July 10, 2010

Some Improvement

This morning was a bit trying for mom as the doctors put Tim back on a do not eat order in anticipation of a procedure that they might want to do. After that she got frustrated at the fact that no one at Children's seemed to have a plan for what they wanted to accomplish. Mom called dad after this which got him moving with Lou to come back to the hospital to try and take care of business.

After dad got there he called U of M to try and talk with one of the attending cardiologists to see what we could do as parents of a patient in terms of forcing the issue of having someone at Children's get his most recent records and studies as well as speak with one or more of the doctors that had worked with Tim post-operatively. Dr. Schumacher at U of M who was the attending on today, said there wasn't a lot they could do to press the issue on our behalf but did suggest that we contact records to try and get a copy of everything sent to us so we could at least have it for someone to look at. He was also going to try and contact Dr. Bradley, who had worked with Tim since immediately post-op through to discharge, as well as speak with some of the other doctors there to see if there were any other options they could come up with for us with assurances that he or one of his colleagues would call us back soon to follow-up.

After having this conversation dad and mom then had an in-depth conversation with the lead doctors at Children's about our concerns regarding the failure to speak with anyone on the U of M cardiology team, the failure to get his records sent and our concerns about the decision making process that was being followed. We urged them to speak with Dr. Schumacher to get some more insight and to attempt to follow-up with Dr. Bradley which they did immediately after our conversation. We also urged them to get Tim's chart and records from U of M immediately as well, which was discussed with Dr. Schumacher also.

The doctors here admitted that in their urgency to try and determine what was going on with Tim they did not do some of the simple things like get records right away and at times had too many cooks in the kitchen who were all offering their opinions without discussing them amongst the other doctors so they would have a single plan of action. As we were reminded, if you ask 10 cardiologists what to do in any particular situation you will get 15 different answers and they appologized for some of the confusion and at times discordant information as well as for their failures regarding getting consults and records. We were all able to walk away from that conversation feeling better about where things stand and how things will be approached moving forward.

On the clinical front, Tim's most recent chest x-ray showed that more fluid has been drained but that Tim's left lung is not fully inflating which they plan to treat with some vibration therapy to try and shake some gunk loose. He continues to pee regularly which is the all-natural way to get rid of the excess fluid. As long as he continues to pee well there won't be any need for surgical intervention on that front. There is still some concern about his ventricular function, but until a comparission of a current echo vs. the ones done in Michigan can be done no final decisions will be able to be made about what his function looks like. They are also continuing to monitor his rhythm although currently that looks fine. There is also the mystery blood clot that was observed once but not again that they are cautiously treating with some blood thinners to be sure it does not cause any problems if it really exists.

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