Tuesday morning dawned very early, after a late night packing for our vacation to Denver. Because of the sedation that would be used for his echocardiogram, Daniel was not allowed to eat past 5:30 a.m. The alarm rang at 4:30 a.m. and I dragged my sleepy body out of bed to warm a bottle. After filling the bottle and placing it in the hot water to warm, I crawled back into bed, in hopes of catching a few more minutes of sleep. No dice. My mind was already hard at work, going over lists and re-playing the packing of our bags. Recreating mental lists of the last few things to do before leaving the house for the week.
It was no small miracle that we pulled away on time. Getting 5 kids ready to go – especially when it’s so early in the morning – is no small feat. We’ve managed to make it almost a science. Daniel, with his sweet smile and bright eyes, had no idea what he was in for and slept peacefully during the entire 90-minute drive to the hospital. The rest of our brood happily enjoyed the first leg of our long day, because they knew what the ultimate destination would bring.
As we arrived at the hospital, Daniel and I headed into the appointment, while Jared and the kids parked the car. They would be meeting a representative from Child Life to learn a little bit about what Daniel would be experiencing with his upcoming surgery. Then they would have some time to spend at Toys*R*Us and at Grandma Larsen’s house.
The first item on the schedule for Daniel was a chest x-ray. We waited, trying to be patient, for about 30 minutes before it was go time. Finally we were called back to the x-ray room, and the pictures we taken in a matter of 5 minutes. Easy peasy. A one-person job. I stood and watched, smiling to see my little guy squirming and giving the technician a run for her money. Compare that to our experiences at the hospital at home. It was a 3-person job (me being one of those people), and a tough one at that, to get the pictures they needed. I don’t think they do too many chest x-rays on tiny little babies at our hospital. Experience counts.
We then checked back in at the Cardiology Clinic, where we sat and waited some more. Waiting rooms are really not the ideal place for a worried mom. As we waited – trying to be patient some more – my mind conjured up images of the germs and who-knows-what-else were creeping and crawling all over everything and everyone. I wanted to close us up in a little plastic bubble where we were safe from all the germs my mind knew were everywhere.
Again it was our turn, and we were escorted to a small examining room where all the stickers and wires were placed on Daniel for an EKG. This is the part that has previously been the hardest to see. It is a quick procedure, but there are so many stickers – 13, I think - that have to be pulled off. I don’t know how they even get them all in place on such a tiny little guy. It’s a good thing he doesn’t know what’s going on!
The wires were attached, the reading taken and printed, and it was all over.
Not a single tear was shed. And that was no small miracle! By now, the nurse practitioner was in the room, introducing herself and explaining what would be happening next. We were taken into the ultrasound room and things started moving. After a brief history, an IV was placed – on the first try, thankfully – and the NP began to administer the medications that would keep Daniel asleep and comfortable for the procedure. Normally, they give a cocktail of 3 different medications. Daniel was pretty sensitive to the drugs (just like his mom), so only 2 were given (Versed, which is like Valium, and another one to keep him from wiggling so much). Daniel was also placed on oxygen because his oxygen saturation levels didn’t want to stay above 90%. I was told this is a common occurrence when there is a major heart defect, and also when the patient has Down syndrome. The echo took around 90 minutes, and by the time it was over, Daniel was already squirming and fussing. I was finally able to hold him again and he immediately settled back into a restful sleep.
At this point, we were taken upstairs to the same-day surgery area where Daniel had to recover. Because of the sedation, we had to ensure that he could eat and was OK before we could leave. I fed him and we snuggled for about an hour, and we were given the OK to leave.
If only it was time to be on our way! We still had to go back downstairs to the Cardiology Clinic to meet with the doctor and go over the results. Again we were asked to have a seat in the waiting area, where we waited and waited and waited…for 45 minutes!! We were finally brought back to a room, and I was surprised to see the nurse dragging in the EKG machine. She told me that she didn’t have Daniel’s name in the computer when she did the original EKG, so his printout had someone else’s name on it. Wow. How’s that for accuracy! I’m glad she caught the error, but I don’t understand why she couldn’t just write his name on the paper. So once again, those vicious stickers were placed all over Daniel’s chest, the wires attached, the reading taken and the results printed, this time with the correct information at the top. And then I was given the opportunity to be the beast who removed those evil little stickers. No thank you, ma’am! You can be the bad guy, and I’ll be the rescuer who makes everything all better (or so I like to think).
The doctor came in and reviewed the results of the day with me. The echo showed pretty much what they had seen previously – a very large hole between the atria (the top two chambers), and a small hole between the ventricles (the bottom two chambers). The valve seems to be functioning pretty well, so the hope is that there won’t be much leakage after creating the two valves. While the chambers of the heart are balanced, the heart muscle itself is enlarged and there is “fluffiness” in the lungs. Daniel’s weight gain is still puttering along, but thankfully going in the right direction. He was 10.6 pounds (about 50th percentile on the Down syndrome growth charts…not bad), and that’s without the fortifying we were supposed to do. (Daniel doesn’t seem to tolerate formula, even in small amounts. He just throws it all up. Kinda’ counterproductive, so we gave that up.) The doctor thought about increasing the Lasix dose, but then decided against that after I told him about Daniel’s on-and-off diarrhea since we re-started the medication last month. The last thing we need at this point is dehydration! The doctor submitted a request for surgery, so now we wait for a call from the surgery department to let us know an exact date. Wait. Wait. Wait some more. (I think I need to learn a little patience!) Best guess is 4-6 weeks.
The most important thing now is to keep a certain someone HEALTHY. So we may become hermits for the next little while. Good thing we took our vacation when we did!
In the meantime, Daniel is smiling and learning how to roll. He has started to take quite an interest in toys and other objects, and seems to be trying to grab them sometimes. He sleeps through the night, and still a lot of the day, but he is having some longer stretches of awake time occasionally. His head is still floppy (he seems to have lost some strength with the illness he had a few weeks ago), but getting stronger and more controlled every day. He is just completely delightful and I am thankful for every minute I have to smell his milky breath and snuggle his squishy little body.
Stay tuned for a re-cap of our vacation to Denver…(I’m typing this as we drive through the nothingness that is Wyoming)
