Friday, July 29, 2011

Star Wars Cookies & Heart Cupcakes

Taipan choose another recipe from his Star Wars cookbook for us to try. As it turned out, my mom had given us some Star Wars cookie cutters, so we put them to use.
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Taisim also wanted to make chocolate cupcakes in our heart-shapped muffin pan, so we did that too (the after wasn't so pretty - I put too much batter in, and the cupcakes overflowed and lost their heart shapes for the most part):

Tuesday, July 26, 2011


We've been swimming quite a bit the past couple of weeks, both in our neighborhood pool and a friend's backyard above ground pool. Both are a lot of fun. I like the neighborhood one because it's warmer and both kids can touch, but while our friend's pool can be quite chilly, it's nice to have a pool to ourselves and to swim with friends.

I'll edit with pics from the iphones later, but this is what I have for now:

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Saturday, July 23, 2011

Tea & Bead Shop

I wanted to do something special with my mom during her last weekend in Ohio before she drove back to Orlando for a few months, so we went to lunch at Miss Molly's Tea Room, a place that Simi and I really enjoy.
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After lunch we walked down down the block to The Potomac Bead Company. The three of us made bracelets, and Simi also made a necklace.
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Thursday, July 21, 2011

Taiko bouncing back

These pics were taken with the first week or so after Taiko was released from the hospital.

I don't know if it has anything to do with the surgery or not, but within a few days of our getting home he started wanting to sample a lot of new foods. He's mostly interested in ones that he can hold and feed to himself. And he's not so interested in swallowing anything yet, but he clearly enjoys biting and chewing and trying out new tastes.

At our neighborhood playground:
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In our house, playing on the floor and eating a pretzel:
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Chewing on a red pepper:

Wednesday, July 20, 2011

Post-op update

I waiting too long to finish my posts with the details on Taiko's hospital stay - it's all a blur now and I can't quite remember the exact timing of some of the things after Sunday. So, I'll have to summarize.

On the Tuesday following the surgery his second chest tube was removed. I think this was also when the pacer wires were removed, but that could have happened on Monday. Same thing for the femeral artery line - I think it came out on Monday, but am not 100% sure.

On Tuesday evening we were moved from the PICU to a regular recovery room. The only thing Taiko had at this point was an IV in his left leg, but it was "just in case". He was transitioned to oral medications - Lasix as a diuretic and regular ol' children's Tylenol for pain. He also had a pulse-ox monitor on his toe (very non-invasive) and leads taped on his chest, and we had a portable box that measured his heart rate (also non-invasive).

We only spent one night here! Our cardiologist stopped by around 10am on Wednesday morning and said we could be discharged. Woo hoo. Less than a week after the surgery and we could go home - it was a nice surprise. We were hoping to be discharged on Thursday, but were prepared in case they wanted us to stay until Friday. Taiko just had to get an echo done, and at 3:45pm we were on our way out of the hospital.

Coming home was nice - I missed Taisim and Taipan terribly. Taiko was happy to see them too. The first few days at home he was a little uncomfortable and clingy, and I was worried that he wasn't peeing enough. But by Saturday he seemed to turn a corner - more energy, more eating, and more pee.

We had a follow up appointment with the surgical team yesterday, and they removed his last bandages and the one suture that was not dis-solvable, and they said he's doing great. We have a follow up with the cardiologist next Friday, and he'll get another echo and then hopefully we're set for a while.

Tomorrow will be two weeks since the surgery and he is nearly 100%.

While he was in the hospital he cut his second tooth (also on the bottom). His sleeping pattern is different than it used to be - my guess it was due to change anyway. Now that I'm back to work we'll see if he falls back into our old pattern, or sticks with his new one.

The last thing I want to say is a big thank you to all of our friends and family that helped us over the past two weeks. My mom, Yuta's parents, my sister, Kathy, John, Erin, Hannah, Jeff, Chi Chi, Kimberly, Allie all helped with Taipan and Taisim and/or came to visit at the hospital and/or brought food. And then a whole host of folks that were providing support via email, video chats, facebook and texts. Not to mention the folks at my work and Yuta's that covered for us and went easy on us both leading up to and during the time of the surgery. We couldn't have done this without everyone's support.

I can't even begin to explain how light and relieved I feel now that we're past the surgery. Looking back on it I feel like it was just a blip - one that seemed insurmountable a month ago, but gets smaller every day.

Monday, July 11, 2011

Update on Taiko

Today is day #4 post-surgery, and Taiko is progressing pretty well. We had a little bit of a blood pressure scare the day after surgery, but that got sorted out by that evening, and once he went on a pacer and got a blood transfusion he stabilized.

I'm going to recap a bit of detail here to help me remember what's happened.

Surgery, Thursday, 07/07/2011:
Taiko went in the OR at 7:15am. There was a wonderful nurse practitioner who met us every hour or so to give us an update. By 12:30 or so the surgery was complete without any complications and we met with the surgeon (Dr. Kouretas). He was then moved to a PICU room and we got to see him around 2pm (it took a while to get him moved and have all of his tubes and monitors hooked up). When we first saw him he had a breathing tube hooked up to a ventilator, a band around his head to measure oxygen (I think), two chest tubes, an Arterial line in his right arm, a catheter, pacing wires (not hooked up to anything), an IV in his left ankle, an IV in his left arm, and an IJ line in his neck. He was still very sedated from the anesthesia, but was also on morphine and versed. For his heart he was on dopamine and milrinone.

Before the end of the day he had a tube inserted through his nose to his stomach in order to help keep it empty. Thursday night things seemed to be going as expected.

