Day 4
Day 3
Saturday, April 26, 2008
out of ICU
We have room out on the floor now (331). Athan was a bit fussy this afternoon, but after a couple of big burps and a dose of Tylenol, he was better. His lungs sound more and more clear to anyone who has listened to him. Ryan has been in Wilmore asleep (finally!), and he'll be back to see us soon.
Dr. Plunkett came to see us just before we left the ICU and described to us in more detail the repair that he did and exactly where the leaks are in the valve. He said again that it may correct itself, it may not. He said to just file away the possibility of another surgery in the future, but not to worry about it at all right now. The leakage is very minimal, and the medication will help.
He also said we may be home by Monday or Tuesday. :-)
Dr. Plunkett came to see us just before we left the ICU and described to us in more detail the repair that he did and exactly where the leaks are in the valve. He said again that it may correct itself, it may not. He said to just file away the possibility of another surgery in the future, but not to worry about it at all right now. The leakage is very minimal, and the medication will help.
He also said we may be home by Monday or Tuesday. :-)
Friday, April 25, 2008
first bit of bad news.
One of Athan’s surgeons came by to talk to me earlier today. They looked more closely at the ECHO from this morning, and it shows a little bit of leakage of the mitral valve. It may yet correct itself, and it is not alot of leakage. Still, we were hoping for none at all. He will have to stay on a new medication for now for the mitral regurgitation.
I think Ryan and I are going to get some dinner, and after I feed Athan next, I will go out to Wilmore again (Ryan is being quite bullheaded about this point) to get one more night of rest before I can feed him whenever he wants.
I think Ryan and I are going to get some dinner, and after I feed Athan next, I will go out to Wilmore again (Ryan is being quite bullheaded about this point) to get one more night of rest before I can feed him whenever he wants.
another night in ICU
Athan had a better night last night. He and dad didn’t get hours and hours of sleep, exactly, but certainly better than the night spent angry and restrained.
The ECHO this a.m. showed that the repair sites in his heart look good. The x-rays still show some junk in his lungs that needs to be cleared, so we are working with him to help get that fluid out. They are also watching his fluid intake closely, so we’ll alternate breast feeding with a bottle every other meal (every 3 hours ‘round the clock). He is still on oxygen for the moment. They tried to take it off last night, but it was just a little too soon. He is off the IV fluids, so we only have to be hooked up to IV stuff when he gets medicine. Otherwise the only cords and tubes that remain are his oxygen and monitors. We are going to stay here in ICU tonight to keep watching the fluid issue.
Morgan and the grandmas headed out this morning to go back to New Mexico. We are so thankful that Morgan will get to have this fun vacation while we focus on taking care of Athan.
Ryan has done two night shifts in a row up here, and he’s sleepy. I’ve gotten more sleep for a couple days, so I’m hoping he’ll let me take tonight and he’ll go home and get some sleep.
Once again, we have been taken care of so very well by all the staff here at UK. HUGE thank-yous to all our docs, nurses, and support staff for being so good to our boy. Selena was the nurse with the magic touch that started his first IV, and then fought with Ryan through that first hellish night post-op. Kim helped us sooth him when he was so mad he was trying to kick the moon. Kathleen has patiently helped us through our two days here, taking good care of Athan and Mom and Dad. We are so thankful to all of you who have given your knowledge and skill to our Athan.
The ECHO this a.m. showed that the repair sites in his heart look good. The x-rays still show some junk in his lungs that needs to be cleared, so we are working with him to help get that fluid out. They are also watching his fluid intake closely, so we’ll alternate breast feeding with a bottle every other meal (every 3 hours ‘round the clock). He is still on oxygen for the moment. They tried to take it off last night, but it was just a little too soon. He is off the IV fluids, so we only have to be hooked up to IV stuff when he gets medicine. Otherwise the only cords and tubes that remain are his oxygen and monitors. We are going to stay here in ICU tonight to keep watching the fluid issue.
Morgan and the grandmas headed out this morning to go back to New Mexico. We are so thankful that Morgan will get to have this fun vacation while we focus on taking care of Athan.
Ryan has done two night shifts in a row up here, and he’s sleepy. I’ve gotten more sleep for a couple days, so I’m hoping he’ll let me take tonight and he’ll go home and get some sleep.
Once again, we have been taken care of so very well by all the staff here at UK. HUGE thank-yous to all our docs, nurses, and support staff for being so good to our boy. Selena was the nurse with the magic touch that started his first IV, and then fought with Ryan through that first hellish night post-op. Kim helped us sooth him when he was so mad he was trying to kick the moon. Kathleen has patiently helped us through our two days here, taking good care of Athan and Mom and Dad. We are so thankful to all of you who have given your knowledge and skill to our Athan.
Thursday, April 24, 2008
afternoon update
Athan has continued to rest better today. There has been some concern about him keeping his oxygen saturation up high enough, so they took a chest X-ray to check for fluid build-up. There is some fluid on his left side, so we are doing what we can to help him clear that out. Mostly, that means patting him on the back to knock it loose, and praying that he will cough often and effectively. The respiration therapist told Grammy to “beat the snot out of him,” which Grammy was a bit hesitant to do! :) She is patting away, though, and Athan is happily snoozing with her right now.
he was just hungry
The tube and wires came out with no problem at all, and when I arrived this morning, Ryan was holding him. So good! :) I held him for a bit, and tried to get him to latch on and eat. He is still a bit too lethargic to breastfeed, but he is allowed as much milk as he will take in a bottle.
Athan is really snoozing right now. He took a bottle about an hour ago, and has been as relaxed as we have seen him since then. Poor guy was just so hungry! Now that his tummy is full - he took a full 5 oz - he is resting.
They are starting Tylenol around the clock so he can come off of the morphine. When the morphine stops, we will be able to disconnect one of his IVs. We get excited about the prospect of one less tube/cord.
When he is semi-alert, the nasal canula for his oxygen tube seems to bug him the most. We have to wrestle with him a bit to keep him from pulling it out all the time.
Just so you know - we cannot access the internet from our room in PICU, and we have to step out to the waiting room to post a blog. When we are able, we will do so, but our post may be a bit slower as he wakes up and wants to be held more.
Ryan will be heading out to Wilmore in a while to nap and see Morgan for a while. Morgan, Nana, and Grammy will fly back to New Mexico early in the morning.
Athan is really snoozing right now. He took a bottle about an hour ago, and has been as relaxed as we have seen him since then. Poor guy was just so hungry! Now that his tummy is full - he took a full 5 oz - he is resting.
They are starting Tylenol around the clock so he can come off of the morphine. When the morphine stops, we will be able to disconnect one of his IVs. We get excited about the prospect of one less tube/cord.
When he is semi-alert, the nasal canula for his oxygen tube seems to bug him the most. We have to wrestle with him a bit to keep him from pulling it out all the time.
Just so you know - we cannot access the internet from our room in PICU, and we have to step out to the waiting room to post a blog. When we are able, we will do so, but our post may be a bit slower as he wakes up and wants to be held more.
Ryan will be heading out to Wilmore in a while to nap and see Morgan for a while. Morgan, Nana, and Grammy will fly back to New Mexico early in the morning.
Thursday morning rounds
The big guy had a few rocky patches of discomfort during the night, but in the end we figured out some ways to allow decent stretches of rest. Dr. Plunkett and the PICU doctors just made their rounds this morning and decided the following: Athan looks good, and they want to remove the chest tube and the pacer wires. His hematacrit was on the border line this morning (which is common after surgery) so they decided to give him a little blood today - for an extra boost. (By the way, it turns out he did not require an all out blood transfusion during the surgery) If all goes well with the removal of wires, etc then he should be on schedule to begin eating in a while after the sedation wears off. This could be as early as mid-morning or as late as this afternoon.
Wednesday, April 23, 2008
good vitals, some discomfort on night #1
On.
Off.
Off.
Athan has been touch and go as far as sleep for the last 4 hours or so. We’re doing everything we can think of to help him rest. Even with the highest dosages of sedation the Dr. is comfortable with, the little guy still occasionally tries to unfetter himself. Who can blame him, right? The good news is that his vital signs and labs are in great shape!
Hopefully he'll sleep well tonight and be on track to start eating sometime in the morning. Amberly went back to Wilmore with the grandmas to spend some time with Morgan (who it sounds like had a great time with the Smiths and Jaggers today! Thank you.) and get some rest. All of you, with your prayers and hospitality, make it possible for us to "be a family" even when we're spread out in central Kentucky for a few days. "Thank you" hardly seems sufficient.
Hopefully he'll sleep well tonight and be on track to start eating sometime in the morning. Amberly went back to Wilmore with the grandmas to spend some time with Morgan (who it sounds like had a great time with the Smiths and Jaggers today! Thank you.) and get some rest. All of you, with your prayers and hospitality, make it possible for us to "be a family" even when we're spread out in central Kentucky for a few days. "Thank you" hardly seems sufficient.
pray for rest
First, for Athan. It is a little unusual that he has been awake and alert as much as he has been. They are searching out the right dosage of sedative and pain meds that would help him rest better.
Also, for Ryan. He is doing the night shift by himself tonight, and he's tired.
And for me. I'm home with Morgan tonight in hopes of getting much-needed rest to be able to stay up with Athan the next few days when he can breastfeed again.
