Nothing really has changed with Elias. He is doing well and is his happy go lucky self. He is tired because they insist on waking him every four hours, but he manages well. Mommy gave him a haircut yesterday, his hair was getting in the way of the trach ties. He had some time to sleep in Mommy’s arms yesterday as she rocked him. That was much needed for both of them. Otherwise we are still just here and trying to get through each day.
The plan continues to change frequently the problem is the patient is not changing so all of this back and forth makes us feel like they really are not sure what they want. This morning the plan for the next several days is to do anther 12 hour window with the Passy-muir valve, which Elias did well with yesterday. On Monday, transfer him from the servo vent to the LTV which is the home version of the vent. After that begin weaning him off the LTV overnight and do a sleep study. This is in direct contradiction to what we discussed on Friday concerning the LTV. We were told that if he tolerated the Passy-muir valve and they continued to think going home on no support was necessary then we would not switch over. But today we are going to switch and wean? Why not wean off the servo? Again we are so confused. They say one thing then turn around and do the opposite without any justification. They act as if this was the plan all along. When we question it they just give us a stock medical answer of well this is what we do in cases like this. The other thing that goes opposite what we were told is the sleep study. We already had one first of all and nothing showed up. It was brought up that Elias may need one by the “big docs, Wood/Rutter, but they only thought it necessary if he had another episode. He hasn’t so why are we doing it? We are starting to feel like Drs. Wood/Rutter are not in on this plan at all. We are considering calling a care conference and requesting that they be present. The current attending has just been too all over the place with her ideas and opinions. last Monday it was certain we were sending him home on overnight Si Pap, by Wednesday despite the bad news about his airway it was send him home off Si Pap. Now we are switching to a home vent (LTV) only to be weaned off to go back to the home off Si Pap. It would make sense to switch to the LTV so that he has adjusted to that should he be unable to wean, but when we asked to go forward with that last week she told us that he would not go on the LTV until they decided he would go home on Si Pap and at that time he was not and according to her plan still he is not. Confused yet? I know we are. The reason we want a care conference is to first ensure that Wood/Rutter are involved because i think they have left it in her hands and we are not comfortable with her decisions so far. They are unfounded and wishy-washy most of the time. Secondly this is a HUGE decision and history has shown us that we can not always trust one opinion as we have in the past. Unfortunately in the learning hospital there is not much opportunity for a second opinion. You can only work with the doctor on service. However, we need another opinion and we want it from the two doctors that know his airway the best now. They were the ones who said it was not a safe airway so how do they feel about the ultimate plan or what are their thoughts at least? We told ourselves going forward we would always seek a second opinion about things like this and we are holding fast to that principle. How can we buy in and support something that we can not understand, but the doctors just feel like we are being cynical and do not directly address our concerns, mainly because they can not and do not have much sound evidence that this is the correct decision or course. We are continuing to pray that we will see the way, but right now it is cloudy and very scary. This is just not a very comforting place to be right now and we are struggling a great deal with all of this. I contribute it to the doctor and the lack of confidence in their own decision, but they refuse to admit that. That makes it so much more difficult.
Tomorrow, as usual for a Monday will be very busy. We will be seeking the conference and talking more with the doctors on their rationales. We will also be seeking out the people we need to discuss and file serious complaints against the general surgery team here. They again blew off a page for someone to come and look at Elias’ open wound as it appeared to be opening again. we tried to divert from calling them and asked for the wound team, but the damn protocol dictates that since it was a surgical wound that they have to be contacted first. We knew what was going to happen and we were right! I am not going to get into the details of all our troubles with them, but time and time again they have literally blown us off. There have been 3 times that they just did not show up after acknowledging a page. Not to mention the countless other problems we have been documenting. We even told 2 residents and a nurse practitioner that we had lost all confidence in their team and NO ONE has even come to speak to us on why? Well somebody tomorrow will be hearing about all of this. Sorry from a million people will not be acceptable this time. What is really sad about all of this is other doctors and nurses are constantly telling us that this is a common occurrence with them? I can not believe that the hospital administration would allow that to be status quo or acceptable and very sad that the staff feels this way. That signifies a real problem that needs addressing immediately. It’s time to live up to that motto and “change the outcome.” So if you feel the world shaking at some point tomorrow, it is probably just me making my point!