This has been one of the most challenging and tense days we have had to date. I arrived at the hospital early this morning thinking that once I got there we would be talking to the Doctors and heading out the door. I walked in to the room and by looking at Jeff’s face, I could tell otherwise. The Doctors said that Owen’s blood results were showing low potassium so they had to give him more and test his blood again before we were allowed to leave. The new heart medication that he is on has side effects that are heightened when your potassium is low. So then we thought we would be leaving shortly after lunch.
Well, the results came back and it only went up slightly… so they had to give him more then test again. This is NOT what we wanted to hear since we had been dealing with a little boy who did NOT want to be in the hospital…. and was fighting everything. From taking medicine, to going the bathroom, you name it, he didn’t want to cooperate. To make things even more challenging, over the past week Owen has gone through some regression and has reverted back to baby talk. He doesn’t say much to us and a lot of the times when he does, we can’t understand him. Talking to the Oncologists, they say this is extremely common amongst the patients his age, and it will eventually go away. They don’t know how to deal with all of the trauma, so they regress back to earlier stages. It is just extremely frustrating and very taxing. Jeff and I are completely worn out today and exhausted with fighting with Owen.
Owen’s one Oncologist stopped by before we got the second results back and we were talking about how he was scheduled to go in tomorrow for another spinal tap. It was already close to 5 and we were scheduled to be in there around lunchtime tomorrow. She was saying that they just want to cancel tomorrow and hold off until next week. He has been through so much trauma over the past couple of days, and with his heart, they don’t want to put him under sedation so soon. They said that it shouldn’t effect his chemo treatment as he will just catch up. That was good news, as I can’t even imagine having to take him back there after what we went through today. This posed the other issue…. they were going to leave his port accessed so they wouldn’t have to do it tomorrow, but now they were going to have to take it off. This means taking off the bandages, which he absolutely hates.
He hates any sticker, band aid, EKG sticker, anything sticky to be removed from his body. Even when we use the adhesive remover which makes is just peel right off. This being said… he had approximately 14 EKG stickers put on the night we went in to the ED, these other stickers that have little snaps on them and there were 3 on his stomach and 4 on his back, and then 3 more leads that are stickers with wires coming from them. Well, they were able to get his port de-accessed, but we came home with all of the other stickers still in place. He looks like one of his sticker books.
What a way to start the new year… I know that someday it will eventually get easier, but today has been one of those days where you really wish you weren’t going through this. I am off to try to get some sleep so I can get a fresh start for tomorrow. Hopefully he will be in better spirits.
by evanshou
Yay! I am so glad he liked them and they fit! It was an awesome day!
Hi guys. Just wanted to let you know you are in our thoughts and prayers. I feel owen’s pain. I am available any time to chat. We have dealt w/the low potassium issues. Every time I walk into the ED I get 3 bags myself. It is a very common issue. No worries. It will be ok. Jake sends his love!. We can’t wait to visit w/Owen. Let us know when he’s up for it. We are not at stepping stones right now as I go through some harsh treatment. Trying to cut down on the colds and flu, so we are germ free! Enjoy the new yr.
Renee….. You and your family are in my thoughts and prayers everyday. Owen is such a brave little guy. He is lucky to have such amazing parents with him at his side. I admire how brave you are too. You have always been a strong person. I wish I could be there to help out some way. Love ya!