With four weeks left until the due date, we're getting very anxious to have the babies home. This week, like so many others thus far, has been one of dramatic heights and valleys.
Thursday Taylor had his one week post op check on his eyes. Thankfully the doctor says that they "look fabulous". As a result, she had no problem sending him back to be with his sister. Hurray! No one is happier about that than us! So his transfer back was pretty uneventful, but that evening was less than uneventful! When I got there around four, he was resting comfortably at 70% oxygen at 3 liters. I was informed by his nurse that he had just experienced "an episode". Which she described as "de-sating". Because of our past experience with this particular nurse, I didn't pay any attention to it. All of sudden about thirty minutes later he began to have another one of these "episodes". I found the whole event fairly peculiar because Taylor's breath rate had been very good through the whole event... and turning up his Os (oxygen) didn't really help him recover. So this particular nurse, who is known to us for her premature and drastic reaction to Taylor's desats, just kept turning up his oxygen. Never bothering to realize that it wasn't helping him at all. When Jon finally pointed the fact out to her, she just acted like it was this stupid coincidence and kept on turning him up.
Within about ten minutes, she had turned it up to 100%. It still was not helping. She ended up bagging him for a few minutes in which his saturation shot right up to the 90s. So then she turned of the bag and put it away. Within minutes, almost seconds, his saturation began to fall again. So she pulled out the bag and did it again... we did this about four times. During which I suggested at least three times that something else had to be wrong... His doctor happened to be in the room, taking care of other babies, so he immediately ordered that Taylor be put on his tummy (where he oxygenates the best) and that a gas and chest x-ray be taken. Both turned out to be the same as usual... He also ordered an increase in oxygen flow to 6 liters, in the meantime, Taylor continued to have these episodes.
I had mentioned that I thought it maybe a mechanical problem since he was clearly breathing, and trying to oxygenate himself... but the RT who came over to look at things really didn't think that was the problem. He lazily looked over the system making sure that the connections were all tight. He did not take the canula out and actually do anything to check whether or not there was flow... I asked them to check to make sure the prongs were not clogged, and I had them suction out Taylor's nose... neither of which really helped. About an hour after all this began and three or four cycles of giving blow by then taking it away... a new RT came on. She, out of curiosity, changed the source of the oxygen Taylor was connected to. All of a sudden we heard this hissing spew as the oxygen came out of his nasal canula (probably for the first time since he returned hours earlier.) None of us noticed that there was no flow coming from his canula when we checked it for blockage, duh...
Anyway, so Taylor had probably been oxygenating himself totally since about 2. So by 3:30 he was probably getting tuckered out, and that caused the first "episode". The subsequent "episodes" happened faster and faster because they kept giving him a little bit, and then taking it all away again (although not realizing it.) So he had a totally unnecessary chest x-ray and blood gas. As a consequence of the whole problem stressing out his system, he ended up getting a shot of lasix that he would not have needed had he been getting oxygen that whole time. They also turned up his oxygen to six liters and dropped his feedings to 34mls. Lets not even mention that the medical care "required" during that time was increased and will therefore be charged at a higher acuity... even though the whole thing could have been avoided if the equipment had been properly checked for appropriate function.
This all got me thinking about how much of medical charges could be avoided for just such situations. It also reminded me just how important it is for medical staff to be very observant and vigilant about problem solving. I really do believe that most of the stuff that was done would have not been necessary if that first RT would have checked that there was in fact flow from the nasal canula... always goes back to those ABC's! Not that this is solely his responsibility. The nurse, for example, should have realized very quickly that the pattern of these "episodes" did not resemble the typical pattern of de sating, and that Taylor's vigorous attempts at breathing with out actually oxygenating was not normal. When Taylor really de sats because he needs more oxygen, he doesn't struggle so much to get air. It also doesn't happen so predictably, and increasing the oxygen always helps. Additionally, between cycles of blow by, he was very alert, looking around and suckling... a baby who was having respiratory distress because of infection or disease would look more limp and less active.
One of the nurses once told us that the kids "survive in spite of them [medical care providers]" This I find more true every day. It also makes me want to take them home more everyday. I get these feelings like I could care for them better, just having only them to care for. I know that this is faulty logic, but you think it anyway.
I was very proud of Alivya during all of this... she was the only baby in the room that was not crying or alarming! Alivya has had a pretty long week though. She continues to have feeding issues. Her residuals yesterday were fairly large and she stopped gaining weight. Last night she actually lost weight. They made several changes to the type of formula they have been giving her, but nothing really seems to get digested better. So yesterday her doctor decided to do a lower GI study. Preliminary results were negative, which tells us that she doesn't have a narrowing or blockage in her lower GI track. This is good, however we still don't know why she is having so many problems. So today sometime they are going to do an upper GI study. As much as I want to know why she is having so many problems, I don't want her to have a blockage. This is a problem that would need surgical repair, and of course, they don't do that at this hospital... so she would be transferred. Damn, we just got them back together! I can't even begin to describe what this is like. The only good part about this week, is that it went by very fast. Probably because we have not had two seconds to spend on anything except getting from one hospital to the next.
In other news, we finally got around to cleaning the house up and getting it on the market! Its like pushing that first domino over, and hoping that all the rest of them are placed (with out real measuring tools)in just the right place to continue the effect. This sort of random luck is not how I am used to living my life. Especially since I feel sort down on my luck these days. Well, here is hoping that life actually falls into place for once... not holding my breath!!
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