Ethan had a good night, got lots of sleep, despite having to be back on oxygen all night (started at .5L and went down to .3L around 4am). He woke up full of energy and ready to play at 6am, which is early for him. I, on the other hand, tossed and turned all night and never really got any real sleep. We played and watched Disney channel and ate breakfast together then he went down for a nap at 8:30 (usually the time he'd just be getting up) and I'm just going to let him sleep as long as he can since his schedule's so off right now.
Morning rounds happened aroung 9am and by 10 his doc came to talk to me and said he's comfortable sending us home today as long as I feel comfortable taking him home. They don't want us to feel like they're rushing us out, which is nice, but we've been waiting since Tuesday to go home so we're more than ready to go!
Discharge papers have been ordered and there's no definite time they'll be done but we've been told best estimate of late afternoon. Dan's working half a day then coming to hang out with us until it's time to go.
Thank you for all your prayers and support. We praise God that we erred on the side of caution and brought him in when we did, otherwise things could've been a lot worse and we could've had a much longer stay than this.
We're still on schedule for our next regular cardiology checkup on Feb. 15th and we'll hopefully get word then on the time frame they're thinking for his third (and hopefully final) heart surgery. We've known all along that there's no way around it that the 3rd surgery has to happen and that each one gets harder on us since he's older and more aware of his surroundings. This was a good "trial run" of what's still to come. What a difference 2 years makes from when we were here last! He was a few weeks shy of 6 months old at that time, not talking or really very mobile and we had a lot more flexibility in terms of leaving his room. Now he wants us around the clock and sneaking away for meals has been tricky. Since he hasn't had much of an appetite and is being picky about what meals are brought to him (who serves a 2 yr. old Total Raisin Bran for b'fast and things like bbq chicken thigh for dinner?), I've been able to work it out to eat with him most of the time. Maybe if we get out by dinner time tonight, we can head to our fav locale here - Mama Dips - for dinner since I certainly will have no energy to cook tonight!
Once we get home and get settled, I plan to post some more "catch up" posts from the past 5 months and I know we're long overdue for new pictures as well!
Thursday, January 21, 2010
Wednesday, January 20, 2010
bed time
Quick recap of the day before we head to bed. Ethan has done a great job being weaned off oxygen today. He's been off of it since about 4:30pm and the real test/reason we're still here at UNC is that they want to monitor his O2 sats over night w/o oxygen to make sure he can handle it. If so, then they're planning to discharge us some time tomorrow. Time to try to get some sleep. He's still coughing on and off but it's definitely a big improvement from yesterday!
lab results
Finally, after waiting here for over 24 hours, we got lab results around 11:30pm last night. Good news is that all our waiting wasn't in vain - we knew he had SOMETHING and now we know exactly what - RSV. I'm encouraged that it isn't the seasonal flu or H1N1 but a little bummed that since it's a virus, no meds will work - it just has to run it's course. One doc just came by to greet us and let us know "the team" will be coming by to discuss today's action plan and when they'll be considering discharge. I don't expect to go home today b/c Ethan needs to be off oxygen and he's not on very much - originally put on 2L around 4am and at 9 he was weaned down to 1.5L then down to 1L at 9:45. We have to be totally weaned and Ethan keeping his normal range of sats before we can go home and that's really all that's holding us here, which is what always holds us here. So again, we're in a waiting pattern but at least we have more communication and understanding about what we're waiting for this time. Time for some cuddling with my little man. I'll try to update here later but will definitely update Facebook since I can do that from my new Palm Pre phone!
Tuesday, January 19, 2010
too long and prayer needed
Wow! I can't believe it's been nearly 6 months since my last update - sorry everyone! Ethan has been a normal, busy toddler since his 2nd birthday back in August. I'll give a quick update and then I've got a prayer request to share.
First, Ethan has managed to keep us so entertained as we watch him grow and explore the world around him! Some of his favorites are: Elmo (some things never change! - his absolute favorite movie used to be "Elmo in Grouchland" but now he's hooked on "Sesame Street: Let's Make Music featuring the music group Stomp"), Target (he tells me multiple times a day that he's going bye-bye and when I ask him where, he tells me he's going to Target and (depending on the day he's either buying bananas or apples or cookies!), fruit snacks (especially Food Lion's VeggieTales fruit snacks), apple juice, chocolate (def. my kid!), and he's just now branching out into playing with cars and trains (which he got for Christmas). He's also talking up a storm, turning into quite the social butterfly! He'd be a great greeter for Target or Wal-Mart!
Now, for the prayer request. We are back at UNC with Ethan. We managed to keep him healthy all fall and most of this winter until now. He started on Sunday morning after church having an occassional clear runny nose. Whenever he's had a runny nose in the past, he also gets a cough due to his sensitive gag reflex. Well the coughing got worse and worse Sunday afternoon and Monday morning so we called his pediatrician and got an appt. for Mon. afternoon.
