They never call me when something is going on with Spencer. Didn't call me when he was bleeding, didn't call me when he needed an embolization, didn't call me after the embolization was done. I have had to call myself to get the information I'm looking for. Spencer has even asked the nurse to call me and she didn't. She gave me the reason of, "sorry I was just so busy with three patients I couldn't get away". Well I'm sorry but I think I have every right to know when something big is going on with my husband. It only takes you 3-5 minutes to give me a call. Have someone cover you or have the doctor call me. I don't appreciate being out of the loop.
I've been here for about an hour now and I haven't seen his nurse. About 5-10 minutes ago I asked to speak to her. I'm sure she's on her lunch. Not to mention it's really not my most favorite nurse who's taking care of him today. Lets just say she *really* likes to complain. =/
I am going to have her page Dr. Liou, one of the CF doctors. He tells me like it is and doesn't usually hold things back from me like the other doctors do. I need to speak with a doc asap. I am pretty worried. Things just really suddenly got bad. Of course I don't know how long his Co2 levels have been high - but it all seemed to happen suddenly yesterday. His vent settings were at 16/5 and now they are at 26/5. They really didn't want to have to go up to 26 because the higher his pip is the bigger the risk of his lung expanding too much that it will pop a hole in it which would collaps it. =/ So they really don't want to go up any more. His Co2 levels really aren't going down - they are still hanging around in the 90's. His pH is a little low but not too bad. No one wants to give me the actual number. Something isn't right and I'm scared.
I am getting really frustrated with getting information from the staff here. No one is straight with me and I don't feel like I deserve that. I've been dealing with this for 3 years now and this specific situation almost 3 months. I think I can understand what everything means. I ask what his Co2s are and they just say "they are up, pretty high" so I ask what they are and they kind of give me a blank stare and then tell me the number and explain, again, that it's really high. Then I ask what his pH is and they say "the same, they are getting higher though" and so I reply.. ok what is his pH? So they either say that they aren't sure or they give me the number and continue to tell me what's normal etc. These are the same people that I talk to every day. You think they'd get the point that I want to know the specifics and that I understand what they mean. I feel like when it comes to the end of the day they get that I want to know everything and are upfront with me.. but then shift change I have to start ALL over again - which is REALLY frustrating to me. We've been in this unit over a month - you'd think they'd start getting the point. Ahhhhhh.
They also put Spencer back on a strict NPO diet >.< I'm not mad that they did this - I'm annoyed that they keep changing it!!! One doctor said he was aspirating and put him NPO - the next doctor said he was okay to eat and drink..... now they are saying he's aspirating again and put him NPO. If you think he's aspirating then please DON'T put him back on a normal diet!!!!! Communication is NOT happening between teams right now and it's not okay!!!
I just don't even know what to think. I am really really concerned. I don't want anything to happen =( Things are going in the opposite way that they are supposed to and it terrifies me. I just want him better - as always. I'm afraid things are just going to continue to decline. Of course I don't know this but i just have that feeling. I'm afraid his lungs are just giving up =( Gosh I really don't want to say that.
I don't know what else to say. I'm just going through the motions today... Doubt I'm going to get many answers until Monday as I just found out Dr. Liou is out of the state until then. The pulmonary team isn't the best with communication and letting me know whats happening. As long as Spence hangs in there until Monday I guess I'll survive.
I'm asking for so many prayers. For not only him but myself - I'm really struggling. I need strength to get through this and support.