Thanks. We'll keep posting when we can. Goodnight.
Also, for Ryan. He is doing the night shift by himself tonight, and he's tired.
And for me. I'm home with Morgan tonight in hopes of getting much-needed rest to be able to stay up with Athan the next few days when he can breastfeed again.
Thanks. We'll keep posting when we can. Goodnight.
we got to see him
Athan has already had his breathing tube taken out! :) He currently has a chest tube, 2 temporary pacer wires, 3 IVs, a feeding tube, and all the wires for the monitors. He was also kicking like a crazy man and making some of those sites bleed a little, so his legs and arms are gently restrained for now. He is getting all of his meds, plus some morphine for the pain.
Nana nd Grammy are with him now.
He looks good, yall. He's pale and drugged, but better than I anticipated at this stage. I'm doing better than I thought I would be at this stage. Thank you all for praying.
The next couple of days will be difficult ones. I'm nervous about the gap of time between when he is alert and when we can hold him (and a bit later, when he can breastfeed again).
Nana nd Grammy are with him now.
He looks good, yall. He's pale and drugged, but better than I anticipated at this stage. I'm doing better than I thought I would be at this stage. Thank you all for praying.
The next couple of days will be difficult ones. I'm nervous about the gap of time between when he is alert and when we can hold him (and a bit later, when he can breastfeed again).
surgery's over.
The repair went well. Korinne came to tell us that he is off the machine and his heart is beating on its own. Dr. Plunkett will walk upstairs with Athan in a few minutes and get him settled in the ICU, then come and report to us the details of the repair. Korinne seemed pleased with the surgery and how the little guy held up. Depending on how Athan comes off of the anesthesia, they may extubate him this afternoon! He'll have a drainage tube coming out below his sternum and two pacer wires in case there are irregularities with the heartbeat in the near future. We should get to go in and see him this afternoon, and hopefully get to hold him tomorrow.
The repair went well!
Korinne (Dr. Plunkett's nurse) just updated us with news that the actual heart repair went well. They are now in the process of "rewarming" in order to take Athan off the bypass machine. Her prediction was that in the next hour or two he would be transferred out of the operating room into ICU.
under way
Korinne just came up to tell us they made the incision about 10 minutes ago. The next step is to put him on the heart-lung machine, and "the actual repair will start in about 30 minutes."
in the OR
Athan went back to the operating room at 7:45. He was asleep and snoring when we left him. We should have another update in an hour or so.
after x-ray
After the x-ray we went back upstairs to start and IV. We had a little bit of trouble, and several of his IV sites didn't work at first. The floor nurse called one of the PICU nurses, who was able to start his IV in his foot.
Even with an IV in, he was up to playing with Dad a little before he went to sleep.
While the boys played, I had my first Coke in 6 months (Athan was fasting by then, so no danger of him getting the caffine).
Then (around 2:30) we were all able to get some rest before morning meds and moving down to the pre-op holding room.
Even with an IV in, he was up to playing with Dad a little before he went to sleep.
While the boys played, I had my first Coke in 6 months (Athan was fasting by then, so no danger of him getting the caffine).
Then (around 2:30) we were all able to get some rest before morning meds and moving down to the pre-op holding room.
Tuesday, April 22, 2008
echo, x-rays, etc.
The pre-op procedures continue this evening and we're gearing up for the late night stretch. Amber snapped a few pics in the x-ray room, so we wanted to share them while we had a break.
Getting ready for the x-ray
Getting ready for the x-ray
Athan wanted to understand the machine before subjecting himself.(Laurie, Amber said you'd be proud of the 'reach!')
in for the night
We're in our room here at the hospital. So far we've just done the admission Q and A with nurses and doctors, and we met the anesthesiologist who will be doing Athan's sedation tomorrow. The tougher pre-op stuff is yet to come - IV, blood tests, chest X-ray, fasting after midnight. I'll try to slip out here and post again before I go to bed.
we go in tonight
The grandmas are here! :) It is so good to see Nana and Grammy again.
Ryan and I will leave Morgan here with them in a few hours to head up to UK. We are supposed to admit to the pediatric floor this evening at about 6. We will spend the evening doing pre-op blood work, chest x-rays, and other preparations. Ryan and I will both stay with him tonight.
In the morning, he will leave us between 7 and 7:30. After that, we won't see him again for 6 or 7 hours. We will get updates from the nurse periodically during the surgery, and I will have my computer with me to post updates as we get them.
Once he has been back in the PICU for at least an hour, we will be able to get in to see him. Then the crucial recovery period begins.
Thank you all again for staying with us through this. I'll post again when we get settled at the hospital tonight.
Ryan and I will leave Morgan here with them in a few hours to head up to UK. We are supposed to admit to the pediatric floor this evening at about 6. We will spend the evening doing pre-op blood work, chest x-rays, and other preparations. Ryan and I will both stay with him tonight.
In the morning, he will leave us between 7 and 7:30. After that, we won't see him again for 6 or 7 hours. We will get updates from the nurse periodically during the surgery, and I will have my computer with me to post updates as we get them.
Once he has been back in the PICU for at least an hour, we will be able to get in to see him. Then the crucial recovery period begins.
Thank you all again for staying with us through this. I'll post again when we get settled at the hospital tonight.
Friday, April 18, 2008
new discoveries at our house
Morgan still needs a nap:
Athan can say "more" in sign language:
Daddy naps best with company:
Other fun findings that don't have illustrations yet:
Athan can finger-feed now, and he loves Puffs.
Athan's jeans (size 12 months) = Morgan capri pants. Not kidding. Morgan can wear Athan's jeans.
Athan can say "Mama" now (though he will only say it if he's sleepy).
Athan can say "more" in sign language:
Daddy naps best with company:
Other fun findings that don't have illustrations yet:Athan can finger-feed now, and he loves Puffs.
Athan's jeans (size 12 months) = Morgan capri pants. Not kidding. Morgan can wear Athan's jeans.
Athan can say "Mama" now (though he will only say it if he's sleepy).
Thursday, April 17, 2008
deep breath...
We met with Dr. Plunkett yesterday. It was nice to finally meet him. His nurse, Korinne, was very helpful, and they both were very willing to answer our questions and explain Athan's surgery to us.
So the plan is to admit to the hospital Tuesday evening. He will begin prep for surgery early Wednesday morning, and we will have to leave him around 7 or 7:30. The surgery will take 3 or 4 hours, and we will be able to see him again after about 5 or 6 hours.
The surgery itself is more invasive than I had hoped - full-blown open heart surgery. Some kinds of ASDs can be fixed using a cath, but the type of defect Athan has (2 ASDs and a leaky mitral valve) requires an open heart procedure. It will require a blood transfusion and the heart/lung machine. Dr. Plunkett will use a piece of Athan's pericardium to form a patch that will cover the holes in his septum. Then he will place some stitches on his valve that will help it seal correctly.
Recovery will start in the PICU for a few days, where Athan will have an NG tube (feeding tube), breathing tube, arterial line IV, a Foley cath, a chest drainage tube, and temporary pacemaker wires. When he is stable enough, we will move to a room on the pediatric floor before we go home. We may be in the hospital about a week, maybe two. Once we're home, we will have to be careful about how we pick him up and hold him for a couple of weeks, then he should be fully recovered.
Nana, Papa, Grammy, and Uncle Brent are coming up to be with us for a few days surrounding surgery. Then Morgan will go back with them to New Mexico for a while so we can be with Athan during the crucial recovery period.
Thank you all so very much for your prayers for our family. We especially request your prayerful attention the morning of Wednesday the 23rd during surgery. We will do our best to keep this site updated during our hospital stay.
So the plan is to admit to the hospital Tuesday evening. He will begin prep for surgery early Wednesday morning, and we will have to leave him around 7 or 7:30. The surgery will take 3 or 4 hours, and we will be able to see him again after about 5 or 6 hours.
The surgery itself is more invasive than I had hoped - full-blown open heart surgery. Some kinds of ASDs can be fixed using a cath, but the type of defect Athan has (2 ASDs and a leaky mitral valve) requires an open heart procedure. It will require a blood transfusion and the heart/lung machine. Dr. Plunkett will use a piece of Athan's pericardium to form a patch that will cover the holes in his septum. Then he will place some stitches on his valve that will help it seal correctly.
Recovery will start in the PICU for a few days, where Athan will have an NG tube (feeding tube), breathing tube, arterial line IV, a Foley cath, a chest drainage tube, and temporary pacemaker wires. When he is stable enough, we will move to a room on the pediatric floor before we go home. We may be in the hospital about a week, maybe two. Once we're home, we will have to be careful about how we pick him up and hold him for a couple of weeks, then he should be fully recovered.
Nana, Papa, Grammy, and Uncle Brent are coming up to be with us for a few days surrounding surgery. Then Morgan will go back with them to New Mexico for a while so we can be with Athan during the crucial recovery period.
Thank you all so very much for your prayers for our family. We especially request your prayerful attention the morning of Wednesday the 23rd during surgery. We will do our best to keep this site updated during our hospital stay.
Tuesday, April 15, 2008
docs and meds and more...
