Shelley texted me this morning asking me how is he. I told her that gas was showing that his CO2 is 58. OK... we don't like that number and she got mad, she said that the number is not good at all, which I totally agree. She asked me, do you want to throw a fit or I do? I said we'll go there together. There has to be a vent setting change. So, we went there and Tara was the NP, she kept telling us that he seems to be breathing good on his own and didn't need the RR. I was wondering if that's correct and Shelley said something that straigthened up my thoughts. If he doesn't need a RR, he doesn't have CCHS and what's the point of being trach? Good point...
CJ and I came in and they were trying to give us reasons that his CO2 is still in an ok range, etc. Then, Shelley came and we said we want to talk to the NP again. Immediately the NP came in and to me, the NP seems very defensive, saying that Shelley was attacking her. I don't see that at all because her intentions are just to make sure that Laynson is ok. Anyway, she said that if we want to call Dr Gelfand or if we want her to give a rate, she can. CJ said that all we want is to get him to a better state, we prefer him to be in the 20s rather than the 70s. We can work up instead of having to slowly work down because it has been days that we are in this condition. We just want to get Laynson well and make sure that he is ok. Everytime we call, they will tell us that he's doing great, of course he is doing great, he is lerthargic, hardly moving, just sleeping all the time because he just couldn't move much. According to Shelley, if you have high CO2, it will give you a headache and I totally believe that, if not, he would be up and kicking but he was just sleeping all the time.
We went out for dinner and just got back. Renee is the NP, I think Tara just didn't want to deal with us, sorry, not that we have questions on your ability, please don't take it the wrong way, we just want the CO2 for Laynson to come down, it has to be because we dont' want him to have a seizure. We have had that happen and we don't want that to happen and we heard of kids with CCHS having too high of a CO2 that caused them to go into coma. We do not want to go that route at all.
Anyway, we came back from dinner and Renee was there and they just got done with an art stick. His CO2 is now 39, YAY!!!! Now he looks more alert and kicking. I think they now agree with me that maybe he's not feeling well? They are doing a blood couture and giving him antibotics. I swear his secretions are getting yellowish, that tells me that he's not doing too good. His tummy seems a little firm these 2 days too and they are watching him. I am glad that Shelley is always here to help, people may think she's creating a scene but to me, she is the sweetest person, an angel. So, for those of you who thinks she doesn't have the rights to talk on behalf, you guys are wrong, she's his god mama, just like his mama and she's taking charge being his mama. Though, as we are sitting here, the CO2 readings is still high, 52.1 :( It's off by typically 1-2, which tells me that his CO is now about 48-49. Not good.
Sigh,.... anyway, they finally managed to get the IV in with 4 tries, twice by the nurse, one time by the NP and 2 times by the IV team. Ohh.... that's 5 tries. Poor baby. We thought he doesn't have to be stick for a while but I guess, it's soon. Hopefully, he doesn't need another central line or picc.
Ok... it's close to midnight now andd it's 60, I guess he is starting to be in deep sleep. :( Baby, you are already prolonging your stay here, you don't have to create more issues. Sigh.
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