At the appointment, we saw a brand new doc and since she knew from his chart that he's got a heart defect, she decided to check his oxygen saturation. He was about 10 points low (for him) - sats were in the mid 60's to low 70's (instead of upper 70's-low 80's). Next they called our cardiologist (Dr. R) at UNC to see what he recommends we do. Dr. R said to try to put oxygen on him but that just made him more made and dropped his sats a little more. So after fighting Ethan on trying to get oxygen, they called 911 and made us go to an ER. They wanted to send us to the closest one (WakeMed) but I've have personal issues with them in the past and have 0% confidence in having Ethan treated there so they let us go to our choice (UNC) instead. Ethan and I rode at the speed limit in the ambulance to UNC and arrived around 4:30pm. Dan went home to pack an overnight bag. We had a chest x-ray that came back fine then waited until almost 9pm for a decision and then they decided to admit us. I stayed here at the hospital with Ethan last night while Dan slept at home and came back to stay the day with us here.
Late last night after being admitted, Ethan spiked a fever but Tylenol was dispensed and the fever broke. They did run a respiratory culture to test for all types of respiratory illnesses (flue, RSV, etc.) but that won't come back until tonight at the earliest. No fever today, just lots of coughing and nothing they can do to help him (b/c of the stupid recall a few years ago for all kids cold meds). So now it's just a waiting game to see what his cultures conclude and see if he starts feeling worse or better.
Pray we get some answers soon and that we can be patient and wait for those results to come in. Despite sleep deprivation from hospital life and all the coughing, Ethan's shown some increased energy this afternoon and had fun reading books and coloring and cuddling with us a lot. The coughing has been so intense that his gag reflex has been causing him to puke on and off if trying to eat/drink during a coughing spell. He was on a maintenance IV last night to prevent dehydration but that was stopped at 11am and he's been enjoying lots of jello and juice today. He's done fine with those so he's been cleared to start trying solids - he's had 3 graham cracker squares and done fine with that. Ethan's just begging to go home and we are ready to go to - especially since the course of treatment right now is no different than what we'd be doing if we were at home - liquids/semi-solids and lots of cuddling.
First, Ethan has managed to keep us so entertained as we watch him grow and explore the world around him! Some of his favorites are: Elmo (some things never change! - his absolute favorite movie used to be "Elmo in Grouchland" but now he's hooked on "Sesame Street: Let's Make Music featuring the music group Stomp"), Target (he tells me multiple times a day that he's going bye-bye and when I ask him where, he tells me he's going to Target and (depending on the day he's either buying bananas or apples or cookies!), fruit snacks (especially Food Lion's VeggieTales fruit snacks), apple juice, chocolate (def. my kid!), and he's just now branching out into playing with cars and trains (which he got for Christmas). He's also talking up a storm, turning into quite the social butterfly! He'd be a great greeter for Target or Wal-Mart!
Now, for the prayer request. We are back at UNC with Ethan. We managed to keep him healthy all fall and most of this winter until now. He started on Sunday morning after church having an occassional clear runny nose. Whenever he's had a runny nose in the past, he also gets a cough due to his sensitive gag reflex. Well the coughing got worse and worse Sunday afternoon and Monday morning so we called his pediatrician and got an appt. for Mon. afternoon.
At the appointment, we saw a brand new doc and since she knew from his chart that he's got a heart defect, she decided to check his oxygen saturation. He was about 10 points low (for him) - sats were in the mid 60's to low 70's (instead of upper 70's-low 80's). Next they called our cardiologist (Dr. R) at UNC to see what he recommends we do. Dr. R said to try to put oxygen on him but that just made him more made and dropped his sats a little more. So after fighting Ethan on trying to get oxygen, they called 911 and made us go to an ER. They wanted to send us to the closest one (WakeMed) but I've have personal issues with them in the past and have 0% confidence in having Ethan treated there so they let us go to our choice (UNC) instead. Ethan and I rode at the speed limit in the ambulance to UNC and arrived around 4:30pm. Dan went home to pack an overnight bag. We had a chest x-ray that came back fine then waited until almost 9pm for a decision and then they decided to admit us. I stayed here at the hospital with Ethan last night while Dan slept at home and came back to stay the day with us here.
Late last night after being admitted, Ethan spiked a fever but Tylenol was dispensed and the fever broke. They did run a respiratory culture to test for all types of respiratory illnesses (flue, RSV, etc.) but that won't come back until tonight at the earliest. No fever today, just lots of coughing and nothing they can do to help him (b/c of the stupid recall a few years ago for all kids cold meds). So now it's just a waiting game to see what his cultures conclude and see if he starts feeling worse or better.
Pray we get some answers soon and that we can be patient and wait for those results to come in. Despite sleep deprivation from hospital life and all the coughing, Ethan's shown some increased energy this afternoon and had fun reading books and coloring and cuddling with us a lot. The coughing has been so intense that his gag reflex has been causing him to puke on and off if trying to eat/drink during a coughing spell. He was on a maintenance IV last night to prevent dehydration but that was stopped at 11am and he's been enjoying lots of jello and juice today. He's done fine with those so he's been cleared to start trying solids - he's had 3 graham cracker squares and done fine with that. Ethan's just begging to go home and we are ready to go to - especially since the course of treatment right now is no different than what we'd be doing if we were at home - liquids/semi-solids and lots of cuddling.
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