Well, 3 of the 4 of us woke up this morning feeling yucky (sore throats, some coughing, lots of snot again, and eyes full of gunk). Morgan, Athan, and I went to see Dr. Coburn this morning, and came home with a pile of meds for each of us. Antibiotics for all, eye drops for both kids, plus some symptom treaters for Morgan and me. We got everyone started on our stuff this afternoon.
We also saw Athan's urologist, Dr. Schaffer, this afternoon. He will confer with Dr. Irene and decide how best to treat Athan.
Tomorrow we go back to Lex to see Dr. Irene for his endocrinology check-up. Then we will meet Dr. Plunkett and talk about Athan's surgery. I'll do my best to get a post up when we get home tomorrow evening.
We also saw Athan's urologist, Dr. Schaffer, this afternoon. He will confer with Dr. Irene and decide how best to treat Athan.
Tomorrow we go back to Lex to see Dr. Irene for his endocrinology check-up. Then we will meet Dr. Plunkett and talk about Athan's surgery. I'll do my best to get a post up when we get home tomorrow evening.
Thursday, April 10, 2008
We have dates!
They called today!
Initial consultation next Wednesday, the 16th. Pre-op visit the following Tuesday (22nd), and surgery on Wednesday, April 23rd.
Yeah! We are of course apprehensive, because it is heart surgery, after all. But it is quite a relief to have dates on the calendar. Thank you all for praying with us through the wait, and now the surgery. We'll do our best to keep updates going as we know more.
Initial consultation next Wednesday, the 16th. Pre-op visit the following Tuesday (22nd), and surgery on Wednesday, April 23rd.
Yeah! We are of course apprehensive, because it is heart surgery, after all. But it is quite a relief to have dates on the calendar. Thank you all for praying with us through the wait, and now the surgery. We'll do our best to keep updates going as we know more.
Sunday, April 6, 2008
reading week
I think it's funny that seminary doesn't have "spring break." No, we have "reading week." :-) Ryan has been able to read some, but we have mostly tried to relax - kinda taking a deep breath to get us through the rest of the semester and heart surgery.
No, still no word on when the surgery will be. Silly red tape. Of course, if Athan's case was an emergency, we could go to another city for the surgery but we would prefer to be here in Lex. As soon as Dr. Plunkett is able to see patients, we'll be quickly to surgery, we hope.
Athan has an ear infection. Poor guy. He had some congestion and a fever, so we saw Dr. Coburn yesterday, and he diagnosed an ear infection. We got some more meds.
Ah, meds. We use more syringes than forks in a day around here. Especially when he's got an infection of some kind. In just 3 hours time this morning, Athan had to take Cortef (double the normal dose), Synthroid, Digoxin, Furosemide, Loratidine, Cefaclor, Ibuprofen, and drops for his ears. Whew. He is a trooper, though. He has only ever offered mild protest, and most of the time he takes his meds very well. I've been amazed and thankful that it doesn't seem to bother him at all to start every meal with a syringe.
We have, however, discovered that medicines that make most babies drowsy have the opposite effect on Athan. Even Ibuprofen and Tylenol jazz him up, so he doesn't sleep much when we have to give him things to help with fever or congestion. That's why we're up writing and blog and not sleeping at the moment. :)
Morgan seems to enjoy having both Mom and Dad around more this week. She also got to play with her friend Macy this morning, and had so much fun. She notices when we have to pay extra attention to Athan's meds. Not wanting to be left out of the fun, she requests Morgan Medicine. So we fill syringes with juice or water and make sure Morgan gets her meds, too. :)
No, still no word on when the surgery will be. Silly red tape. Of course, if Athan's case was an emergency, we could go to another city for the surgery but we would prefer to be here in Lex. As soon as Dr. Plunkett is able to see patients, we'll be quickly to surgery, we hope.
Athan has an ear infection. Poor guy. He had some congestion and a fever, so we saw Dr. Coburn yesterday, and he diagnosed an ear infection. We got some more meds.
Ah, meds. We use more syringes than forks in a day around here. Especially when he's got an infection of some kind. In just 3 hours time this morning, Athan had to take Cortef (double the normal dose), Synthroid, Digoxin, Furosemide, Loratidine, Cefaclor, Ibuprofen, and drops for his ears. Whew. He is a trooper, though. He has only ever offered mild protest, and most of the time he takes his meds very well. I've been amazed and thankful that it doesn't seem to bother him at all to start every meal with a syringe.
We have, however, discovered that medicines that make most babies drowsy have the opposite effect on Athan. Even Ibuprofen and Tylenol jazz him up, so he doesn't sleep much when we have to give him things to help with fever or congestion. That's why we're up writing and blog and not sleeping at the moment. :)
Morgan seems to enjoy having both Mom and Dad around more this week. She also got to play with her friend Macy this morning, and had so much fun. She notices when we have to pay extra attention to Athan's meds. Not wanting to be left out of the fun, she requests Morgan Medicine. So we fill syringes with juice or water and make sure Morgan gets her meds, too. :)
Monday, March 24, 2008
big day
Morgan went to her very first gymnastics lesson today! She was so excited. So excited, in fact, that once she got there, she was a little tired from being so excited all afternoon. She had a little trouble listening and following instructions. Still, it was her first time in a group setting like that, so she has time to learn that stuff. I think this will be really good for her. Ryan took her to the lesson (I stayed home to feed Athan), and he said the picture opportunities are slim. Here's some "before" pics (thanks for the outfit, Nana) and one semi-action shot:
Sunday, March 23, 2008
i'm back
Athan did not sleep well while Morgan and Ryan were gone, and it has taken me a while to catch up! :) I think we're all finally back to our routine and sleeping more. Not much else to report, so I'll just post some of our recent favorite pics:
Playing together with the big bear in Morgan's room (thanks, Uncle Faba):
Seminary baby:
On dad, they look ok, but on ME...!:
From the living room, I heard "Mom, how did I get up here?":
Playing together with the big bear in Morgan's room (thanks, Uncle Faba):
Seminary baby:
On dad, they look ok, but on ME...!:
From the living room, I heard "Mom, how did I get up here?":
Wednesday, March 19, 2008
Friday, March 14, 2008
OT eval and PT visit
We met Twila today, who came to evaluate Athan's development from the perspective of an occupational therapist. It was an encouraging meeting! She had some suggestions of new things to try with Athan, and she noted some developmental delay. However, she was pleasantly surprised at his skills, and indicated that he only has mild delay. We will be speaking with the rest of our First Steps team to amend our plan, but it looks like we will be seeing Twila more as an occasional consultant rather than a regular therapist.
Laurie also came for PT, and he worked pretty hard today. Athan was still in a good mood despite all his hard work, though he is starting to let us know more of his opinions about some of the things that challenge him in therapy! I think he is already trying to charm his way out of working hard! :0)
I talked to Ryan earlier today, and he and Morgan seem to be having a great trip. Uncle Layne gets to play for the state championship this Saturday. Athan and I wish him lots of luck from Kentucky!
Laurie also came for PT, and he worked pretty hard today. Athan was still in a good mood despite all his hard work, though he is starting to let us know more of his opinions about some of the things that challenge him in therapy! I think he is already trying to charm his way out of working hard! :0)
I talked to Ryan earlier today, and he and Morgan seem to be having a great trip. Uncle Layne gets to play for the state championship this Saturday. Athan and I wish him lots of luck from Kentucky!
Wednesday, March 12, 2008
more meds
Dr. Coburn prescribed another round of antibiotics, and some Robitussin. He is asleep, finally. Poor guy.
I should sleep, too! :)
I should sleep, too! :)
Tuesday, March 11, 2008
They're off
Ryan and Morgan left a few hours ago, and are en route to Albuquerque. Ryan called to report that Morgan has already charmed the pilot into a visit to the cockpit and free TV for the trip to Denver. That's our girl! :)
Athan and I are having a very quiet evening. We were treated to dinner with the Herons, and we've spent the rest of our time assembling his new ExerSaucer. Hopefully, we'll both get some sleep soon.
We go see Dr. Coburn tomorrow to see if we can kick this cough and congestion to be ready for surgery. I'll write when we get home.
Athan and I are having a very quiet evening. We were treated to dinner with the Herons, and we've spent the rest of our time assembling his new ExerSaucer. Hopefully, we'll both get some sleep soon.
We go see Dr. Coburn tomorrow to see if we can kick this cough and congestion to be ready for surgery. I'll write when we get home.
Monday, March 10, 2008
PT today
Laurie came today, but it wasn't our best session ever. He was tired, and he still has this silly cough. We'll go see Dr. Coburn Wednesday morning to see if there's anything else we can do to get him well (in case the surgeon calls and we are nearing surgery).
Morgan and Ryan head out tomorrow to go to New Mexico to watch Uncle Laynee-Pie play in the state tournament. Athan and I will be staying here and listening in on the Internet. Go Wildcats!
Morgan and Ryan head out tomorrow to go to New Mexico to watch Uncle Laynee-Pie play in the state tournament. Athan and I will be staying here and listening in on the Internet. Go Wildcats!
Saturday, March 8, 2008
a lesson on inedibles
Just when you think you're a good parent sometimes, your daughter escapes the watchful eyes of her mother (Ryan wants it clear that he was home with Athan) and 8 other adults to sneak into the neighbor's bathroom and eat 3/4 of a tube of toothpaste. An evening that includes a call to Poison Control is not likely to win me the nomination for Mother of the Year, huh? (She's fine. She drank a little milk - which we're told takes care of the fluoride - and has not complained of feeling bad at all.)
