After Jonah's dressing changes, Gerry and I went back there to see him. All of a sudden milk started coming out his nose and mouth, and he began choking. We called for help but all of the nurses were busy at the time. I had to yank Jonah up and lean him forward to keep him from choking, and finally someone came to suction his nose and mouth. He had pulled his tube out again, up into his throat, and it was choking him.
I told them not to put the tube back in unless they could figure out a way to secure it. How can I go home and sleep if I know the same thing could happen again?
Later on tonight, they will be putting in another PICC line - this time in his neck. They will suture in to try to secure it better. As you can imagine, this is very hard on me - thinking of Jonah having to be sedated, messed with (yet again), and then having a PICC line in his neck. With how strong he is and how much he thrashes around, I'm just so afraid that he will rip it out too, stitches and all. I HATE the idea of having something in his neck like that. It makes me feel literally sick to my stomach. I'm just waiting on a call from Matt to talk to him about it, so we can make the final decision. I had asked them to wait to see if he would eat at his 8pm and 11pm feedings, but at eight, he only ate 21 cc's. He needs the PICC line for added nutrition (back to the Hyporal), pain meds, and antibiotics (should he need them again). Along with it, though, comes a higher risk of infection. I know it's necessary until they can find a solution for the eating and pain issues, but I just hate the idea of it, plain and simple.
Another reason for the PICC is that right now they are giving him things through his umbilical line (pain meds, antibiotics, sugar water), and with that, there is a big risk that he could get blood clots in his toes. With the PICC, they would just be able to use the umbilical line for blood draws and to monitor his blood pressure and heart rate.
Please be in prayer for Jonah tonight as he gets his PICC line. Terrified is what I feel more than anything, and I'm just so tired. It's so hard to make these decisions when everything seems to have so many risks.
I need to learn to be his advocate without feeling like I have to be in control - that it's all on my shoulders.
Please pray that all of Jonah's issues will begin to resolve, starting with nutrition. He can't get better (or even close to going home) without eating. If we could get him eating, he would be able to get rid of a lot of the lines, and they wouldn't have to put the feeding tube back in(which will probably be put back in tomorrow if things continue as they are).
Thank you for praying for Jonah. He is one brave, strong little boy. His mommy, on the other hand, is feeling very helpless and weak.