Friday, August 31, 2007
Planning to visit Ethan at UNC on Tuesday?.....
...CANCEL YOUR TRIP! Ethan is going home to be in his natural habitat! Gray-C is ready. Mom and Dad are DEFINATELY ready! DRs say Ethan should be ready to go home on Sunday or Monday. He might go home with an NG feeding tube that goes down his little nose into his throat, all the way to his stomach. We've got a little machine to measure the oxygenation of his blood once a day. All in all, we are so used to being around this type of medical equipment, it shouldn't be a very big deal. He'll be on 3 medicines - all taken by mouth. He is currently off his oxygen... we tried to take him off it before and he wasn't quite ready. He's been off it for 6.5 hours and his stats are still good so he might stay off it this time. Thanks for your prayers, thoughts, emails, and letters. They have made these 23 days much easier to deal with and have given us supernatural peace.
Thursday, August 30, 2007
Still in CICC!
Well we've made it 26 hours and we're still here in CICC! I (Julie) talked with Ethan's doc this morning and she said he did well overnight and that we are probably looking at going home in less than a week, as long as we have no other setbacks! Since home is where we desperately long to be once Ethan's doing really well, please be in prayer that everything continues to go smoothly so we can be on our way soon.
In order to be headed home, we finally have been given the goals to work towards to clue us in as to how close we are to leaving here. First, Ethan needs to be completely weaned off of his oxygen (which he's close to right now). Second, he needs to start gaining weight and continue to have a good pulse ox (oxygen saturation level) once he gets off the oxygen. Third, he needs to still work on his feeds and we have to learn how to put in and take out his NG tube (this has to be changed weekly or whenever he may happen to pull it out). Fourth, we have to learn how to fill the NG tube with his supplemental feeds. Fifth, we need to learn about his oral medications - the correct dosage and how often to give it to him. Once we get all these things nailed down, then we should be able to leave!
In the meantime, we're just having a fun time hanging out with him and finally getting to hold him and play with him. We are including some short video footage as promised in yesterday's blog. Enjoy!
In order to be headed home, we finally have been given the goals to work towards to clue us in as to how close we are to leaving here. First, Ethan needs to be completely weaned off of his oxygen (which he's close to right now). Second, he needs to start gaining weight and continue to have a good pulse ox (oxygen saturation level) once he gets off the oxygen. Third, he needs to still work on his feeds and we have to learn how to put in and take out his NG tube (this has to be changed weekly or whenever he may happen to pull it out). Fourth, we have to learn how to fill the NG tube with his supplemental feeds. Fifth, we need to learn about his oral medications - the correct dosage and how often to give it to him. Once we get all these things nailed down, then we should be able to leave!
In the meantime, we're just having a fun time hanging out with him and finally getting to hold him and play with him. We are including some short video footage as promised in yesterday's blog. Enjoy!
Wednesday, August 29, 2007
CICC AT LAST!
Well it's been 2 days since Ethan's been "ready" to go up to the CICC floor and he finally went up today. He was waiting on a room up there in order to move and one opened up today! He didn't seem to like his thickened formula too much. Maybe they'll make it a little less thick tomorrow. He's still doing pretty well. I got some video of him today. I'll put it on the website tomorrow. They are large files so might take a while to download.
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!
Sunday, August 26, 2007
Weekend comes to an end
Julie and I spent some time at our house in Knightdale on Saturday. It was nice to be home again. Hopefully next time we go home again, Ethan will be with us.
Ethan's heart continues to do well. He is down to only one heart medicine (Digoxin) which he takes orally two times a day. As long as his heart remains in good shape, the next milestone he needs to work on is eating as much as he needs from the bottle consistently. We've already seen an improvement in his eating over the weekend.
He is actually doing well enough to move him out of the PICU (Pediatric Intensive Care Unit) into the CICC (Cardiac Intermediate Care Center). That is a good thing, although we feel he is very safe in the PICU because his nurse is only assigned to him and one other baby.
His EKG showed normal rhythms today. So they'll likely move him out and up the CICC floor tommorow.
Ethan's heart continues to do well. He is down to only one heart medicine (Digoxin) which he takes orally two times a day. As long as his heart remains in good shape, the next milestone he needs to work on is eating as much as he needs from the bottle consistently. We've already seen an improvement in his eating over the weekend.
He is actually doing well enough to move him out of the PICU (Pediatric Intensive Care Unit) into the CICC (Cardiac Intermediate Care Center). That is a good thing, although we feel he is very safe in the PICU because his nurse is only assigned to him and one other baby.
His EKG showed normal rhythms today. So they'll likely move him out and up the CICC floor tommorow.
Friday, August 24, 2007
Friday morning
Today's another nice day here in Chapel Hill. We are in a corner room and have 2 windows here in Ethan's PICU room so we can either look out the front window and watch traffic on Manning Drive as people pull up to the hospital/parking deck, or from the side window we can watch (and hear) all the drilling and construction going on for the new Cancer Building. Ethan is definitely learning to be a sound sleeper - between the construction noise, monitors beeping in his room, and people talking, he manages to stay sound asleep most of the time!
Last night the nurses tried to re-suture in his central line in his neck, but it fell out so this morning they're going to just do an IV in his foot instead of trying to use the central line again. The central line is sutured in, only because it was the main access point for all his IV drugs since birth, and it tends to get a little heavy so the sutures were helping to keep it in place without pulling on it too much.
His nurse today said he did a great job over night, all his stats were good and all his feedings were done by bottle instead of NG tube! Either nurse Donna (his night nurse this week) has the special touch, or else Ethan is just a night owl! The speech therapist is scheduled to come at noon today to work on bottle feeding some more, which we pray will go well today. We'll give you an update later today on how that went.
Last night the nurses tried to re-suture in his central line in his neck, but it fell out so this morning they're going to just do an IV in his foot instead of trying to use the central line again. The central line is sutured in, only because it was the main access point for all his IV drugs since birth, and it tends to get a little heavy so the sutures were helping to keep it in place without pulling on it too much.
His nurse today said he did a great job over night, all his stats were good and all his feedings were done by bottle instead of NG tube! Either nurse Donna (his night nurse this week) has the special touch, or else Ethan is just a night owl! The speech therapist is scheduled to come at noon today to work on bottle feeding some more, which we pray will go well today. We'll give you an update later today on how that went.
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