Days 408 - 411 The Big Fright

It's been a pretty hectic week. When Mikayla was hospitalised on Saturday, she went in with temps over 40C, her heart rate was well over 180, and her O2 levels sitting around 70. She was very sick. They have had to constantly suction both her lungs and nasal passages to take out all the muck, and try keep it out of her lungs. Effectively she was diagnosed with bronchial pneumonia. Saturday was really horrible. It was really scary to see her so sick.

By Sunday morning there was a marked improvement though, and everyone was really happy with her response to the treatment she was receiving. She was obviously still weak, and unhappy, and still very sick, but certainly looked to getting better.

But then Monday arrived.

The first thing my husband noticed was the colour of her tongue. It was a very dark purple/ blue... almost black. Her jugular vein was more pronounced than normal. Her sats kept dropping, and her HR was high. They were concerned with her elevated HR because it was aggravating the fluid build up. She was also really very out of it. Every time I touched her (like trying to lift her), she would cry (a painful, sad cry). The pediatrician indicated that the tongue was a possible sign of possible cardiac failure, as was the enlarged jugular, and was very unhappy. Mikayla's upper right lobe of her right lung had also collapsed. The long and short of it, was that she felt Mikayla may not be able to fight this, and there was a chance we would have to start saying our goodbyes.

It was horrible. I think I went into mild shock, and perhaps panic too. I wasn't prepared for this day yet! It wasn't supposed to happen like this. I needed more time. I kept thinking: What if this is it? What if I don't ever see her smile again? I didn't take the time to really enjoy the last smile I DID see... to cherish it... to remember the moment! I needed that moment... and now it may be gone, and I may never get another chance! I just couldn't bear it! I mean, how do you EVER prepare yourself for that moment?

And then Tuesday arrived.

And suddenly she seemed MUCH better. Granted, the lung was still collapsed, and she was still on O2; but she started maintaining her sats around 90-100 and her HR was at normal levels around 130-140. Her colouring in her face was much better, and her tongue colour had marginally improved, and she was more alert and more comfortable. A complete 360! Today was much the same, and infact, she is even better. Granted, she is still on the O2, and her lung is still collapsed, and she is still fighting the pneumonia... but she looks like SHE is now fighting too, rather than just letting the drugs to the work. She had her hands in her mouth today, and was reaching out for her toys (the best part of this is that her left hand, which is the hand she tends to favour for reaching out, is "unusable" because it is bandaged up as that's where they have the port for the intravenous antibiotics and whatnot.. so she is using her RIGHT hand to reach out... her PT would be chuffed!). She is starting to look like our little Miks again. Not quite smiling yet- but is far more responsive, and clearly more comfortable.

It's been such a roller coaster week. We're not completely out the woods yet. Mikayla still has to be weened off the O2, and keep her levels up herself. Her tongue is also not quite it's normal colour. I'd like to up her feeds a bit- because she is currently on 50ml every 2 hours (not sustainable at home!) (she was on 125ml every 4 hours, with solids in between). And obviously the lung has to repair itself. But we have certainly turned the corner (and a big one at that!).

At the end of the day, this is Mikayla's story- and she obviously hasn't quite finished telling it. I am still convinced some days that people think I make these things up!

My little princess warrior.... you're certainly keeping things interesting!