Thumbs Up

The answers to Riley's Sweat Test had been playing on our mind last weekend. Even though we didn't believe she would come back with a bad result, it's still nice to hear the doctor actually say it. Originally we expected that the result wouldn't come back for a few days; but after they did it they clarified that it would be available by 6pm that night. It was a relief. However we did the math very quickly and realized that all the doctors who were authorized to deliver the results to us would be finished (and probably driving as far away from the hospital as they can get) by 5:30pm. Just knowing that the answers would be sitting on a computer waiting to be read with nobody able to let us know would have driven me crazy. So after we took Riley out on yet another day pass, we made sure we returned her to the hospital by 5pm in the hopes that maybe just maybe the results got back in early. When we entered the cardiac ward we almost immediately ran into one of the doctors who greeted us with a smile and a thumbs up. Negative. Riley's sweat test came back and it was negative for Cystic Fibrosis.

Other than that fantastic bit of news, we have been barely spending any time at the hospital at all (at least during the day); as soon as they let us know we could start taking Riley out for the day we have been doing it every chance we can get. I mean wouldn't you? Everyone in the hospital is so amazing and helpful but there is just something so good about being able to come home with your kid. We have been told that they are still working very hard on getting everything in place for us to look after her before her next surgery and even though the idea of that is fantastic; it's just nice to be able to take her home for the day in the meantime. Though I think Jess is anxious for that to happen soon. She has been spending most nights at the hospital with Riley which can be difficult. I tried it for one night and had a horrible night's sleep. All the parents reading this would instantly think I am referring to what would be the typical baby sleep experience where they are restless or difficult at some ridiculous hour. That's not the case with Riley, she sleeps really well (most nights); the problem is that you are trying to go to sleep to the sound of nurses, machines beeping/buzzing and of course other babies crying. But Jess assures me that you start to get used to it plus she can do wonders on little sleep. For her sake though I hope it happens sometime soon.

As for Riley; she just continues to shine. She is impressing everyone who she encounters whether they are a doctor, an occupational therapist, a speech pathologist and the list goes on. I always ramble at length about how well she is doing (I could boast about her for days) but this has lead to some people asking me "Well if she is doing so great then does that mean she won't need the next surgery?". I get asked that quite a lot and the answer is no, unfortunately. There is a small window of time between surgeries when the baby will be doing well and then they will start to deteriorate and need it again. Same goes for when it comes time for her third surgery in a few years time. No matter how well she is doing, she will outgrow the stent in her heart and it will need repair. But it's nice to know that she is kicking goals in this short window between surgeries plus she looks darn cute doing it.