Ups and DOWNS.

Sat. Morning
Logan is doing so good now. After not being able to get his pain under control we went thru a short phase of him being too stoned. So it has been a balancing act that I think we have under control now. He is drinking from a bottle, about 2oz. at a time and based on that they say he is ahead of the curve. The attending here in the ICU said that most kids don’t eat at all by mouth while they are still in the ICU and this was very encouraging. They are taking a big line out today (one that is in his heart) so based on how well he does after that will determine whether we go to the floor today or tomorrow. They said that we should prepare ourselves for a week on the floor. Ugh…
He is down to a very low dose of diuretics, Tylenol w/codeine, two antibiotics, and a heart medicine. By the time we leave the hospital it should only be 1 antibiotic that he has to take for life because of his asplenia and a heart medicine that he may have to take for 3-6 months.
I have been able to hold a few times, but because he still has an arterial line and a broviac line in it is difficult and uncomfortable for him so we are currently waiting for those lines to come out before we really start snuggling.
He still has a feeding tube in because he is taking just slightly less than the recommended amount so we are close to getting that out as well.
Sat. Afternoon-
So we were discharged from the ICU and went to the floor when we had an ‘incident’ We have had these 3 times so far since being here. Logan gets some gunk in his lungs and can’t cough it up and his oxygen levels drop and then people panic. We know that nothing bad is going to happen and that he just needs to get the gunk out of his lungs and his O2 will be back in the 80s again, but the nurses don’t and they panic. Then they start a chain of events that includes turning all the lights on, undressing him (which makes him cold), they start pounding on his chest, suction out his airway, give oxygen, and then when a cardiologist gets there his heart rate and blood pressure are up, and his pulses are low because he is cold. Then they give him medicines to counteract these effects that were only brought on by the sacred nurses. It’s a vicious cycle. Thank god though for the critical care cardiologists who have some ‘sense’ to them. They said that he just needs to calm down, get warm, have the lights turned down and sleep. No more medical interventions. Then he whispered to me that they just didn’t know him over there. The ICU cardiologists didn’t think he even needed to come back over here but the regular cardiologist did. So here we are back in the ICU once again. Ugh…..
. They completely dropped the ball and now Logan is suffering. Scott and I think because he was doing so good after surgery that they got over-confident. His pain was not managed well at all, and either was his fluid/electrolytes. I know that both are tricky issues but he literally went from 6 days of morphine to Tylenol (no methadone) and they dried this kid up so bad his eyes were completely sunken in his head. Now there is confusion as to whether or not he aspirated the other day when a code arrest was called (unnecessarily) on him, I know that he didn’t because I have seen him aspirate before and this was not it. But because of this they aren’t letting him eat until he is stronger and in less pain just to make sure. So not only is Logan in pain he is STARVING. His cardiologist has apologized 4 times now about the arrest code being called. The surgeon Pedro Del Nido did an echo this afternoon just to check and make sure that nothing is wrong with the surgery. They don’t expect to find anything because once they give Logan adequate pain medicine all of his stats fall back into place, but we are still waiting to get an answer about that echo. Also, they changed his antibiotics to “the cannon of antibiotics” because he still has an elevated WBC count. He has no spiked fever and his x-rays are clear but because he is asplenic they claim they are being overly cautious. I am starting to get a little worried about this though.
The other thing that has got me very upset is that they changed the dressing where his chest drainage tubes were taken out and they found that the sutures were never pulled tight enough and he has open and weeping holes now in his chest. How did they go 5 days without checking this? It is very upsetting. The attending, a fellow, someone from surgery, a nurse practitioner, and someone else all came in to exam the holes and everyone agreed that they are not infected and probably aren’t at risk because of the heavy antibiotics he is on. Which also reminds me that these antibiotics are also not agreeing with his stomach at all either which is another problem to throw on the pile. Really frustrated right now and I am really hoping that something gets figured out because I hate seeing him like this.
Last night we finally had a decent nurse that listened to our concerns and tried to help us. She let us give Logan pedialyte which satisfied him for a bit and gave him a full belly which allowed him to at least get to sleep. This morning during rounds we had a new CICU attending that hasn’t seen him at all in the two weeks Logan has been here and it became quickly apparent how little he knew about our son. We expressed our concerns about the feeding (or lack there of) and he just got really defensive and wouldn’t answer our questions about when we could start giving him feedings on demand. He also couldn’t give us any answers as to why we weren’t able to feed him. He said something about him retaining too much fluid because BM is mostly water. We explained that he is only taking in 2 oz every couple of hours and that is not going to put him into congestive heart failure. He agreed and so we asked him again why can’t we feed him and he had no answer. So Scott got really mad and asked the doctor what are we suppose to do when he is having a temper tantrum because he is hungry? When he has these temper tantrums he stats all drop and everyone freaks out and wants to do medical interventions (which is what happened the other day when the arrest code was called) and really he is just mad because he is hungry. We are just in this vicious cycle. At least his pain is more under control. I asked why the ball was dropped on the methadone and no one had an answer. They said typically a baby on Morphine for 6 days can go off with no withdrawal symptoms was the answer. I find that REALLY HARD to believe. I have been on morphine for 6-7 days and had massive withdrawals even WITH methadone. Just crazy. They did finally confirm today that Logan didn’t aspirate the other day during the “arrest incident” which I always knew was the case. Huge communications problems have occurred here and the underlining issue remains that if the doctors just would have listened to the parents ALL of this would have been avoided. We told them he was in PAIN for days, we told him he is STARVING for days, we told them that when they called the ‘arrest code’ that he just needed to cough. No one listens to us though. It is so frustrating and the person that suffers is the baby. I hoping today that with the methadone and now being able to start feeds that things will start to improve.

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