'Tis not wise to mess with a savvy creature protecting thy offspring!

Not having the laptop has really stunk the last few days as I have not been home at all to even update the blog. There has been a lot happening with the plan the last 48 hours. We have pretty much had all we can take of the Attending on duty and thankfully her last day on service is Friday. As we told you in the last update Sunday the plan was all over the place and wishy-washy. We set out to clear things up on Monday and it ended with myself being very upset over the way things had transpired through the day and some of the things that were said to me.

Monday morning began with the same frustration that the weekend brought with it. Both the Resident and the Fellow came in to the room with completely different versions of “the plan” that were not even remotely close to what we had been told on Sunday by the attending. During rounds the sleep study was mentioned by the attending. I interjected the question, “will this sleep study be on Si Pap since we have just had one on room air a few weeks prior?” The answer with a very sharp tongue and glare was NO! I asked why, that was my first mistake. Apparently with this doctor it is not ok for the parent and advocate to question something that they first off do not understand and secondly are paying for! She condescendingly answered by telling me, “ first off his anatomy has changed (vascular ring repair) & it is necessary to do the sleep study on whatever we decide to send Elias home with.” I decided not to continue this debate in front of 15-20 other doctors and medical staff so I zipped my lips, but told her we needed to speak when rounds were complete. As I waited, for hours literally the fellow came back to inform me they had a sleep study on the schedule. This coming Friday…on Si Pap! I questioned why when the attending had said just the opposite. She could not answer my question, she was simply told to schedule it that way. AGAIN the plan had changed and contradicted what we were told just hours before! This was really more frustration than I could take. I told the fellow we wanted a care conference and i needed to speak with the attending immediately. A few more hours is the definition of immediately by the way. She came in and asked what my questions were. i explained our frustration with the miscommunication and constant changing of the plan without including us. I reminded her of the hospital’s “Family Centered Care” philosophy. She told me she did not need a refresher on hospital policy. I almost said and wished i had, no but you need a refresher on professionalism, respect and courtesy. I bit my tongue, but my temper was rising. I pointed out the example with the sleep study and asked why she contradicted herself. She had the audacity to sit down and tell me that the plan was changed because it was becoming apparent that we were afraid to take Elias home without support. in as calm a tone i could muster i told her that we were not, but we were questioning what she saw that made her think that going home on no support was the best and safest long term solution on an airway that 3 weeks prior was deemed too unsafe to go home. And while there were anatomical issues resolved the physiological component was shown to be very very close to the same last Wednesday. She sited how well Elias was performing and I agreed, but that did not answer the question. I then questioned the fact that we were doing another sleep study at all when Drs. Wood/Rutter had said one was not necessary without episode. She said she disagreed and felt it something that was needed to obtain information for discharge that Elias was on the right settings. She went on saying that this would be the most conservative approach for Elias. So I asked her with that plan in place what a target date for home would be. She was a smart ass and said, “Friday is the sleep study, you can go home on Saturday if you want.” First off that is no where near true. Elias going home on a vent requires mandatory nursing. There was no way it would be set up that fast. As I said she was being a smart-ass.  She said that she had spoken to Dr. Wood about this and he felt this was the best plan as well. I did not believe her, she was not convincing, it was a gut instinct that I have learned to trust very well, they are almost always right. I called her bluff and told her we needed a care conference ASAP to sort through all these options and get Wood/Rutter to weigh in to us with their thoughts. She said there was no need for that, they could gather all the information for us and get it ready for the discharge summary. BITCH! (Sorry!) How dare she tell me, a parent, that a care conference is not necessary. I told her I did not care what she COULD do, I was telling her what she WOULD do. Again being a smart-ass she said, well fine but it probably will not be able to be coordinated until next week and you could be home by then (I wish!) I told her that was fine it was easier to cancel than it is to put together. She stormed out. By the way the Care Conference is Tomorrow at 1 pm and not as far out as she hoped!