Athan still has this lingering snot/cough thing. Our busy week turned into a week of canceling and rescheduling appointments. Unless he seems too sick, we'll start up PT again on Monday, and go from there.
Athan still has this lingering snot/cough thing. Our busy week turned into a week of canceling and rescheduling appointments. Unless he seems too sick, we'll start up PT again on Monday, and go from there.
Tuesday, March 4, 2008
today
Athan is sick again, poor guy. A head cold. Lots of snot and a hacking cough, plus the occasion triggering of the gag reflex by the drainage. Yucky. We postponed the appointment with the OT.
We did, however, keep the appointment with cardiology this morning. Still nothing new about timing. We don't have dates yet, just a sequence. As soon as the surgeon's licensure paperwork clears, they will call us for an initial consult. Then we'll schedule a pre-op visit for bloodwork, etc. Then surgery. All this in the next couple months.
We also learned more about Athan's condition and the surgery. It cleared up some misconception and old information for us: First, we thought Athan had an ASD (hole in the wall between the upper chambers of his heart) and a VSD (hole in the wall between the lower chambers). In fact the VSD he had at birth has closed on its own! :) He still has 2 holes, but they are both in the upper chamber. Also, one of his valves is leaking. Initially, we weren't sure if they would address this surgically, but we found out today they can and will. It sounds simple - "a couple of stitches" for the valve is how Dr. K explained it. Even with the valve issue, Athan's proceedure will not be very complex, as heart surgeries go.
Ok, gotta go. Mr. Snot needs Mama! :)
We did, however, keep the appointment with cardiology this morning. Still nothing new about timing. We don't have dates yet, just a sequence. As soon as the surgeon's licensure paperwork clears, they will call us for an initial consult. Then we'll schedule a pre-op visit for bloodwork, etc. Then surgery. All this in the next couple months.
We also learned more about Athan's condition and the surgery. It cleared up some misconception and old information for us: First, we thought Athan had an ASD (hole in the wall between the upper chambers of his heart) and a VSD (hole in the wall between the lower chambers). In fact the VSD he had at birth has closed on its own! :) He still has 2 holes, but they are both in the upper chamber. Also, one of his valves is leaking. Initially, we weren't sure if they would address this surgically, but we found out today they can and will. It sounds simple - "a couple of stitches" for the valve is how Dr. K explained it. Even with the valve issue, Athan's proceedure will not be very complex, as heart surgeries go.
Ok, gotta go. Mr. Snot needs Mama! :)
Sunday, March 2, 2008
more movement
We're working on a way to post a video of Athan's newfound mobility skills, but I can hardly wait to show you! He is much more motivated to move around now. It may be a while before he figures out he can crawl, but he can certainly get where he wants to go now! :)
We have a full week for our boy: We have physical therapy on Monday. Tuesday morning we'll go in to see cardiology (Dr. K wants to make sure the site of his cath is healing, and talk to us in detail about the results and surgery). That afternoon we'll have an evaluation by an occupational therapist (through First Steps) to see how Athan is doing with small motor skills. Thursday morning Amanda will be here for his VIPS therapy, and Laurie again Thursday afternoon for physical therapy. Whew! I'll post updates when I have time.
We have a full week for our boy: We have physical therapy on Monday. Tuesday morning we'll go in to see cardiology (Dr. K wants to make sure the site of his cath is healing, and talk to us in detail about the results and surgery). That afternoon we'll have an evaluation by an occupational therapist (through First Steps) to see how Athan is doing with small motor skills. Thursday morning Amanda will be here for his VIPS therapy, and Laurie again Thursday afternoon for physical therapy. Whew! I'll post updates when I have time.
Thursday, February 28, 2008
a simple new skill
A few minutes ago, my son rolled from his back to his tummy and "skooched" his way forward 6 or 8 inches in order to chew on several of his sister's books.
I teared up a little.
I teared up a little.
Wednesday, February 27, 2008
long night, and welcome relief
We had another sleepless night list night. Athan slept about 45 minutes between 10 last night and 4 this morning. Poor kiddo. It just seemed like he could not relax enough to sleep. Dr. Irene said it wasn't endo, but I'm still convinced it was his stress dose of Cortef keeping him up. We're back to regular maintenance dose today, and he has had a MUCH better day.
Also, welcome with us our new friend Charis. She will be here 3 mornings a week to help with the kids so Ryan can work on school and I can sleep! :) If I'm not asleep, I can get errands or just some "me time" during those hours. Charis is a wonderful woman who is great with the kids and very patient with me, too! :) We are so very grateful to have her in our lives.
Also, welcome with us our new friend Charis. She will be here 3 mornings a week to help with the kids so Ryan can work on school and I can sleep! :) If I'm not asleep, I can get errands or just some "me time" during those hours. Charis is a wonderful woman who is great with the kids and very patient with me, too! :) We are so very grateful to have her in our lives.
Tuesday, February 26, 2008
cardio
We did hear from the cardiologist. Basically, they just confirmed what we already knew: Athan needs to have surgery, and it will be sometime in the next couple of months. The new surgeon just moved here from California, and he is waiting on his Kentucky licensure paperwork to go through. As soon as he is officially able to start work, Athan will be one of the first surgeries scheduled. They will be calling us for a pre-op visit as soon as they can (which could be days, weeks, or up to a month). I'll write again when we hear from them, so you'll know when we know.
Thanks for staying near us with prayers, comments, e-mails, and calls. We remain awed and grateful to all of you.
Thanks for staying near us with prayers, comments, e-mails, and calls. We remain awed and grateful to all of you.
Morgan's sleeping, Athan's not
Morgan is, for the first time since Athan was born, consistently sleeping through the night in her own bed and taking good naps. Yeah for Morgan! :)
Athan, however, was awake yesterday from 9 a.m. to 8 p.m., with the exception of about 20 minutes. Crazy, huh?! He was a little extra fussy, a lot extra clingy, but as long as I was holding him, he was happy. It is tough to guess a cause with this kiddo - heart stuff? endo? bronchiolitis? meds? or normal baby stuff - constipation or tummy ache? aaahh! I don't know, exactly, but after eliminating one thing then the other, I think it has to do with his Cortef dose. We'll be back on his normal med schedule tomorrow, so hopefully that will mean more sleep for us all - especially baby boy!
Athan, however, was awake yesterday from 9 a.m. to 8 p.m., with the exception of about 20 minutes. Crazy, huh?! He was a little extra fussy, a lot extra clingy, but as long as I was holding him, he was happy. It is tough to guess a cause with this kiddo - heart stuff? endo? bronchiolitis? meds? or normal baby stuff - constipation or tummy ache? aaahh! I don't know, exactly, but after eliminating one thing then the other, I think it has to do with his Cortef dose. We'll be back on his normal med schedule tomorrow, so hopefully that will mean more sleep for us all - especially baby boy!
Saturday, February 23, 2008
feeling better
Athan is still raspy and coughing, but it is also evident that he just feels much better. He is sleeping and eating well, and he is playing more when he is awake. We will still be pretty cautious with him through the weekend, but I think he is certainly heading in a good direction.
Ryan and I have both taken some good naps the past couple of days, so I think we've recovered from the short night before his cath.
Ryan and I have both taken some good naps the past couple of days, so I think we've recovered from the short night before his cath.
Thursday, February 21, 2008
saw Dr. Coburn this a.m.
After speaking to the cardiologists yesterday, we decided it was best just to see Athan's pediatrician. Dr. Coburn worked us in this morning. Athan has bronchiolitis (bronchitis for babies, kinda). He gave us meds (antibiotic and some stuff to break up the congestion in his chest), so we'll get those in him next time he eats.
The good news is that this is an upper respiratory infection. If the infection was in his lower respiratory system, he would probably have to be hospitalized because of what that kind of infection can do with his heart condition. Hopefully the meds will prevent it from spreading.
I also have a call into Dr. Irene to see how we should adjust his endo medications in light of his recent cath and his current illness. We should have all the dosages worked out and in him in a couple hours.
The good news is that this is an upper respiratory infection. If the infection was in his lower respiratory system, he would probably have to be hospitalized because of what that kind of infection can do with his heart condition. Hopefully the meds will prevent it from spreading.
I also have a call into Dr. Irene to see how we should adjust his endo medications in light of his recent cath and his current illness. We should have all the dosages worked out and in him in a couple hours.
Wednesday, February 20, 2008
Athan's sick
We've talked to Dr. Vranicar (surgeon who did the procedure yesterday), Katie (Dr. K's nurse), and his pediatrician, and everyone seems to agree that it is NOT a side-effect of the cath. He probably just picked up a bug or something at the hospital. He has quite a rattle in his breathing and has been coughing off and all all day. He had a slight fever, but not for long. He is acting like his usual happy self most of the time, and he's sleeping a little more than usual. We'll keep watching and keep you updated.
Tuesday, February 19, 2008
Got to come home-
We recovered back on the pediatric floor for a few hours, and left the hospital around 4. We're home now, and everyone seems to be tired, but good. Athan is not quite himself, of course, but he has played some this afternoon and is eating well. Morgan had so much fun with her friends she didn't want to come home! :) Ryan and I are groggy, but functional. It'll take us a couple of days to get the sleep back, I think.