Day #1 post-op, Friday, 07/08/2011
Early morning Friday his blood pressure (taken from the arterial line in his left arm) dropped very low, and his heart was also showing an irregular beat. The irregular heart beat is not uncommon after all after heart surgery. The low blood pressure was worrisome. To better gauge his pressure they put a cuff on him to measure blood pressure. The cuff reading was much much higher than the art line pressure. This was confusing, but because the cuff reading was so strong, they took a wait and see approach on his blood pressure, and for the irregular heart rhythm they put him on a pacer (which is an external pace maker) that would dictate the rhythm and pace of his heart beats.

There was talk of maybe removing his breathing tube, but mid-morning they decided not to. They wanted to make sure they had the blood pressure situation figured out and stabilized. During this mid-morning period Taiko was coming in and out of sedation and was a wiggle worm - we had to help restrain him so that his tubes remained in place. By noon he was sedated again, and the plan was to re-wire his arterial line to see if maybe a kink there was causing the low blood pressure reading. They re-wired it, and it was still giving a low reading, so the next plan was to put a line in his femoral artery in his leg. We had to leave the room while they did that, and less than an hour later they were done, and when we got back to the room we could see that the femoral artery bp was showing low. So now we had three different readings - one from the art line in his arm, one from the fem line in his leg, and one from the cuff - and they were all very different. The art & fem lines were low, but not as low as it had been in the early morning. The major result of the low blood pressure was that his urine output was way down.

The plan was to give him a blood transfusion, and check this adrenal gland & thyroid function in the event that something was off and contributing. As soon as the transfusion was going his blood pressure rose, and it didn't drop at all after that and his urine output picked up, so problem solved! It turns out that his thyroid function was fine, though the adrenal might have been a little low.

Day #2 post-op, Saturday, 07/09/2011
Overnight was great, so he was extubated. He was instead given a cannula which was attached to oxygen in the wall so that they could regulate the amount of oxygen and the rate of the flow.

I got to hold Taiko for a little bit after his breathing tube was removed. He was squirmy and kept trying to get the the cannula out of his nose and was having a hard time settling. We thought that it might help him if I held him for a bit, but it didn't seem to have too much of an effect, and it was very hard to keep his feet out of the tubes and wires, so we put him back in the bed after 40 mins or so. It was so great to hold him again, even though it was brief.

Day #3 post-op, Sunday, 07/10/2011
This day started out great - Taiko seemed like a different person.
His eyes were open and he was focusing and tracking people when they walked by. He even gave a couple of little smiles. And while I hate to hear him cry, he even did that around 3:30am. The amount of painkillers he had were down too - overnight and in the morning he was much more calme without medication than he had been the previous two days.

Lots of good stuff happened:
  • his external pacemaker was disconnected, and an EKG confirmed that his heart was in sinus rhythm
  • his catheter was removed
  • he came off of the high flow oxygen and put him on regular oxygen
  • they will take him off high flow oxygen and put him on the regular oxygen
  • the left chest tube was ready to come out, but that was postponed in the hopes that both chest tubes could be removed at the same time the following day
  • he started nursing again, though that didn't happen right away
I first tried to nurse him in the morning, and he wasn't very interested - he was still on the high flow oxygen, and had the chest tubes in, and I think it was hard for us to get comfortable, and for him to figure it out with the oxygen flow. Around mid-morning he got a feeding tube inserted through his nose and he got breast milk through the tube. This was an awful process because it kept getting coiled up in his throat. He had two x-rays to make sure it went to his stomach. Watching him through this, and the in and out with the breathing tube really put me over the edge -and it took a while for Taiko to settle after this too. He was more alert than he had been, and it was obvious when he was in discomfort. He got medication to help, but was very sensitive to noises, and the slightest sound would disturb him.

By 10pm he was trying to reach for me to pick him up, so I got settled in a chair and the nurses helped him get settled in my lap, and he wanted to nurse, so we did! Taiko did not want to stop - it was almost all comfort nursing, though I think he was drinking a bit too. I asked the nurses if I could get a bigger bed so I could lay down with him, which they did. By midnight we were both in bed, trying to get some sleep! Slowly getting back to normal.

Day #4 post-op, Monday 07/11/2011
His left chest tube came out today, and Taiko was taken off oxygen, and his feeding tube was removed since he was nursing again. He started to be weaned off of the milrinone and the dopamine. By the end of the day he was off dopamine, and the next morning he was off the milrinone.

Wednesday, July 6, 2011

Fourth of July

We had some friends over to celebrate the 4th this year - about 20 people were here (and some close friends were not able to come due to being sick, and they were missed dearly); there was some Rock Band, a little bit of Bananagrams, some video games, and a lot of running around outside and playing in the basement.
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About an hour or two before dusk Muriel, Storm and Taipan helped me bring out the sparklers, smoke bombs and other goodies:

And right around dusk we decided to get things started. Yuta was again our master of ceremonies. We did a lot of smoke makers first, then some noise makers, and then sparklers:
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When it got dark it was time to get down to business. My mom picked up some fireworks on her drive from Florida to Ohio. We had three boxes of them, and I wasn't quite sure what to expect, and they were pretty awesome. I took some video, but I don't have any pictures to share. They were louder than I expected, so I was a little nervous that one of our neighbors might not be too happy with us, but the only neighbors we saw were ones that wanted to come over and see them.

I do have pictures of the kids laying down while waiting to watch them:
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And my main squeeze, in between lighting the fireworks: