I've started to realize I've become a Mama Bear for Sammy. He's lately had a nurse that makes me very uncomfortable. I've given her a few shifts to give her the benefit of the doubt, but she just is so inexperienced that it makes me so uncomfortable. I know she needs to practice to get experience, but it's my son's life, and I never feel like I can leave when she's there because it scares me. We left for lunch yesterday and came back and he was all slouched down and his hips weren't aligned (which could be bad for his long-term development). To top it off, earlier in the day, Cam had had to move his OG tube out from behind his head, too. I just can't deal with it anymore. His tube got knocked out of his adapter yesterday, too, and it took her a few seconds to realize it versus his other nurses who realize right away that that's what's going on (hello alarm bells on the respirator). We've had problems with the adapter as it is, so it's not surprising, but just not to realize that that's what it is is just scary. To give her credit she did notice that one of his IVs was leaking and needed to be re-placed. However, she had to call a more experienced nurse over to do it. That's fine, I respect that she didn't try when she couldn't do it. However, two nurses came over and one said she could re-place it in his head, and the other said his arm. I was very uncomfortable with his head since it's the ONLY place left that we can touch him to comfort him and I tried to voice that, but that's where they placed it anyway. And the medication running in it was a medication that irritates the injection site (amphotericin). LOVELY! I just felt so discouraged after I left the hospital at yesterday's shift. His night nurse wasn't bad, but I haven't really gotten the most comfortable with her yet either. It bothers me that we don't have a good night nurse primary team...though I guess the day nurses are more important since they interact the most with the attendings and we do have a good day nurse team...
Every time I leave the hospital I start to get anxious...wondering if the hospital is going to call me at all while I'm gone. I had started to get over that until the 4:30am phone call last week. I had even started to feel like I could go home to sleep until that phone call. Don't get me wrong, David's House is nice, but it's not home. I know I would sleep better at home. I know I would be more comfortable...but my anxiety is getting the best of me. Today I even started to feel like going home at night would be nice...until the end of shift. Sammy likes to protest end of shift. Today has consisted of trying to get his blood pressure under control. He had been off of blood pressure medication (dopamine) for almost a week and then when he got sick, he needed to go back on it. That's fine...but they've had to play with the dosage all along to get him to have good pressures. So yesterday they checked his cortisol levels to determine if he needed hydrocortisone. His level was 8 and the doctor said that with the stress his body is under they would expect to see it at 15-20. As a result they decided to give him a steroid called hydrocortisone. They had hoped to see a difference after he got it...no such luck. They started him on another blood pressure medication in conjunction with the dopamine, new one called dobutamine. We should have seen a difference from this one within a few minutes of him getting it, but then his blood pressures were dropping lower than they'd been all day. It definitely didn't make sense. It scares me...because if his blood pressure isn't under control I'm not confident that the other stuff is going to get better. I mean, I guess the good news is that he is still showing no signs of infection (though he is on a bunch of antibiotics) in relation to his bowel perforation, but we won't know for awhile if the bowel perforation is healed. The surgeon and neonatologists seem pleased with medical management of it for now which is nice because surgery scares me, too.
I am just at a point where I feel like nothing is getting better...absolutely nothing. I just want to see one or two things improve instead of everything go backwards. I know this is a roller coaster and that for each step forward we can take four or five back, but it'd just be nice to get some confidence and hope re-instiled. Instead, I just keep getting more and more scared...
We did meet with the new doctor this week. I haven't had any complaints about him so far and meeting with him was nice. However, I was hoping to come out of that meeting with some level of relief and maybe a bit of hope. We didn't learn anything in the meeting we didn't already know, really. I mean, he went through any and all questions we had, but (for good reason and I understand) he couldn't give us a good outlook of how things are going to go. He confirmed what we knew: We haven't turned that corner of things looking up yet. Yup, knew that already. This doctor isn't concerned about his lungs at the moment, but feels his PIE has pretty much resolved (one good thing, right?!) at this point, though his lungs are still hyper expanded at the moment. His bowel perforation is one of the bigger concerns at the moment, so his ostomy bag will stay in place for a total of 7-14 days or until it either falls out or stops draining. So far he's still got drainage of some type. Toward the end of that window, they may run dye through him to see if it comes out where it should or goes into the bag to determine if he's still got a bowel perforation. I'm crossing my fingers that it will heal itself and he won't have a blockage or need surgery for any reason on his bowels. His heart is still a bit of a concern, but this doctor doesn't seem convinced that the problem is his PDA, though he thinks it may be the likely candidate, it's not 100%. The good news we did get is that he felt that Sammy could likely withstand the surgery to have a PDA ligation. He is ordering an echocardiogram tomorrow to look again and make sure there is no other issue that Sammy is having with his heart other than his PDA since Sammy didn't respond to the hydrocortisone the way they had really hoped. Other than that, they are still focusing on his nutrition to make sure that he's getting as many calories as possible so that he can get bigger and feel better. If he's got more calories, then he will feel better and his body can heal itself better. So far we haven't seen the results of that yet. Here's hoping that a few days of more nutrition will improve things and we'll see some weight gain!
Other than that, I don't know what else there is to share...here's hoping I don't get a phone call tonight and that I can go in tomorrow to find my baby doing a bit better. Oh yes, the last thing to talk about...his arterial line (in his foot) has now been in for almost two weeks which is a long time. They were starting to question if it was actually reading his blood pressure properly...when I left, the nurse and I were both questioning it...so perhaps I'll find out in the morning that he has a new art line and his blood pressures are reading correctly and looking better...hey, a momma can hope, right?! That's my wish for now...oh and of course getting to snuggle my baby again would be really fabulous, too.
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