Wed. (6/16)
I was very anxious to hear what the results of the cath. conference were and got there pretty early. Guess who was there. Yes, it was another day of Humpty Dumpty (see previous post). I had yet to this point had the same nurse twice so it didn’t even occur to me that we would have her again. The morning went by very slow as I didn’t hear anything from anybody I really wanted to know if Logan was going to come home tomorrow. I called the cardiologist early afternoon to see if he would get back to me and tell me the news. While I waited to hear back from him, I had to sit yet again with that nurse while she kept pumping air into his NG tube. I showed her that when I check placement I let some the air out before I pump it back in, and she looked at me like a deer in headlights and just said ‘Oh, ok.’
Unbelievable.
Logan has been super sleepy and when he eats thru his tube (especially while he is sound asleep) he doesn’t burp and has no way of allowing air out of his belly. Not to mention that some of these nurses act as if they are pumping up a bicycle tire while futzing with his line (not gentle at all). So anyway, Scott and I tried to get ahold of a Neonatalogist to express our complaints to him (about Humpty Dumpty) but of course the NN was ‘tied up.’ I literally have asked to speak with a NN almost everyday and everyday they are, ‘tied up.’ I said that it was really important that I speak with someone so they eventually sent over a resident. Scott and I expressed our complaints about the one nurse and asked that she just not be assigned to us again. She said that was no problem. When Humpty Dumpty’s shift was over we had a new nurse who was once again wonderful.
Logan’s cardiologist called in the afternoon and told us that all the Dr.’s agreed that Logan doesn’t need surgery right now and that the next step was to get him home. So we spent the afternoon watching videos and finishing up all the home care teaching. We went home in a great mood, and were very excited to pick Logan up the following morning.
Thurs. (6/17)
Was a horrible day. I completely lost my temper with the NN and got into a very ‘heated’ conversation with the surgeon. It was not the most appropriate reaction that I had, to say the least, but there were a number of circumstances that led up to it; it really was the perfect storm.
I showed up with my Mother, Scott had a business meeting he couldn’t get out of, and we thought this was going to be an easy day of just getting discharged. As soon as we got there I was met by the NN and the cardiologist who told me they were going to pull the rug out from under me by not letting Logan go home today. They started explaining something about him not eating, kidney function, BUN levels. They kept telling me that these heart kids just have trouble eating and digesting. They said they were going to take him off his diuretic and stop adding formula my breast milk. Because they were going discontinue both the formula and the diuretic I was under the assumption that it was the combination of the both that caused him to get so sick. It says right on the Similac can that changing the water/formula ratio can be hard on a babies kidney’s, and I couldn’t understand why they could miss something so basic. The NN was incredibly condescending and kept asking me if I understood the heart condition my baby had. I told him that the problem was that he didn’t understand my son’s heart condition. Whatever they were telling was not adding up in my mind. It just wasn’t making sense that this was directly related to his heart. Later, when I got home I looked up the medications that he was on to see if that was the cause. I didn’t think about it at first because MULTIPLE people in the NICU had told me the meds he was on didn’t really have any side effects. I am quickly learning that most people don’t know what they are talking about. Anyway, his problems were from the medications he was on.
Now, if someone had told me upfront, that they were going to put him on meds that may make him uncomfortable for a bit and while they play with the dose, I wouldn’t have had any problem. But no one told me. They just kept telling me he was like that because of his heart condition and that something may be wrong with his kidney’s and/or intestines. Which I still believe was a misleading explanation for his state. I am still perplexed as to why it was explained to me that way.
Another extenuating circumstance that adding to my anger/sadness was that he shared a room with 6 other babies. One had passed that morning, 2 were hour by hour (just waiting for urine output to stop), one had lymph nodes leaking and was undergoing experimental surgery, and one was born at 22 weeks. It was, to say the least,a very stressful environment to be in. One of the mothers had cried on my shoulder that morning and another mother was sitting next to me crying in the NICU all day. Now, by nature, I am incredibly skeptical of everything and fairly distrusting by default; and the only Dr. I completely trusted and had confidence in was his cardiologist (Dr. Patel) and he was not returning my calls.
It was seriously the worst day of my life.
Fri. (6/17)
I am not even going to write about this day. Myself and Dr.’s frustration peaked this morning and it wasn’t pretty. I went home to sleep and Scott stayed at the hospital. In the end everything was worked out and Logan was feeling better off his diuretic and we were told that he could go home tomorrow.
Sat. (6/18)
Logan got to come home. I can’t even begin to explain how happy I was to have him home.
There are just no words.