We were blessed with dinner for the next two nights - thank you friends. We should be able to have a slow going evening for now.
Once again, how can we possibly thank you for your prayers?
We were blessed with dinner for the next two nights - thank you friends. We should be able to have a slow going evening for now.
Once again, how can we possibly thank you for your prayers?
the network let me on this time
Athan's procedure went well. He is still asleep, and looks like he's enjoying the rest!
We just spoke to Dr. Vandicar, who did the catheter on our boy. He said that everything went smoothly, no complications. He checked the pressures in the pulmonary arteries, which has been the main area of concern. "Resistance" is higher than it should be with just and ASD/VSD, but not so high that treatment/surgery needs to be immediate - elevated, but not critical. Dr. K will look at the data, and the cardio team will discuss in in their next meeting (probably next Monday afternoon).
I'll try to post again when he wakes up, and we'll try to get pictures up later this afternoon.
amberly
We just spoke to Dr. Vandicar, who did the catheter on our boy. He said that everything went smoothly, no complications. He checked the pressures in the pulmonary arteries, which has been the main area of concern. "Resistance" is higher than it should be with just and ASD/VSD, but not so high that treatment/surgery needs to be immediate - elevated, but not critical. Dr. K will look at the data, and the cardio team will discuss in in their next meeting (probably next Monday afternoon).
I'll try to post again when he wakes up, and we'll try to get pictures up later this afternoon.
amberly
Post by Proxy
Last night went pretty well with all the fasting and prep for the procedure. Both mom and baby didn't get much sleep, but otherwise no problems. Athan is in the procedure right now and will be for another hour or so. Amber and Ryan are in the waiting room, and Morgan is at Jason and Hannah's house, playing with Margot.
It will be about another hour before the procedure is over, and a little while longer before Amber and Ryan can get reliable internet access. In the meantime, we'll try to do these proxy posts to keep everyone updated. Thank you all for your prayers during this time.
--Uncle Josh
It will be about another hour before the procedure is over, and a little while longer before Amber and Ryan can get reliable internet access. In the meantime, we'll try to do these proxy posts to keep everyone updated. Thank you all for your prayers during this time.
--Uncle Josh
Monday, February 18, 2008
We're at the hospital
Admission went well. Started an IV (on his right side so that his head has to turn left). He'll stop nursing at 2am and switch to the pedialite. At 6am he'll be off liquids completely. The procedure is scheduled for 8 o'clock. The procedure takes about two hours. Recovery afterward will be between 4 and 5 hours. We don't have as much computer access as we've had in the past, so we'll post when we can.
Athan is a real trooper. He was pretty upset about the IV, but after a little rest, he's smiling and playing.
Athan is a real trooper. He was pretty upset about the IV, but after a little rest, he's smiling and playing.
to the hospital
We're heading into Lex in about an hour or so. We'll eat, then be admitted to the pediatric floor at 8 p.m. After we get all settled in, Ryan will head back out here to put Morgan to bed. I'll stay with Athan tonight, and Ryan will be back first thing in the morning to go with us over to the heart building for his cath. I'm taking the computer, so I'll try to post again after we get settled in at the hospital tonight.
Oh - Athan had a great day of physical therapy today. He worked really hard on his back and a little with his arms. I wish I could have captured the way he was imitating Laurie chewing her gum! He even remembered the gum from last appointment, and he kept "chewing" and looking at her mouth, so she made a special trip to her car to get gum and keep him entertained. So funny! :) We'll see Laurie again on Wednesday for our planning meeting, and Friday for his therapy.
Oh - Athan had a great day of physical therapy today. He worked really hard on his back and a little with his arms. I wish I could have captured the way he was imitating Laurie chewing her gum! He even remembered the gum from last appointment, and he kept "chewing" and looking at her mouth, so she made a special trip to her car to get gum and keep him entertained. So funny! :) We'll see Laurie again on Wednesday for our planning meeting, and Friday for his therapy.
Friday, February 15, 2008
Morgan
Of course this blog was started to keep up with Athan's Journey, but many of you wonder about our Morgan as well. I try to but in blips about her here and there, but here's a whole post to give you a glimpse into her world right now:
She loves being outside, and winter weather doesn't allow for nearly enough. Still, whenever possible, we bundle her up and set her free:
The only setback to being outside is that there are not pottys. She doesn't think it is worth the trip back inside, lest we make her stay there, so she has come in with wet pants one more than one occasion. That is a true lover of the outdoors, I say.
When trapped inside, we do our best to find diversion. She enjoys art in may forms. Sculpting (making snakes and snowmen out of pink Play-Doh), painting (with the extra peanut butter and jelly that dripped out of her lunch onto the table), and coloring, of course. Here are some examples from her on-going Green period:
She gets to play with Margot on occasion, and she spent the day with the three Crisp boys during Athan's last appointment (Thanks again to Erin!). We always look forward to time she gets to spend with friends, and when she's here at home, these "friends" are a royal treat, accompanying us for most activities of late:
She is endlessly creative. For instance, these instruments here were transformed inside of an hour from drumsticks to medical instruments for giving Mom "check-ups" to spoons for serving imaginary soup back to "whisk-es."
She loves being outside, and winter weather doesn't allow for nearly enough. Still, whenever possible, we bundle her up and set her free:
The only setback to being outside is that there are not pottys. She doesn't think it is worth the trip back inside, lest we make her stay there, so she has come in with wet pants one more than one occasion. That is a true lover of the outdoors, I say.When trapped inside, we do our best to find diversion. She enjoys art in may forms. Sculpting (making snakes and snowmen out of pink Play-Doh), painting (with the extra peanut butter and jelly that dripped out of her lunch onto the table), and coloring, of course. Here are some examples from her on-going Green period:
She gets to play with Margot on occasion, and she spent the day with the three Crisp boys during Athan's last appointment (Thanks again to Erin!). We always look forward to time she gets to spend with friends, and when she's here at home, these "friends" are a royal treat, accompanying us for most activities of late:
She is endlessly creative. For instance, these instruments here were transformed inside of an hour from drumsticks to medical instruments for giving Mom "check-ups" to spoons for serving imaginary soup back to "whisk-es."
All in all, she seems to be doing well. Her appetite is finally back. The magic words right now are "burrito" (meaning anything at all wrapped in a tortilla), and "salad" (yes, she suddenly loves salad). She is super sweet to Athan, and has taken up calling him "Blue Eyes" (which makes her Brown Eyes, me Green Eyes, and Dad Brown Eyes, of course). She is sleeping better - whew. After lots of travel followed by some sickness, it is good to have Morgan back in full swing!
PT
Athan, despite being a bit off schedule and pretty tired, still worked hard for Laurie during his PT appointments. You can see in the pic that she's working to get him to realize he can bear weight with his arms, and he is finally catching on (a little).Yesterday she repeated the assessment that he took back in late August to measure his progress. According to this particular tool, Athan's developmental age is 5 months. Of course that is still a delay, but it is great progress from where he was before. We were glad to see that he has improved so much!
Next week (Wed.) we'll meet with our whole First Steps team to discuss his plan for the next few months.
Wednesday, February 13, 2008
Dr. Irene today
We went back to see Dr. Irene, Athan's endocrinologist, today. As always, she was her cheerful, helpful self! :) Aside from the usual check-up and blood work (yuk), Dr. Irene helped us iron out some of the logistics of taking care of his endo stuff during his cardio stuff ahead.
For example, his heart cath next Tuesday: We have to triple-dose his Cortef the day before, during, and after. Also, because he has to fast after midnight the day of the procedure (Tuesday), she decided it would be best for Athan to be admitted to the pediatric floor at the hospital Monday evening so we can monitor his blood sugar and give him IV dextrose if we need to while he is NPO (fasting). So we will be heading up to UK Monday evening (around 8) to check in, he will start fasting at midnight, his cath is scheduled for 8 a.m., the procedure takes about 2 hours, then after 4 or 5 hours recovery, we can go home.
For example, his heart cath next Tuesday: We have to triple-dose his Cortef the day before, during, and after. Also, because he has to fast after midnight the day of the procedure (Tuesday), she decided it would be best for Athan to be admitted to the pediatric floor at the hospital Monday evening so we can monitor his blood sugar and give him IV dextrose if we need to while he is NPO (fasting). So we will be heading up to UK Monday evening (around 8) to check in, he will start fasting at midnight, his cath is scheduled for 8 a.m., the procedure takes about 2 hours, then after 4 or 5 hours recovery, we can go home.
Monday, February 11, 2008
Our next few months
Ryan and I were talking last night and looking at what lies ahead for the Strebeck family, especially in the next few months. I think it was our way of mentally digging in for another stretch. We pretty much stay in "survive the crisis" mode for a while. Athan really needs to stay healthy until heart surgery, which means lots of stay-at-home time for at least one of his parents. The other will be making sure Morgan doesn't have too much stay-at-home time. :) Then we have the heart cath, surgery, and recovery. We'll be revamping his First Steps plan (that's the program through which he gets physical therapy), maybe adding occupational therapy as well. He will see a urologist per recommendation of his geneticist, as well as having a vision and hearing test. We'll have to keep up his regular visits with his endocrinologist and pediatrician.
