As goes Outlast lyrics in the song Ms. Jackson ‘you can plan a pretty picnic but you can’t predict the weather.’ Yesterday, we met with the GI team and came up with a great plan in order to get Evan back on track with his feeds. Well, he woke up this morning and showed us who was boss and in charge… him! He woke up very early and was fussy. He wasn’t crying just fussing and I could tell he wasn’t feeling well. I asked the nurse if he could have some Tylenol and shortly after he fell asleep (we both did). A little while later, his nurse woke me up to say that he had spiked a fever and they would need to draw some labs and get some cultures. Fevers around here sound off major alarms. We are already in a single room so we didn’t have to move but he went on contact precautions which means that all medical staff that enters his room has to wear a mask, gloves and gowns. Evan noticed right away and was looking at everyone like ‘ what is going on? Why do you have those things on?’ They drew labs including a nose swab, urine sample, stool sample, sample off his PICC line and blood work. It takes 24 hours for the preliminary results to come back and then they watch the samples for several days to see if anything grows. Until then, he is on contact precautions which means we can’t take any trips down to the garden. His fever quickly broke without any more Tylenol and I think he has a GI bug that is presenting itself and the cause for the belly issues he has been having since this weekend. I asked for Poop and we had lots of it today and you could tell he was feeling much better. He had an x-ray that shows some pleural effusions (fluid in his lungs) so they switched him to IV Lasix for a day or so to pull that off. His white blood count was not elevated which is reassuring.
We had a visit from the feeding team and he took about 2 ounces of milk but ended up throwing up half of it at which point the decision was made to just give him bolus feeds the remainder of the day over two hours and he has tolerated them well. His fever broke early afternoon and he hasn’t needed anymore Tylenol and has been happy as a clam! We had a great evening which included dancing and singing! I did all of the dancing and singing and he cheered me on.
I woke up this morning a little grumpy from lack of sleep and had a headache and it didn’t help that they were doing construction on the floor beneath us and outside of our window the night before. I decided to take a walk and get a cup of coffee while they were drawing his labs and as I was walking I remembered this isn’t about me and if Evan could smile through it all so could I. Turns out we had a fabulous day! My headache went away and so did his fever. I posted the story the other day about the Bravest Soul and I know that Evan’s smile is reassurance that all is well. We know God is working so we smile!
He has figured out how to get out of his welcome sleeves (the blue thing on his arm that is supposed to keep him from pulling on his cannula) and his tickled when he finally gets it off!