an evening with friends

Athan had lots of company tonight. Our sweet friends Lance, Laurie, and Jordan brought us dinner. We ate together and had a fun time of celebrating Athan's recovery together. And as many of you already know, I just love food that other people cook! :) Athan and Jordan had a good time hanging out after dinner.

Then we went next door for some more food and fellowship with the Herons. Athan spent lots of time studying Margot's toy animals and trying to turn the page of a picture album. He was in a pretty good mood all night long.

He's finally asleep, so I better get a few things done while there's no baby in my arms. :)

still doing well

A little fussy. A little clingy. But still smiley and clapping and playing with Dad, too.

And we just changed the SIXTH dirty diaper since we got home yesterday. Yep. 6. For a kid who usually poops once every 2 or 3 days, this is a record. :-)

home!

We're home. It is so good to be in familiar surroundings again. Ryan is rocking Athan to sleep at the moment, and it's good to know he can sleep (in his own bed) for as long as he wants to. No need to wake up for an x-ray or to take his vitals.

The best part is having our boy back. Last night he was pretty fussy for a couple of hours - just uncomfortable and unable to sleep. After he finally crashed and slept for a couple of hours, he woke up in every sense possible. The lethargy seemed gone suddenly - he was smiling and laughing and clapping like Athan does. Just so good to see him again.

We'll see the surgeon in a week or two, and then his regular cardiologist in a month. For now, he's home on his regular endo meds (cortef, synthriod, and genotropin), on Tylenol for pain, and on 1 daily does of furosemide for his heart. The tylenol will stop within a few days, and we may get to stop the heart med after we see cardio, too.

We'll keep updating, and thank you all, again, for carrying us through another trauma with our boy. We couldn't do this without you.

it's official...almost

We're going home. Dr. K came by and decided everything was a go. Once Dr. Irene gives us the go ahead on the endocrine side of things we're out the door. It seems almost trite to thank you all at the end of every post, but we remain genuinely grateful for your prayers-constantly. What would we have without mercy?

Here's a pic of Athan trying to speed up the IV removal process this morning!

a smooth night

Athan slept really well last night. He is very mellow, and doesn't seem to be in much pain. His only complaint is that I have to stop his feedings short because we're still watching his fluid intake (that makes him pretty mad!). I think that will stop soon, though, and we should be free to feed as much as he wants. He is eating his baby food really well, and has been very happy to eat/play with his puffs again.

He has already had labs drawn this morning, which showed his potassium is low (common side effect of one of his medications). They also repeated the chest x-ray again, and we should hear about those results on rounds this morning. I think they will also give the official order to stop his IV steroids and return to taking it like he does/will at home.

Ryan and I both managed to rest fairly well when Athan was asleep, even though we had to curl up on each end of the one cot in the room. :-)

Thanks to our wonderful Wilmore Family who visited us last night, brought us dinner, and loved on our boy. It was sososo good to see them and celebrate Athan's progress together.

pictures from days 3 & 4

Day 4
Day 3

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. :-)

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.

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.

so glad to hold our boy!

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.

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.

good vitals, some discomfort on night #1

On.
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.

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.

1st post op pics

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).

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.

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

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.

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).

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.

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 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.

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. :)