And school starts tomorrow.
We're happy to do it, and we want to do it well. I write to ask, again, for your prayers. This year has been a tough one, and the next may not be smooth sailing, exactly. Right now, I'm just asking the Lord for the energy to do what needs to be done, and to do it with deep love.
And school starts tomorrow.
We're happy to do it, and we want to do it well. I write to ask, again, for your prayers. This year has been a tough one, and the next may not be smooth sailing, exactly. Right now, I'm just asking the Lord for the energy to do what needs to be done, and to do it with deep love.
physical therapy
Athan did well in his therapy, I think. Laurie said she could tell he is getting much stronger. He is offering much more resistance with his arms, controlling his head better, and his torso is working harder when he tries to balance and move. It seemed like her biggest concern is his "round sitting." Basically, it's like a super-slouch. We'll be working hard on getting him to hold his back straighter.
I'll try to grab the camera and post some of the pics soon.
I'll try to grab the camera and post some of the pics soon.
Friday, February 8, 2008
mom finally went down
Everyone has been sick except me. Until now. I have mastitis and a low grade flu. Ryan is running like a crazy man to take care of all 3 of us, and doing a stellar job. Hopefully I'll feel better when he starts classes on Tuesday.
Athan is having physical therapy downstairs right now, so I'll post later this evening to report how that goes.
Upcoming appointments: We see endocrinology next Wednesday (13th), and his heart cath is a week from Tuesday (19th).
Athan is having physical therapy downstairs right now, so I'll post later this evening to report how that goes.
Upcoming appointments: We see endocrinology next Wednesday (13th), and his heart cath is a week from Tuesday (19th).
Wednesday, February 6, 2008
Tuesday, February 5, 2008
Heart Cath
Ok, good news and not-as-good news:
Good news - he's off of the oxygen, so maybe he'll get some better sleep! :-)
Not-as-good: His heart didn't do as well as Dr. K had hoped it would do on the oxygen, so Athan will have to have a heart cath before surgery. Katie will be calling us soon with an appointment for that, which will be an all-day (but not over-night) thing at the hospital.
The surgery will patch two holes in Athan's septum - one between the upper chambers (ASD) and one between the lower chambers (VSD). The steps we are taking now (such as the oxygen and the upcoming heart cath) will help tell the doctors what kind of post-op care Athan will need. After surgery like the one Athan will have, sometimes the lungs have a difficult time adjusting to the changes in blood pressure. The information they are gathering now will help them anticipate what specific helps he will need after surgery for his lungs to adjust to a more normal blood pressure.
As to timing, we are still not sure exactly when the surgery will be. We know more a sequence of events than a calendar date. The next step is the cath, which should be sometime in the next two or three weeks. Then the whole cardio team will discuss the results. If they decide the surgery needs to be very soon, we may have to travel to Cincinnati to have the surgery. If he can wait just a bit longer, the surgeon here in Lex will do it.
I always feel like I am leaving out something, so post a comment with any questions I haven't answered.
Thanks for hanging in there with us!
Good news - he's off of the oxygen, so maybe he'll get some better sleep! :-)
Not-as-good: His heart didn't do as well as Dr. K had hoped it would do on the oxygen, so Athan will have to have a heart cath before surgery. Katie will be calling us soon with an appointment for that, which will be an all-day (but not over-night) thing at the hospital.
The surgery will patch two holes in Athan's septum - one between the upper chambers (ASD) and one between the lower chambers (VSD). The steps we are taking now (such as the oxygen and the upcoming heart cath) will help tell the doctors what kind of post-op care Athan will need. After surgery like the one Athan will have, sometimes the lungs have a difficult time adjusting to the changes in blood pressure. The information they are gathering now will help them anticipate what specific helps he will need after surgery for his lungs to adjust to a more normal blood pressure.
As to timing, we are still not sure exactly when the surgery will be. We know more a sequence of events than a calendar date. The next step is the cath, which should be sometime in the next two or three weeks. Then the whole cardio team will discuss the results. If they decide the surgery needs to be very soon, we may have to travel to Cincinnati to have the surgery. If he can wait just a bit longer, the surgeon here in Lex will do it.
I always feel like I am leaving out something, so post a comment with any questions I haven't answered.
Thanks for hanging in there with us!
Monday, February 4, 2008
talked to Katie
Katie is the o-so-helpful nurse we usually speak with at the cardiologist's office. Ryan called early this morning to ask about an appointment, and she called back this afternoon with a time: 8:30 in the morning. Dr. K wants to do another ECHO while he is on oxygen, so that is what we will do in the morning. He has tolerated this test well in the past (it's not invasive or painful, really), so it should be an easy appointment for Athan. The results are immediate, so we should be able to report much more tomorrow sometime.
(note: Katie mentioned that the new pediatric cardiology surgeon is just getting started/oriented here, so unless Athan's case is emergent, the surgery may be more like March/April in stead of Feb/March like we were thinking before. We'll know more tomorrow)
(note: Katie mentioned that the new pediatric cardiology surgeon is just getting started/oriented here, so unless Athan's case is emergent, the surgery may be more like March/April in stead of Feb/March like we were thinking before. We'll know more tomorrow)
Sunday, February 3, 2008
HOME! :)
We made it. Everyone is well. I was a little more than giddy to be in my own house again. I love my bed! :)
Athan is doing well. He is sleeping alright, but not great. I'm interested to see how he adjusts to being back home. He was sleeping so well before we left for New Mexico, but he was not on the oxygen then, either. I think that blasted tube wakes him up and keeps him from going back to sleep comfortably. Ugh. We're going to call the cardio office Monday to schedule his appointment. I'll post when we know. Also, our PT is scheduled for Friday. We're excited to see Laurie again, and I'll write an update on that, too.
Morgan is also doing well. She was so glad to be at Mom and Dad's house. She played alone for two hours when we got home, and then spent a very fun evening playing with Margot while we ate dinner at their house. She missed her friends.
So did Ryan and I. Adam, Dru, and J.D. met us at Bellacino's for lunch, which was a very sweet surprise! Then we got to see most of the rest of the crew last night at dinner. We're very much looking forward to sing Dr. Alan, Sarah, and Baby Lucy when they get back.
Athan is doing well. He is sleeping alright, but not great. I'm interested to see how he adjusts to being back home. He was sleeping so well before we left for New Mexico, but he was not on the oxygen then, either. I think that blasted tube wakes him up and keeps him from going back to sleep comfortably. Ugh. We're going to call the cardio office Monday to schedule his appointment. I'll post when we know. Also, our PT is scheduled for Friday. We're excited to see Laurie again, and I'll write an update on that, too.
Morgan is also doing well. She was so glad to be at Mom and Dad's house. She played alone for two hours when we got home, and then spent a very fun evening playing with Margot while we ate dinner at their house. She missed her friends.
So did Ryan and I. Adam, Dru, and J.D. met us at Bellacino's for lunch, which was a very sweet surprise! Then we got to see most of the rest of the crew last night at dinner. We're very much looking forward to sing Dr. Alan, Sarah, and Baby Lucy when they get back.
Friday, February 1, 2008
did I say Friday?
I meant Saturday. The kids and I will fly out with Papa Sid first thing in the morning, provided Morgan is feeling well enough to travel. She has been sick all day today. Athan's fever I wrote about cleared up mid-week, and he is doing fine. Because of all the help I've had today from Nana Lena, Aunt Loy, and Grammy Tammy, I think Athan and I have kept from getting Morgan's bug. We should be back in Wilmore just after lunch tomorrow.
Tuesday, January 29, 2008
updated plans
We just wouldn't be the Strebecks if we didn't make plans and then change them. :)
Papa's plane is in the shop, and won't be ready in time for the scheduled departure. Looks like we'll be home Friday instead of Wednesday.
Papa's plane is in the shop, and won't be ready in time for the scheduled departure. Looks like we'll be home Friday instead of Wednesday.
Sunday, January 27, 2008
I should be sleeping
I wanted to drop a few lines about our plans before I crash. The kids and I will be leaving New Mexico early Wednesday morning, and will be back in Kentucky that evening (many thanks, again, to Papa Sid). Ryan will be driving sometime late in the week, and join us in Wilmore Friday or Saturday. It will be no small miracle if we manage to get all of our stuff gathered back up and into the van to be re-wedged into our place in Kentucky. Ahhh, seminary life.
Also, we had a (very belated) family birthday party for Morgan today. It was a good time, and I hope to get some pics up soon.
Athan is not feeling too well. He had a fever last night, and some again this evening. Please pray that he will get well before we travel home.
Also, we had a (very belated) family birthday party for Morgan today. It was a good time, and I hope to get some pics up soon.
Athan is not feeling too well. He had a fever last night, and some again this evening. Please pray that he will get well before we travel home.
