only be 4 weeks old tomorrow, he's been ahead of the game with the rest of his recovery so we just need to give him some more time to let that pressure decrease as he gets older and with the HLHS, it just might take him a little longer.
Continue to pray for patience for us and the doctors as we wean him off the oxygen. Pray that his sats would be able to remain in the 70-85% range, and that we can get home soon with him, whether or not we have to keep him on oxygen. We already have a portable tank here in his CICC room, as well as a large tank waiting for us at home in case we need it. Also, praise God that Ethan's off his NG tube and eating well. He's averaging 5 minutes feeding time to finish his entire 60-70cc bottle (which is just over 2 oz.), instead of the 15-20 minutes it's taken him the first 3 weeks of life. God has been so good to us through this journey - in the doctors rounds this morning, our speech therapist overheard the docs saying that they're very encouraged that Ethan's eating like a champ!
Ethan's still sleeping right now, the anesthesia still hasn't worn off so they have put him on .25ml of oxygen while he sleeps, then Dr. Robinson wants to try to have him start being weaned off the oxygen again. Whenever we do go home, we will probably still have an oxygen tank at home with us in case we still need it. One new thing we learned from Dr. Robinson is that all babies tend to have higher pressure in their lungs the first 6-8 weeks after birth, which limits the amount of blood flow to the lungs, but that pressure should decrease by about that time. Since Ethan will only be 4 weeks old tomorrow, he's been ahead of the game with the rest of his recovery so we just need to give him some more time to let that pressure decrease as he gets older and with the HLHS, it just might take him a little longer.
Continue to pray for patience for us and the doctors as we wean him off the oxygen. Pray that his sats would be able to remain in the 70-85% range, and that we can get home soon with him, whether or not we have to keep him on oxygen. We already have a portable tank here in his CICC room, as well as a large tank waiting for us at home in case we need it. Also, praise God that Ethan's off his NG tube and eating well. He's averaging 5 minutes feeding time to finish his entire 60-70cc bottle (which is just over 2 oz.), instead of the 15-20 minutes it's taken him the first 3 weeks of life. God has been so good to us through this journey - in the doctors rounds this morning, our speech therapist overheard the docs saying that they're very encouraged that Ethan's eating like a champ!
Thursday, September 6, 2007
Thursday Night in the CICC
This morning during rounds, the Chair of Children's Cardiology spoke with me about Ethan's condition. He had a lot of good things to say. In fact, Ethan's whole team is quite pleased with many aspects of his recovery. He continues to eat like a champ. He has come a long way in that area. His heart rhythm and blood pressure continue to be in the near optimum range. Ethan has been spared many of the complications that often can lead to a very dangerous journey for HLHS babies.
One area DRs are concerned about is his oxygen saturation (we sometimes call this "sats" or "pulse ox"). Ideally, his sats should be 75-85%. Ethan's sats are in that range but only due to the assistance gained by being on oxygen. Each time we try to wean Ethan of the oxygen, his sats drop. Sometimes they go back up again. They go back up - they come down. And all the time to "safe" levels - but not levels we would want Ethan to be in all the time. When he sleeps deeply, his sats have been dipping below 70%. Again, because we are monitoring this closely, and increasing oxygen improves his sats quickly, Ethan is not in danger during these changes. That being said, Ethan should be off of oxygen by now. DRs don't know why his sats are fluctuating so much. To find out, Ethan has been having regular echocardiograms (bi-weekly at least). They've been inconclusive in regards to saturation but have reaffirmed that his heart is doing as it should be physiologically - which is great.
As an effort to learn more about his blood flow, internal pressures of heart chambers, and arteries and veins in the heart and lungs, a cardiopulmonary catheterization has been scheduled for Friday morning at 8am. There is little risk associated with the procedure. This procedure is done under local anesthesia and is performed in a special lab - not an OR. The procedure, in short, consists of threading a small tube with a pressure sensor on the end of it through his veins, heart, and arteries. Hopefully the DRs will be able to further understand the particulars of Ethan's heart, lungs, and the veins and arteries related to the two. Hopefully some light will be shed on why Ethan's sats bounce so regularly. His sats issue is the last thing that needs to be addressed and rectified before Ethan can go home.
Please pray for Ethan's safety, steady hands and clarity for all those involved in the catheterization, and that Ethan's sats would improve with no further non-medicinal intervention.
One area DRs are concerned about is his oxygen saturation (we sometimes call this "sats" or "pulse ox"). Ideally, his sats should be 75-85%. Ethan's sats are in that range but only due to the assistance gained by being on oxygen. Each time we try to wean Ethan of the oxygen, his sats drop. Sometimes they go back up again. They go back up - they come down. And all the time to "safe" levels - but not levels we would want Ethan to be in all the time. When he sleeps deeply, his sats have been dipping below 70%. Again, because we are monitoring this closely, and increasing oxygen improves his sats quickly, Ethan is not in danger during these changes. That being said, Ethan should be off of oxygen by now. DRs don't know why his sats are fluctuating so much. To find out, Ethan has been having regular echocardiograms (bi-weekly at least). They've been inconclusive in regards to saturation but have reaffirmed that his heart is doing as it should be physiologically - which is great.
As an effort to learn more about his blood flow, internal pressures of heart chambers, and arteries and veins in the heart and lungs, a cardiopulmonary catheterization has been scheduled for Friday morning at 8am. There is little risk associated with the procedure. This procedure is done under local anesthesia and is performed in a special lab - not an OR. The procedure, in short, consists of threading a small tube with a pressure sensor on the end of it through his veins, heart, and arteries. Hopefully the DRs will be able to further understand the particulars of Ethan's heart, lungs, and the veins and arteries related to the two. Hopefully some light will be shed on why Ethan's sats bounce so regularly. His sats issue is the last thing that needs to be addressed and rectified before Ethan can go home.
Please pray for Ethan's safety, steady hands and clarity for all those involved in the catheterization, and that Ethan's sats would improve with no further non-medicinal intervention.
Wednesday, September 5, 2007
Wednesday afternoon
Well we're still trying to figure out Ethan's oxygen saturations. He still sats in the 60s when he's asleep so he has to be on a higher oxygen concentration, but then when he's awake (and especially when he's eating) his sats are in the upper 70s to low 80s so the nurses have to turn the oxygen back down to almost nothing. A big oxygen tank and a portable oxygen tank have been ordered for us to use whenever we go home, if he's still needing it by then. If we do have to go home with oxygen, he'll have to be on it 24hrs/day. The doctors don't usually send HLHS babies who've had the Norwood (first surgery) home on oxygen but since this is really his biggest issue, they're considering doing it since he's on so little oxygen most of the time (.1-.4 ml/hr).
So as stated in yesterday's blog, oxygen sats are the biggest prayer request at this time. As much as we still long to be home as a family, we are waiting on God's timing to make sure that Ethan's body is strong enough and getting enough oxygen before we go home. Becoming a new parent is challenging enough without the added tasks of all the medical equipment we'll be taking home - pulse oximiter (to measure oxygne sats), NG feeding tube and pump (to supplement his feeds if he can't take his whole 2oz. (60-65cc) bottle, and now an oxygen tank.
So as stated in yesterday's blog, oxygen sats are the biggest prayer request at this time. As much as we still long to be home as a family, we are waiting on God's timing to make sure that Ethan's body is strong enough and getting enough oxygen before we go home. Becoming a new parent is challenging enough without the added tasks of all the medical equipment we'll be taking home - pulse oximiter (to measure oxygne sats), NG feeding tube and pump (to supplement his feeds if he can't take his whole 2oz. (60-65cc) bottle, and now an oxygen tank.
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