Well it seems that it is indeed a stomach bug that Ethan caught and now he's passed it on to me and Dan as well. :-( Good news is that Ethan seems to be feeling better today, and so do I so hopefully it was just a 24 hour thing for me. Dan's still asleep so I don't know how he's feeling, but he had a rough night last night. Please pray that this passes quickly from our family so we can get back to trying to get Ethan back on schedule after surgery. Our discharge papers and other friends with HLHS babies have all said it often takes a few weeks to get back on schedule with feeding, sleeping and playing after this 2nd surgery.
Tomorrow morning Ethan goes back to the pediatrician to get his chest tube sutures removed, so we're excited about that! One more step towards his healing from the surgery! And next week we go for a checkup with Ethan's cardiologist to have an echo to make sure his heart is still functioning well from the surgery.
Tomorrow is also the day for baby girl Annabelle Butcher (http://www.babygirlbutcher.blogspot.com/) to have her first heart surgery for HLHS, so please be keeping her and her family and medical team in your prayers. Thanks!
Thursday, January 31, 2008
Tuesday, January 29, 2008
Better night
We made it over 24 hours without Ethan throwing up! As mentioned in my last post, Ethan was on Pedialyte most of the day yesterday and he managed to keep it all down! So at his normal 7pm feeding time, I tried giving him 2oz. of formula and he seemed to do fine and want more, so I gave him 2 more. He did fine with that too so I fed him another 4 oz. bottle at 10pm and put him to bed. He managed to keep that down all night and I fed him again around 6:50am and he kept that down too! But at his 10am feeding, he took 3 oz. then threw it all up. :-(
Also, I think he had some bad dreams and/or may have been in a little pain last night because he woke up every single hour from 1:30am-8am. You could seriously set a clock to it! Every time I'd go check on him, he looked like he was asleep but he'd just be screaming. So I would give him his pacifier, rub his tummy and side, tell him everything was ok and that he's home now and he'd fall right back asleep and repeat the screaming an hour later. At 3:30am, I gave him some tylenol in case he was in any pain. But I don't think that was the problem because he seemed fine all day yesterday.
The nurses warned us in our discharge papers that it's not uncommon for peds cardiology patients to have frequent nightmares once we're home, but I don't remember him having them last time we came home - maybe it's just because he's older and a little more aware of things now. Hopefully tonight we'll all sleep better! Thanks for keeping us in your thoughts and prayers!
Also, I think he had some bad dreams and/or may have been in a little pain last night because he woke up every single hour from 1:30am-8am. You could seriously set a clock to it! Every time I'd go check on him, he looked like he was asleep but he'd just be screaming. So I would give him his pacifier, rub his tummy and side, tell him everything was ok and that he's home now and he'd fall right back asleep and repeat the screaming an hour later. At 3:30am, I gave him some tylenol in case he was in any pain. But I don't think that was the problem because he seemed fine all day yesterday.
The nurses warned us in our discharge papers that it's not uncommon for peds cardiology patients to have frequent nightmares once we're home, but I don't remember him having them last time we came home - maybe it's just because he's older and a little more aware of things now. Hopefully tonight we'll all sleep better! Thanks for keeping us in your thoughts and prayers!
Monday, January 28, 2008
Rough Night
Poor little guy, he slept great our first night home, but last night wasn't so good. He got back to his normal eating schedule yesterday and seemed to be doing well, but he woke up crying at 3:30am (he usually sleeps from 10pm-6:30am). I went in to check on him and then he threw up. He continued throwing up every 15-20 minutes for the next 2 hours. I finally decided to call UNC's CICC unit (the floor we were on right before we went home) and asked them what to do. They suggested trying Pedialyte but we don't have any plus I didn't know how to thicken it. So they suggested feeding him one ounce/hour so he wasn't running on a totally empty stomach and so he wouldn't get dehydrated.
Ethan took the first ounce fine and seemed hungry for more so I let him have another half ounce and gave him a good burp but about 10 minutes later he threw up again. He finally fell asleep around 6:30am and slept till I woke him at 8:30am to go for his pediatrician appointment (just a routine follow up that the hospital scheduled for us). He seemed hungry so I tried feeding him 2 ounces and he gobbled it all up, but as I was burping him, he threw it all up again - a total of 8 episodes since 3:30 this morning. By that time, we were both exhausted but it was time to leave for the doctor.
His doctor said he looks great, his oxygen sat was in the mid-80's and he weighed almost 15 1/2 pounds, which is what he weighed before surgery. The doctor gave us a sample of Pedialyte and told us not to worry about thickening it, to just start him out very slow - about 2 teaspoons every 15 minutes for 2 times, then gradually increase the dosage and spread out the amount of time between feedings until we're up to 2oz. every 2 hours, then I can try mixing it with formula. His doctor thinks he may have caught a little bug since we came home on Saturday.
So please pray that Ethan can keep his Pedialyte down and eventually get back to taking a bottle by the end of the day. If it's not a stomach bug, I told the doc I think it could just be that he's adjusting to getting back to eating his normal eating schedule since he wasn't eating very much at the hospital. He fell asleep on the car ride home from the doctor so I'm just letting him sleep for a bit before I start the Pedialyte.
Ethan took the first ounce fine and seemed hungry for more so I let him have another half ounce and gave him a good burp but about 10 minutes later he threw up again. He finally fell asleep around 6:30am and slept till I woke him at 8:30am to go for his pediatrician appointment (just a routine follow up that the hospital scheduled for us). He seemed hungry so I tried feeding him 2 ounces and he gobbled it all up, but as I was burping him, he threw it all up again - a total of 8 episodes since 3:30 this morning. By that time, we were both exhausted but it was time to leave for the doctor.