Sunday, January 20, 2008
Saturday, January 19, 2008
a few pics
Josh gave us a new camera for Christmas! The guys have been playing with the new toy to learn all the gadgets and gizmos, and I stole a couple of the "practice shots" to share with you. They chose great subjects, huh?!
physical therapy
Man, do we miss Laurie. Still, we've done our best to work with Athan on his physical therapy during our time here in Clovis. We'll let you know what the professional thinks when we get to start his PT appointments again back in Wilmore, but until then here's my humble opinion:
He continues to make great progress holding his head up while sitting and on his tummy. He is also working harder at balancing himself when he's sitting up, doing more and more of the work himself. He can roll from his tummy to his back with very little effort, which is a blessing and curse. It is really tough to get any "tummy time" when he just rolls immediately over to his back and is reluctant to return! I think he CAN roll from his back to his tummy (he's done it twice that I've seen), but he is unmotivated. He just likes to be on his back more.
We're also trying to work with him to get him to do more with his arms. He is reaching for toys, passing them from hand to hand, and putting EVERYTHING in his mouth. :-) We're also trying to get him to offer more resistance with his arms. Just the past couple of days, he's shown us a little more "push." See?:
We'll stay on top of our workouts, and look forward to getting back home and get a more educated progress report!
He continues to make great progress holding his head up while sitting and on his tummy. He is also working harder at balancing himself when he's sitting up, doing more and more of the work himself. He can roll from his tummy to his back with very little effort, which is a blessing and curse. It is really tough to get any "tummy time" when he just rolls immediately over to his back and is reluctant to return! I think he CAN roll from his back to his tummy (he's done it twice that I've seen), but he is unmotivated. He just likes to be on his back more.
We're also trying to work with him to get him to do more with his arms. He is reaching for toys, passing them from hand to hand, and putting EVERYTHING in his mouth. :-) We're also trying to get him to offer more resistance with his arms. Just the past couple of days, he's shown us a little more "push." See?:
We'll stay on top of our workouts, and look forward to getting back home and get a more educated progress report!
Thursday, January 17, 2008
took me a while
Sorry! Ryan's here. He had to spend an unexpected night in Dallas (thank you Bryan and Natalie), and flew into Lubbock Wednesday morning early. Jordan and Brent got him to Clovis about 10 a.m. Morgan and Athan were both obviously excited to have Daddy back! (I was asleep - we'd had a long night - and arose for a groggy greeting about noon. Oh, the life of a parent. :-)
More soon...
More soon...
Tuesday, January 15, 2008
Athan slept!! (and Ryan probably didn't)
After toying with many of the factors that may have been contributing to his sleepless nights, I decided to try and switch his once-a-day dose of Genotropin (growth hormone) from 6 p.m. to 6 a.m. It worked. Apparently, the further he gets from that medicine, the better he sleeps. I think this is newly manifesting because we recently got off of his phenobarbitol. Up until two weeks ago, he was getting a sedating medication every time he got growth hormone. I think we're seeing some new side effects that were "hidden" by the extra med.
So this morning I gave the growth hormone at 6 a.m., and he didn't nap well until after noon. Still, it is better for him and for me that we both slept well last night.
Morgan got to be a radio star this morning. Her Grammy does a weekly radio appearance for the coffee shop, and Morgan got to go with her and make her very first public performance. I believe she said "Go Wildcats, go Uncle Layne!"
Ryan is back in the U.S., but he was too late to get a boarding pass for his connecting flight out of JFK. I'll post again when I hear from him about the next step.
So this morning I gave the growth hormone at 6 a.m., and he didn't nap well until after noon. Still, it is better for him and for me that we both slept well last night.
Morgan got to be a radio star this morning. Her Grammy does a weekly radio appearance for the coffee shop, and Morgan got to go with her and make her very first public performance. I believe she said "Go Wildcats, go Uncle Layne!"
Ryan is back in the U.S., but he was too late to get a boarding pass for his connecting flight out of JFK. I'll post again when I hear from him about the next step.
Sunday, January 13, 2008
movie, long night, and a meltdown
Athan didn't sleep much last night, but he is his usual smiley self again today. Morgan had a major meltdown (tears, sobbing, confusion, frustration) this afternoon at nap time, but she is sleeping soundly now. Apparently, Athan doesn't need any sleep and Morgan always needs more. :-)
Before all that drama, Aunt Loy and Uncle Joe came to keep the kids so Mom, Tim, Logan, and I could go to a movie. SO fun! I love going to the movies, and as you can guess, tis a rare treat these days. Thanks guys! :)
Before all that drama, Aunt Loy and Uncle Joe came to keep the kids so Mom, Tim, Logan, and I could go to a movie. SO fun! I love going to the movies, and as you can guess, tis a rare treat these days. Thanks guys! :)
Saturday, January 12, 2008
third
A tooth on top. I am, of course, glad he is getting his teeth. I will miss the toothless grin, though! :)
Friday, January 11, 2008
more eating, but less sleeping
He really likes cereal. He really dislikes his oxygen tube.
Amy, Cap, and Ella visited today. Morgan and Cap had lots of fun!
Morgan and I also got to run up to the gym and catch part of Uncle Layne's basketball game. Morgan got her picture taken with Wiley the Wildcat, played with Tom and Lori, and got to see Nana and Papa, too! What a night.
Amy, Cap, and Ella visited today. Morgan and Cap had lots of fun!
Morgan and I also got to run up to the gym and catch part of Uncle Layne's basketball game. Morgan got her picture taken with Wiley the Wildcat, played with Tom and Lori, and got to see Nana and Papa, too! What a night.
Wednesday, January 9, 2008
oh - a LAST among the many firsts
I almost forgot - we gave his LAST dose of phenobarbitol last week. Yep, we're done! :) He seems to be doing just fine off the medicine. It was a precautionary anti-seizure medication, and he still has shown now signs of any kind of seizure activity. Woo-hoo! :) The weaning process took a whole month, and I think he was fussy sometimes because of the withdrawal. Also, because he was used to getting a does of sedating medicine before bed, it may be contributing to him not sleeping as well. Still, being off the med is good news, no matter what else is going on! :)
another first
Cereal. We put Athan in his high chair and fed him his first round of baby cereal. It was a big hit! He seemed really excited about it. He also didn't seem to have any trouble with the swallowing, which was a concern because of his low muscle tone and bifed epiglottis. No tongue thrusting and no grimace - just a little cereal on the cheeks and the usual Athan smile.
He is doing really well. Night time is a little rough right now. He isn't sleeping as well - I think the dry air of the desert in the winter, plus the extra drying factor of the oxygen, just bug him. He'll go to sleep alright, but wakes up often, usually rubbing his nose and eyes. He's having a tough time getting back to sleep, which I'm not used to, so we're both pretty sleepy. I'm ready to get back to see cardiology so we can hopefully stop this oxygen and get some sleep!
Morgan is being a very helpful big sister, and seems to enjoy talking to her "bubba" more and more. "Look, he's smiling at me!" she'll say with typical Morgan glee. She is also having so much fun with all the grandmas and great-grandmas and aunts and uncles and friends who want to play with her. Last night she got to go to the basketball game to watch Uncle Layne, and I hear she enjoyed making Uncle Brent and Aunt Jenn chase her around!
Ryan is in India, still. He took a class through the seminary that includes a trip to a ministry in India that has a seminary and an orphanage on site. I hope he'll write a blog when he gets back to explain the trip more. I've talked to him three times, and it seems to be going well. The team has been passing around a tummy bug, that has knocked them out one at a time for about 24 or 48 hours. Ryan had it last we talked, but I think he's feeling better. They teach classes at the seminary in the morning, and help with the kids in the afternoon, I think.
He is doing really well. Night time is a little rough right now. He isn't sleeping as well - I think the dry air of the desert in the winter, plus the extra drying factor of the oxygen, just bug him. He'll go to sleep alright, but wakes up often, usually rubbing his nose and eyes. He's having a tough time getting back to sleep, which I'm not used to, so we're both pretty sleepy. I'm ready to get back to see cardiology so we can hopefully stop this oxygen and get some sleep!
Morgan is being a very helpful big sister, and seems to enjoy talking to her "bubba" more and more. "Look, he's smiling at me!" she'll say with typical Morgan glee. She is also having so much fun with all the grandmas and great-grandmas and aunts and uncles and friends who want to play with her. Last night she got to go to the basketball game to watch Uncle Layne, and I hear she enjoyed making Uncle Brent and Aunt Jenn chase her around!
Ryan is in India, still. He took a class through the seminary that includes a trip to a ministry in India that has a seminary and an orphanage on site. I hope he'll write a blog when he gets back to explain the trip more. I've talked to him three times, and it seems to be going well. The team has been passing around a tummy bug, that has knocked them out one at a time for about 24 or 48 hours. Ryan had it last we talked, but I think he's feeling better. They teach classes at the seminary in the morning, and help with the kids in the afternoon, I think.
Tuesday, January 8, 2008
other tooth
Finally, it made it through. Yesterday afternoon.
He's still fighting the oxygen off and on. Not sleeping real well.
Morgan is great. She had lunch with Uncle Jordan and Papa Sid today. Doesn't get much better than that!
My mom did the tough part of the night shift last night - thanks, Grammy!
He's still fighting the oxygen off and on. Not sleeping real well.
Morgan is great. She had lunch with Uncle Jordan and Papa Sid today. Doesn't get much better than that!
My mom did the tough part of the night shift last night - thanks, Grammy!
Saturday, January 5, 2008
teething
Yep. Teething. We officially have 1 tooth, and another right beside it that won't be far behind. I think they're hurting him pretty badly, and we've had a couple of long nights because of it.
Both kids are asleep - I'm going to nap! :)
Both kids are asleep - I'm going to nap! :)
Wednesday, January 2, 2008
able to write again, I think...
I know it has been a while, and I have several blanks to fill in. I'll at least get started:
Christmas, scaled-down though it was, still came with a little craziness. We had to work at the logistics of getting Ryan and Morgan to family things on time while Athan and I kept his eating/sleeping/meds schedule on track. I think we did fairly well - he only had one really fussy night. And Morgan... well, I just wish you could have seen her this year! She is old enough to open her own gifts and get excited about all of them. She got to spend time with so many of her favorite people, and play, play, play. I think it has been so good for her.
Athan is tolerating his oxygen fairly well. We use some medical tape to keep it from shifting around too much, and to keep him from pulling it out every few minutes. I think the tape bugs him a little, but it also seems to keep his oxygen tube still enough that he forgets about it. I'll write more detail later about the whys and whatnots of his cardio stuff.
I have really enjoyed seeing so many faces - some I haven't seen in a year! It's good to be here.
Ryan is off to India. He left here last night, stayed with friends in Amarillo, and flew out this morning. He'll be gone until the 15th. Man, are we gonna miss him around here! Still, we are excited for him to get to go.
Ok, Athan needs me! :) More when I get a sec...
Christmas, scaled-down though it was, still came with a little craziness. We had to work at the logistics of getting Ryan and Morgan to family things on time while Athan and I kept his eating/sleeping/meds schedule on track. I think we did fairly well - he only had one really fussy night. And Morgan... well, I just wish you could have seen her this year! She is old enough to open her own gifts and get excited about all of them. She got to spend time with so many of her favorite people, and play, play, play. I think it has been so good for her.
Athan is tolerating his oxygen fairly well. We use some medical tape to keep it from shifting around too much, and to keep him from pulling it out every few minutes. I think the tape bugs him a little, but it also seems to keep his oxygen tube still enough that he forgets about it. I'll write more detail later about the whys and whatnots of his cardio stuff.
I have really enjoyed seeing so many faces - some I haven't seen in a year! It's good to be here.
Ryan is off to India. He left here last night, stayed with friends in Amarillo, and flew out this morning. He'll be gone until the 15th. Man, are we gonna miss him around here! Still, we are excited for him to get to go.
Ok, Athan needs me! :) More when I get a sec...
Sunday, December 23, 2007
the trip
Papa Sid is our hero! He came to pick us up in the plane, so he turned a 20hr trip into a 6hr trip.
Both kids did very well. Athan tolerated his oxygen fairly well (except for the last 30 minutes), and Morgan tolerated her car seat fairly well (except, of course, for the last 30 minutes). Here's a couple in-flight photos (cardio has put Athan on oxygen until surgery, thus the tubes):
Both kids did very well. Athan tolerated his oxygen fairly well (except for the last 30 minutes), and Morgan tolerated her car seat fairly well (except, of course, for the last 30 minutes). Here's a couple in-flight photos (cardio has put Athan on oxygen until surgery, thus the tubes):
made it
We got everyone to Clovis and settled in. Just wanted to let everyone know. More details to follow as soon as I have a bit more time.
Wednesday, December 19, 2007
at long last - our Christmas plans
It has been a very long week. Our plans all semester long have included a trip to New Mexico for Christmas. When we saw cardiology last week, however, we found out that Athan's heart condition is more serious than we thought, and suddenly our plans were called into question. We have gone back and forth a thousand times between deciding to go home and stay here. We've shuffled through a myriad of factors, talked with doctors, prayed with friends and family, and changed our minds over and over again.
Finally, we have resettled on going home, but we have modified our plans to make the trip safer for our boy. We are doing a very scaled-down version of our trip home: We regrettably will not be making trips away from Clovis, and our appearances at big-group gatherings will be more brief than usual. Athan's cardiologist has put him on oxygen to prepare him for surgery, and we will be staying fairly stationary to make sure we can be consistent and keep him healthy.
We will be in Clovis by the end of the week, and will stay through the end of January. I will do my best to continue to update this blog throughout the trip.
Finally, we have resettled on going home, but we have modified our plans to make the trip safer for our boy. We are doing a very scaled-down version of our trip home: We regrettably will not be making trips away from Clovis, and our appearances at big-group gatherings will be more brief than usual. Athan's cardiologist has put him on oxygen to prepare him for surgery, and we will be staying fairly stationary to make sure we can be consistent and keep him healthy.
We will be in Clovis by the end of the week, and will stay through the end of January. I will do my best to continue to update this blog throughout the trip.
Sunday, December 16, 2007
10,000+
Some time in the past week or so, we passed ten thousand hits on this site. Ten thousand times you have thought about us, checked on us, and many, many of you have prayed each time you've read.
We remain grateful beyond words.
We remain grateful beyond words.
Saturday, December 15, 2007
Thursday, December 13, 2007
another appointment report
Long day yesterday. We were in Lex from 9 to 4 for Athan's appointments. We saw endocrinology, cardiology, and the NICU Grad Clinic.
Endo - We'll hear from her soon about the lab results (which tell us whether we need to tweak his dosages or not). Otherwise, all is well.
Cardio - We repeated his ECHO and EKG, which Dr. K says have almost no change. He did say that the presure in his right ventricle is higher than he would like, so we'll probably be moving the surgery up a little. We thought his heart surgery would be near his first birthday, but now it will probably be February some time. Dr. K will discuss Athan with the surgeon on Monday, and we will hopefully hear more specifics then.
NICU Clinic - This was just a general follow-up. The did developmental assesments, we spoke with a dietician, and saw a pediatrician (Dr. Desai, who is wonderful!). No surprises, really: He looks good. He's still behind on some developmental milestones, but he's catching up. Same with weight gain.
Laurie will be here any minute for our last PT session before the C-mas break.
Endo - We'll hear from her soon about the lab results (which tell us whether we need to tweak his dosages or not). Otherwise, all is well.
Cardio - We repeated his ECHO and EKG, which Dr. K says have almost no change. He did say that the presure in his right ventricle is higher than he would like, so we'll probably be moving the surgery up a little. We thought his heart surgery would be near his first birthday, but now it will probably be February some time. Dr. K will discuss Athan with the surgeon on Monday, and we will hopefully hear more specifics then.
NICU Clinic - This was just a general follow-up. The did developmental assesments, we spoke with a dietician, and saw a pediatrician (Dr. Desai, who is wonderful!). No surprises, really: He looks good. He's still behind on some developmental milestones, but he's catching up. Same with weight gain.
Laurie will be here any minute for our last PT session before the C-mas break.
Saturday, December 8, 2007
new skills
Athan is doing SO many new fun things! He can roll over from his tummy to his back, hold and shake a rattle (in both hands), and push a button on one of his toys to make the music play. Just yesterday, when Laurie was here for PT, he began to imitate her shaking her head back and forth. She would shake her head at him, and he would wait and study, then shake his head back at her. He caught on very quickly, and now he seems to think this is a great way to "talk" to anyone who wants to play the game.
He is also:
making "raspberries,
flirting with Lucy,
reading (per sister's recommendation),
and stealing Mom's books so she will stop reading!
He is also:
making "raspberries,
flirting with Lucy,
reading (per sister's recommendation),
and stealing Mom's books so she will stop reading!
Wednesday, December 5, 2007
Celebrate! :)
We had a round of follow-ups at UK today.
Opthalmology: His left eye is turning in a bit, so we have to patch his right eye for an hour a day.
Genetics: Same - nothing conclusive, tests pending.
Neurology: Here's the good news!! We get to wean him off of his phenobarbitol (which will take about 4 weeks), and if that process goes smoothly, we never have to see neuro again! :) Woo-hoo! :)
Opthalmology: His left eye is turning in a bit, so we have to patch his right eye for an hour a day.
Genetics: Same - nothing conclusive, tests pending.
Neurology: Here's the good news!! We get to wean him off of his phenobarbitol (which will take about 4 weeks), and if that process goes smoothly, we never have to see neuro again! :) Woo-hoo! :)
Tuesday, December 4, 2007
our kids
Athan is doing really well. We have some more follow-up appointments at UK tomorrow - neurology, opthalmology, and genetics. We'll be in Lex most of the day, but I'll try to get an update posted tomorrow evening or Thursday morning.
Laurie has scheduled the last few PT appointments with Athan before we head to New Mexico for Christmas. I'm a little sad we won't get to see her so often - for Athan's sake and mine! We'll work hard on his exercises while we're home, and start back up again with therapy as soon as we hit Wilmore in January.
Morgan seems to be a little more content lately. We've tweaked a few things with her routine, and changed a few bad habits we had all gotten into, so toddler-life is a bit more level these days.
I'll let you know how the appointments go asap.
Laurie has scheduled the last few PT appointments with Athan before we head to New Mexico for Christmas. I'm a little sad we won't get to see her so often - for Athan's sake and mine! We'll work hard on his exercises while we're home, and start back up again with therapy as soon as we hit Wilmore in January.
Morgan seems to be a little more content lately. We've tweaked a few things with her routine, and changed a few bad habits we had all gotten into, so toddler-life is a bit more level these days.
I'll let you know how the appointments go asap.
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