Creeping Up

Getting clear answers from Doctors is like herding cats. This is a little bit advice from the journey to anyone who is about to embark on something similar to us. You just have to learn to be patient and of course PERSISTENT. Over the past few weeks we have tried as hard as we can to get some definitive answers to questions we had but would constantly get told that some other doctor has the answers or they would need to follow it up. It kind of felt like we were stuck in Groundhog Day because every morning at the Hospital we would ask three questions:
- “Since we have a day pass to take Riley out of the Hospital; could we get a Night Pass?”

- “Have you locked in a date for Riley’s Cardiac Catheter Procedure?”
- “Has there been any movement in regards to us looking after Riley full-time before her next surgery?”
Sometimes you just feel like you are the most annoying people in the world to keep asking everyday but honestly who cares? Being annoying gets stuff done! Jess was basically teaching a masterclass in persistence and nagging to get the answers she needed from all the doctors. She said she perfected her nagging techniques on me over the years (her words, not mine!).

The first answer came when Jess kept asking the question of “Why can’t we take Riley out overnight?” considering the fact that up until that point we had been taking her out every day for as long as we could. Problem was that there was no such thing as a night pass. Minor details to my wife though. It even became a running joke among the doctors. They would prod Jess to ask the next doctor if she could get an overnight pass; knowing she would just get the same answer. We all joked about it together but little did they know that in the end, we would get the last laugh.  She got in the ear of the right doctor who also thought “Well why can’t they?”. This lead to him asking the other doctors and very soon we had our overnight pass. This just made life that much easier for Jess; she had been spending nearly every night at the Hospital sleeping next to Riley and as you can imagine, it was far from comfortable. So now we take Riley home with us every night and return her to the hospital in the morning. Jess teased me quite a lot that I should prepare myself because now we will have Riley crying in the middle of the night waking us all up. But you know what? It actually doesn’t bother me one bit. I love having Riley here with us even if she likes to grunt and groan in her sleep very loudly at 4am. The only flipside to this little perk is that you can’t have both an overnight AND a day pass. So we need to have her in the hospital every morning and afternoon but we do take her for “extended” lunches in between.

The second answer we were seeking was a little more important. We needed to know when they would book Riley in for a Cardiac Catheter Procedure. She has had one of these before under very different circumstances but this time it is used as a pre-cursor to her big second surgery. Basically after she has this, she will have her surgery within 1-2 weeks. We had expected that our doctors would lock it in for the beginning of May; just before she turns four months old. But getting them to share that little bit of information with us was quite difficult. We would keep asking if they had pencilled in a date and they would always reply “Oh yeah we need to get onto that”. Finally after much persistence we got our answer; April 15^th. We were actually taken aback by this date because it is only two weeks away, far sooner than we were expecting. This also means Riley could be heading into surgery within the next 3-4 weeks. After they do the Cardiac Catheter Procedure, they will tell us the exact date. To be honest, I am not that thrilled with it being so soon. I am enjoying getting to see my little girl grow and do new things. Not so excited about going through that dreaded moment when you say goodbye and then see the doctors wheel away Riley for surgery (no matter how much we love her Cardiac Surgeon; he is awesome!). But that is the nature of the situation we are in and you just got to tackle everything that is thrown at you. 

As for the third answer we are seeking about whether we are still going to look after Riley full-time before that surgery…. Well now that Riley’s surgery date has crept up significantly it looks like it probably won’t happen. We discussed with one of the people organizing that and there is still so much to be done for it that it just seems like we have run out of time. Still possible, just not likely. We still get to take her out overnight to our accommodation so can’t really complain. 

We have had a nice little reprieve for the past couple of months from the stress of the realities of Riley’s heart condition but all good things must come to an end. We will be thrown headfirst back into the chaos of surgery and recovery. But you know what? There is no-one I would rather do this with than my wife Jess. She is loving, brave, strong and honestly an incredible mother. Plus she doesn’t take no for an answer. She managed to convince some doctors to create an overnight pass out of thin air! Who does that??

Riley honestly doesn’t know how good she has got it to have a mother like her...