Tuesday, December 30, 2008

What a Day (or how I spent my winter vacation)

Just wanted to share a bit of good news with those of you still reading.

Last month was one of Kian's regular heart monitoring visits. Although I had hoped differently, he wanted absolutely nothing to do with being in a dark room with a stranger for an echocardiogram. Not even the Backyardigans could stop him from howling the minute the technician entered the room. Such behavior is typical of a 19 month old. Still, I had hoped he would be miraculously calm just so we could avoid a trip to the hospital for a sedated echo.

So today was the big day. I was up at roughly 3:30 a.m. to be certain Kian nursed one last time before 4:00 a.m. I had a quiet morning to myself while I got ready. We took Angie to an early morning play date with a Karate friend (I am everlastingly grateful to her mom for volunteering to help us with Angie) by 6:00 a.m. and Chas, Kian and I were at the hospital by 6:30 a.m. to go to the Pediatric Sedation Unit.

The Nurse gave us a brisk run down of what to expect then rubbed some numbing creme on Kian's hand and foot. The sedation used on Kian today is the same type used in war zones to treat then move the soldiers--it is really fast acting and gets out of the system quickly too. The best part was that we would be with Kian the entire time and he would remain in the same room throughout all stages of the procedure. She left to retrieve some toys which kept Kian reasonably amused but barely distracted from the numbing creme, which he tried to reach by lifting the band aid every so often. A Child Life Specialist came in to give us more details about what to expect. The Anesthesiologist arrived and told us to be prepared for certain physical reactions. ome parents can be disturbed by how quickly the child drops off so the hospital did a nice job of making us comfortable by having everyone who entered the room give us information that built upon what the previous person said. I'm sharing here so that I don't forget, and to inform any other parent in a similar situation who might happen to wander here.

Basically, we were told that once the drug went through the IV, Kian would lose consciousness in a matter of seconds. The child may cry and the pitch of his cry changes just before he completely loses consciousness. The sedative may burn so they also add lidocaine, which may or may not relieve the burning sensation. The sedation process takes approximately 30 seconds and he would truly be awake one second then asleep the very next. We were warned to becareful because the child may collapse in one direction and many unprepared parents have been cracked in the face with the full force of their sedated child's face. The child's eyes may remain open and there would be rapid eye movement whether the eyes were open, partially open or closed because the child is asleep. The child may also have some involuntary movements for a time. The Anesthesiologist and a special anesthesiology nurse would monitor Kian's blood oxygen levels, pulse and blood pressure throughout sedation. A towel would go under his shoulders to ensure that he was receiving maximum air and he would have oxygen tubes. We were told that once the IV was turned off, Kian would regain consciousness in about 15 minutes. As probably every parent before me, I said I'd like a little of that sedative to take home. The Nurse quipped back, "It will cost you."

Once the numbing creme took effect, nurses arrived to insert the IV needle. As you can imagine, Kian was not pleased with this, especially when they taped his hand to a cloth covered foam board. He did try to karate chop it off after they left and he pawed at it quite a bit. I gently and repeatedly brushed my hands over his chest and belly and that seemed to keep him calm.

At 8:00 a.m. the echo tech arrived and the Anesthesiologist returned for action. I held Kian as they prepared the sedative and added it to his IV. He screamed in pain and my mind checked off that this was probably due to the burning sensation. Chas came up behind me and enfolded me and Kian in his arms while giving me back support. Within seconds, the pitch of Kian's cry changed, the nurse said, "There we go" and Kian slumped down completely with his next breath and stopped crying.

I laid him down on the bed, eyes partially opened, and the tech started the echo. My hands never left Kian--I touched his head, his hair his shoulder. I made soothing noises when he briefly fussed in his sleep--mostly for my own sake I think, since I'm sure he couldn't hear me. It suddenly hit me that something might be wrong, although we had expected that this echo would just confirm that there had been no changes since the valvuloplasty.

The cardiologist arrived to review the images captured thus far. He asked for some additional images, and the tech said, "you want that even though it's not stenotic?" I wracked my brain to remember what that word meant, but I had been awake for six hours on very little sleep so I was starting to feel a bit woozy myself.

The Doctor finally indicated that there has been no change since July of last year. He said there is some slight leakage, but nothing dangerous. The heart has not thickened (that would be the stenosis issue duh) any more and the aorta is not blocked--actually, the doctor said that his (the doctor's) aorta was probably more significantly blocked as a healthy adult than Kian's aorta. Kian's blockage was identified in the echo at a 7 and the Doctor said they don't worry until it gets around 40. Also, what they thought was a slight hole between chambers last year (which no one told us about at the time-grrrr) has appeared to close. We saw the valve directly and were told (for what we both believe to be the first time), that Kian has the outlines of three flaps, but two of them fused together creating the bi-cuspid aortic valve.

Really, as exhausting as it was, the procedure was confirmation that Kian is doing well at this time, though we still need to monitor, we may not need to do so as intensively as we have been doing. Yay Kian and yay us.

They took Kian off the sedation and he woke up immediately, although he needed my arms to support him for a while. And he willingly rested on the pillow while we changed his diaper (a big difference from the olympic wrestling matches of recent diaper changes).

Kian played with the pedialyte and didn't really drink it. The Nurse said it was okay to breastfeed anyway, however, Kian, refreshed from his deep nap, was more in an exploring frame of mind. He finally nursed for a few minutes and we alerted the nurses that we were successful. He walked out of his room on his own, then I carried him down to the toy bin. He did not want the pelican, the spider, the bears or the duck. When I mentioned the Koala, he pointed at it and smiled, so Kian took home a mini gray koala beanie baby.

We went to a local bakery and ate a small breakfast (by now it was 10:00 a.m.) Chas had a cinnamon croissant, I had an oatmeal and raisin scone and Kian had a toasted wheat bagel. We all shared but Kian seemed most fond of the bagel and my scone (Excellent taste the boy has--those were my favorites too). He sat on the wide window ledge, rather than the highchair I had grabbed. Other than the hospital tags on his ankle, casual observers would have not guessed that he had just been released from the hospital having been sedated only an hour before. He was cheerful and curious and had a healthy appetite.

We retrieved Angie from her playdate and arrived home. Chas and I had a brief doze this afternoon and that helped refresh us. Kian has been a bit more clingy than usual, and a bit more moody, but he is mostly himself tonight. Hopefully, he will be completely normal again tomorrow. Kian was quite a trooper today and I'm so proud of both he and Angie. Angie lost her tooth tonight--she was already in bed, but I think she was still wobbling it. She got up and her dad finished the job--out came a lovely little tooth. I think there is still enough time for the tooth fairy to come here tonight.

Getting up so early and having so many medical people working on Kian has given a surreal cast to the day. It's strange to acknowledge, that in some ways, this is our normal, though it isn't really normal at all.

I am deeply grateful to everyone who helped us today. We are tremendously blessed.

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At 12/31/2008 11:46 AM, Blogger Catherine said...

So glad all is well. Happy New Year!

If you ever need anything, I hope you know you can call us...though I also hope you never need to.


At 1/02/2009 12:43 PM, Blogger Bev said...

I am so glad that everything went well and Kian did well at his visit, heop you all had a wonderful christmas


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