Life on the Ward

We’re on the ward!

So the question you may be asking is how did Riley go from being in the intensive care unit to suddenly on the ward without going to close observations first like I said would happen?

Well Riley has developed quite a reputation here. Not necessarily the best one but at least a beneficial one. Originally she wasn’t even supposed to leave intensive care for another day but pressure came to move her out because they had so many cases coming through. Usually the next step is to get sent to a mini ward that has four beds all in the one room and a nurses station in the middle. If you do well enough then you get put into a double room on the ward then you will graduate to a single room.

Problem is that word had gotten around about Riley’s anxiousness; whenever they tried to give her medicines she would cry and refuse; if they had to touch her for any reason she would freak out because she was worried they were going to do something that would hurt her. Wouldn’t you feel that way after major surgery if you were four years old? Literally one of her surgeons entered the room with his hands raised in the air to pre-emptively reassure Riley that he was just looking and was not going to do anything to her. This lead to the team here worrying that Riley might become too anxious in the close observations area if they moved her there so they decided to give her a single room all to herself so she could be in a calm and peaceful environment.

Since Jess and I were planning to take it in turns sleeping at the hospital with her; the prospect of a room that didn’t have to share with any other potentially noisy patients was a dream for all of us. Riley’s minor freak outs here or there turned out to be a blessing in disguise strangely enough. In our opinion she wasn’t that bad really (probably a case of Chinese whispers among the doctors more than anything else) but hey whatever gets us that sweet single room…

Today was a bigger day for Riley as she had a couple of Physio appointments where the goal is to get her to start walking which is really uncomfortable post surgery. The expectation was it would be a struggle to convince her and maybe we could eek out a step or two today and hope for more tomorrow. Thankfully Jess’ parents who have been amazing at looking after Maya for us through all of this by the way; went to Koorong and bought some new books for her. I ended up saying to her I will read one of them all the way down the other end of the ward (which is quite a trek) if she walks there. She barely needed any encouragement after that. Even though she was in a bit of pain; she motored her way down the other end. The physio’s were holding all the tubes and lines that are either attached to her or coming out of her and started to worry they wouldn’t be able to keep up. Then I used the same tactic to get her to walk back to her room. Worked like gangbusters. They were very impressed.

She didn’t love the experience. At all. But she loved the part where we read the books.

Also as you may have gathered already; she’s not a big fan of medicine; she has quite a few she has to take throughout the day and I feel like Jess and I have had to become good negotiators. We have had practice with the countless times our kids haven’t wanted to eat their dinner but at least we know what we are feeding them tastes good (regardless of what they may say!). This stuff is terrible and she knows it. We are starting to find our rhythm in this department to successfully  convince her do it despite her strong will. 

Overall Riley is improving; we still have a ways to go. She’s still in a bit of pain but pushing through. Also draining quite a bit of fluid from her chest (which is normal but that needs to decrease significantly before we can leave) and although her appetite has come back as well as her thirst; she still needs to be drinking and eating more than she is. One of the doctors mentioned that if she doesn’t pick it up in that area she may have to put in a feeding tube; we weren’t particular fans of that suggestion considering that she barely ate or drank anything yesterday then did a 180 today. The nurses agree. We're not concerned because we believe she will get there tomorrow. 

As for Jess and I; we are soldiering on and doing whatever we need to do to get Riley better. Jess is in her element in this environment. The nurses on handover to the next person who will look after Riley will make note of the fact that Jess is a nurse so you will have extra help. Thankfully they are not saying that in a way that makes Jess sound overbearing but actually quite useful. Like a little bonus prize to make a nurses shift a little easier. Jess didn’t even want to let them know that little fact just so they wouldn’t feel like they would be getting somebody butting in telling them they need to do things differently; but when you get asked “So what do you do?” consistently by everyone, it’s hard to keep it hidden.

I feel like I have written a novel tonight so probably should end it there but I do feel like I should keep documenting this just in case some other future fontan family discovers this blog and needs some reassurance about the journey they will walk on. But as well it’s nice to be able to tell everyone everything so we don’t have to repeat the same stories a lot. Thanks for being on the journey with us and thank you for continuing to pray!