Last night sucked. It wasn't anywhere near scary levels of the past, but it still sucked. The IV diuretics worked for a few hours, and then the desatting would start all over again. It was Drs in the room all night, Caelen crying and coughing, immediate X-ray, chest pt at 4 am and then finally sleep again at 7:00.
His lungs got wet and the Drs couldn't catch up with the diuretics. I'm pissed. I don't know any other way to say it. On Thursday night after he got rehydrated (through nothing other than pedialyte thru his g-tube, same as I did at home), he started getting puffy. I mentioned to the attending that we may need to start diuretics. He said no, wait till the morning. Yesterday morning I started asking for an X-ray and was told it wasn't necessary. Caelen continued fluids. By noon his eyes were really puffy and he started sounding junky. The lasix didn't come until 1:30. Now we were behind the 8 ball. I kept asking all afternoon about X-rays and diuretics, but was told Caelen was fine, even though he had been desatting all afternoon.
Basically, after a long night, I told the resident, you guys may be the Drs, but I know my child better than anyone, and if I ask for an X-ray, it's for good reason.
Caelen is doing much better today because the Drs have upped his diuretics. I'm just really upset we lost a day because the team didn't listen to me. There's more, but I don't want to keep harping. I just wish CHOP wasn't so far away. I even suggested to the resident that he call CHOP and get a plan together. Mean? Maybe. Did he? No. But this hasn't been a good experience.
Time to quit typing while...well, time to quit typing.
I'm so sorry that you guys have had such a rough go of it these past few weeks, and especially last night! I have been in your shoes so many times wishing CHOP was much closer to wherever we happened to be at that moment. Mean....nope - I have a tendency to feel bad but am always reminded that I am my child's only advocate. You do know your little man better than they do - and you care about him a heck of a lot more too! Will be keeping you guys in our thoughts and prayers~
ReplyDeleteHeidi Schlagheck
UGH! Rule #1 - Always trust the MAMA - especially if the mama is Katye Gorman
ReplyDeleteGive em' hell Katye! So sorry they didn't listen to you! Heidi's right, you're Caelen's advocate - never feel guilty.
ReplyDeleteKayte and Caelen....I am so sorry for all this sad stuff. you both deserve so much better. Gods plan is sometimes hard to understand. I am praying and praying for healing and warm sunshiney days in your very near future. Be so strong and keep kicking butt. C needs his Mommy!
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