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. :)

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:

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?":

Ryan and Morgan made it home. It has been so fun to listen to Morgan's telling of the trip! :)

Athan and I have been trying to catch up on sleep we missed over the weekend.

That's 'bout it for now. :)

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!

more meds

Dr. Coburn prescribed another round of antibiotics, and some Robitussin. He is asleep, finally. Poor guy.

I should sleep, too! :)

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.

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!

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.

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! :)

Rolling Milestones!

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.