His doctor said he looks great, his oxygen sat was in the mid-80's and he weighed almost 15 1/2 pounds, which is what he weighed before surgery. The doctor gave us a sample of Pedialyte and told us not to worry about thickening it, to just start him out very slow - about 2 teaspoons every 15 minutes for 2 times, then gradually increase the dosage and spread out the amount of time between feedings until we're up to 2oz. every 2 hours, then I can try mixing it with formula. His doctor thinks he may have caught a little bug since we came home on Saturday.
So please pray that Ethan can keep his Pedialyte down and eventually get back to taking a bottle by the end of the day. If it's not a stomach bug, I told the doc I think it could just be that he's adjusting to getting back to eating his normal eating schedule since he wasn't eating very much at the hospital. He fell asleep on the car ride home from the doctor so I'm just letting him sleep for a bit before I start the Pedialyte.
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!
More progress
Since we're so blessed that Ethan's doing so well, Dan has decided to go in to work today. I got to the hospital this morning and Ethan's oxygen had been moved down from .3 liters to .2, then about 30 minutes later, his nurse moved it down to .1 and they'll monitor that for a few hours. If that goes well, then she'll try taking him off oxygen and see how that goes - that's the main thing keeping us here, so be praying that goes well. It's great that he's been able to be so mobile so soon afer surgery! I may even get to take him upstairs to the playroom after lunch. There's an infant play time from 2-2:45 pm that his nurse just told me about today, so that will be fun!
Ethan just got his chest tube bandages and incision bandages removed while I was typing this post and the nurses are very pleased with how well he's healing. Then 2 cardiology residents came by and shut his oxygen off completely so they will monitor that for a couple of hours. Hopefully Ethan will take his nap and his oxygen sats will continue to look good during that time so we can get out of here soon - the residents said we may be out sometime this weekend if things continue to go this smoothly. They credit his success to how big he is, but we know all the real credit goes to our Heavenly Father for helping get him so strong and healthy leading up to this surgery.
Praises:
-Thank you Lord for the great medical staff here at UNC Hospital
-Thank you Lord for the speedy recovery this time around
-Thank you Lord for no signs of infection nor sickness while we've been here
-Thank you Lord for all the prayer requests already answered including our biggest concern about Ethan's interest in eating after being intubated/extubated
Prayer Requests:
-Pray Ethan continues to do well being off oxygen
-Patience for us if he does need to go back on a little oxygen since that's the only thing keeping us here
-Continued healing at such a speedy pace
-Pray for continued interest in eating (it's hard staying on a schedule here at the hospital with nurses coming in to check on him and update us)
Ethan just got his chest tube bandages and incision bandages removed while I was typing this post and the nurses are very pleased with how well he's healing. Then 2 cardiology residents came by and shut his oxygen off completely so they will monitor that for a couple of hours. Hopefully Ethan will take his nap and his oxygen sats will continue to look good during that time so we can get out of here soon - the residents said we may be out sometime this weekend if things continue to go this smoothly. They credit his success to how big he is, but we know all the real credit goes to our Heavenly Father for helping get him so strong and healthy leading up to this surgery.
Praises:
-Thank you Lord for the great medical staff here at UNC Hospital
-Thank you Lord for the speedy recovery this time around
-Thank you Lord for no signs of infection nor sickness while we've been here
-Thank you Lord for all the prayer requests already answered including our biggest concern about Ethan's interest in eating after being intubated/extubated
Prayer Requests:
-Pray Ethan continues to do well being off oxygen
-Patience for us if he does need to go back on a little oxygen since that's the only thing keeping us here
-Continued healing at such a speedy pace
-Pray for continued interest in eating (it's hard staying on a schedule here at the hospital with nurses coming in to check on him and update us)
Thursday, January 24, 2008
Day 2 in the CICC
Dan and I have enjoyed getting caught up on some much needed sleep, not having to get up and feed Ethan during the night! We got over here to the hospital around 10am. One of the cardiologists and his outpatient nurse were in his room, they are still saying he's doing great! He had a chest x-ray this morning and they said it looked a little better than yesterday, and it was already looking good yesterday! Praise God for what a smooth journey this has been so far, if things continue to go this well, we may be out by Monday.
The main things we're working on now to be looking at going home is getting off oxygen and getting his pain meds switched over from IV to oral. He's started taking his Lasix (diuretic medicine) orally, which we will go home on - just like last time. He's already down from 3 liters to .3 liters of oxygen, which is encouraging. He just had the central IV line removed from his neck, so he just has an IV line in his right foot. That's not on continuous drip - it mainly stays closed off and they only use it when it's time for his pain med. He also had a couple poopy diapers so now he's back to being "unclogged" and he's starting to eat more now!
Also, we just got invited to be part of a parent panel at a cardiology conference about HLHS that UNC is sponsoring in May! They only want 4 families and we're one of the chosen ones! Our friends Crystal & Ben and their baby girl Shelby are one of the other famillies! We're excited about this opportunity to share our story with nurses from all over the state.
The main things we're working on now to be looking at going home is getting off oxygen and getting his pain meds switched over from IV to oral. He's started taking his Lasix (diuretic medicine) orally, which we will go home on - just like last time. He's already down from 3 liters to .3 liters of oxygen, which is encouraging. He just had the central IV line removed from his neck, so he just has an IV line in his right foot. That's not on continuous drip - it mainly stays closed off and they only use it when it's time for his pain med. He also had a couple poopy diapers so now he's back to being "unclogged" and he's starting to eat more now!
Also, we just got invited to be part of a parent panel at a cardiology conference about HLHS that UNC is sponsoring in May! They only want 4 families and we're one of the chosen ones! Our friends Crystal & Ben and their baby girl Shelby are one of the other famillies! We're excited about this opportunity to share our story with nurses from all over the state.
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