As upset, shocked, and angry as i was it was not until 8:45pm that it really hit me. That was when the Respiratory Therapist came in to place Elias on the home ventilator for the first time. I watched as Elias got upset about the circuit tubing that was placed on his trach tube. He kicked a little and got that mad face he gets while showing a little pouty lip. It broke my heart! This wasn’t the first time he had done this, some nights worse than others. He has done this every night after his windows off, but he was on a hospital ventilator then, it seemed temporary then or at least imaginable without. Since I could not update the blog I placed on my facebook status :

Words can not begin to describe the doubt, guilt, confusion, & anguish I am feeling as I just watched them put Elias on the home ventilator for the first time :(

That was when I became very upset by the doctors words earlier in the day, “it was becoming apparent that we were afraid to take Elias home without support.”   I began to doubt that maybe we had given off that impression. I want nothing more than to have my son on the safest long term solution, be it on or off. But if you cannot sell me on the clinical advantages that will make him safe how can I advocate for that. I was upset because I was unable to ask the questions in the right way to achieve the answers and understanding. I allowed myself to place blame on me for Elias being on this machine because of my inability to advocate properly through a sea of ever changing and unfounded plans. That is when I knew I had not failed, but the battle was not over. We needed All of his doctors to weigh in on this and discuss it. That was the only way we were going to be able to make a plan that works. This morning I asked where we stood on the care conference during rounds. In yet another unprofessional showing the attending very curt and snippy with an obvious scowl on her face said, “we are working on it.” I asked, “Who is we?” “My Doctors & Nurses” she snapped back. Katharine saw me begin to tremble as i could really feel my anger reaching the limit. With a very shaky voice I demanded, “ which one of these folks is coming to see me, when can I expect them “ She did not feel that was necessary until I said then how do they know who we need or want there. Again her snippet attitude snapped back answer, “well are there people we don’t know about.” Why was this woman putting up so much resistance to this care conference? Does she have something to hide or be ashamed? It doesn’t make sense. Why would she push my buttons like this when she knew I had already contacted the family relations division about our issues with the surgical team. I think that was a crystal clear message that we are not here to play around, but get the quality skilled care this hospital is known for. We did not move 600 miles to put up with this and I refuse to allow that activity and attitude to be acceptable! I just do not understand and at this point have serious doubts in her opinions. We will arrive at a decision on how to proceed with Elias through the dialogue with his other doctors. We are still expecting to bring him home on the vent, but with a much more definitive plan. Who knows though the great miracle may occur that these doctors can show us why Elias will thrive full-time without the vent, and that would be wonderful. I just find it difficult to believe that these doctors are going to feel safe about his airway with the lack of change without something in place to assist him when he needs it, to protect him! The difference is these doctors will give us sound reason why we should go the route we ultimately choose without the obscurity we have been getting and we will feel better about everything. Both the resident and Fellow agree with us that the plan has been all over and not well communicated. Ii told the discharge coordinator who was the one organizing the conference that if the attending was so opposed to this conference, she did not have to attend and that we would actually prefer that. We will let you know what comes of the care conference.

To end this on a positive note, Elias has been doing wonderful though all this turmoil. He has been having a blast actually. Leave it to Elias to find a way to have fun in a hospital. He has been really working well with sitting up, hit almost 5 minutes solid, but not consistent yet. The PT is very pleased with him and his work. He has also been all over the place in his bed. Rolling flipping and pivoting! He has been laughing a lot too and we are talking the hard belly laughs at various activities. It has been a joy to watch and almost a relief from all the attitude we have been getting. We were reading the Passy-Muir valve booklet over the weekend and figured out a theory on why Elias is doing so well on it. When Elias had his trach tube in that blind pouch all that time, he was actually breathing through his mouth and nose as well as his trach. It was something we never understood, well it is due to one way pressure. Elias had a natural passy-muir valve going all that time and his brain is telling him, I remember this, ahhh back to normal. Many of the respiratory therapist agree with that theory. Now if we can just ensure that will help his airway stay stable! I thank God for Elias’ awesome attitude and amazing spirit. We are so glad he is showing so much life after all of this. On the discharge front, it unfortunately seems like we are still potentially 3-4 weeks away :( Hopefully, that will change to become sooner.