Katharine’s grandparents drove up from Florida yesterday for a quick visit. Elias was pretty tired and slept a good bit while they were at the hospital, but he managed to muster up enough energy for a few smiles and playtime. It was wonderful that they could come and spend some time with us and Elias. As I mentioned Elias was very tired yesterday. I think his stamina right now is very low. he tries very hard to push himself, but quickly realizes it is not a good idea. The goal is to keep him steady, make as few changes as possible and get to Wednesday with as little action as possible. We were having issues with a particular Respiratory Therapist over the weekend. She did not like the oxygen delivery set-up, the humidification system being used, nor did she like him being on oxygen. She kept coming in and trying to change things. Each time I would remind her that Dr Rutter said to leave everything alone, no changes until Wednesday. She still insisted on trying to wean Elias off the oxygen. After a long debate on Saturday about the humidification system she preferred and why we did not want it used when Katharine woke up yesterday morning she found that system in place. The RT had come in saw Mom was asleep and set it up anyway. Katharine simply removed it herself and placed the previous back. The RT never said a word about it not being on him still. Finally, the straw that broke the camels back was while Katharine’s grandparents were still visiting in the room. She came in and walked right over to the oxygen flow controls and started messing with it. I perked up and asked what she was doing. She mumbled something about weaning him the previous night and she was trying to lower it to where it was suppose to be.. I explained to her in a very irritable voice that first off if he was weaned overnight it was without our knowledge and I was pissed that no one informed me particularly when the doctor himself told me we would not be making any changes. She stumbled over a response and continued to do what she was doing. I asked her to get the resident on call to explain to my why they were going against Dr. Rutter’s orders. She immediately changed her tune and put it back. When night shift came in I inquired what the orders were for the oxygen. I was told by the nurse that they were told very clearly to leave it be. The night RT did explain how it is typical protocol to wean, but he was informed that we were not following protocol with Elias and he felt it was pretty clear. This is not the first time we have had difficulty with this particular RT. She comes across as one of these people who like to act as if they know way more than anyone else and are much more important than they actually are. We should be notified of anything and everything with Elias’ care. We should never be the ones to discover it. This RT in the past has placed Elias on oxygen, when he did not need it and now that he does need it she is trying to take it away. I will be addressing this during rounds this morning and possibly reporting her behavior to some sort of supervisor. It is just very irritating when they constantly tell us that we know our child best but yet when we give our opinion, backed up by logic none the less, we are shunned by this particular RT. If you don’t want to live up to the motto and principles of the hospital you work for, then GET OUT! Family centered care, meaning the parents are involved in decisions and change the outcome are the two principles here. This RT is trying to create the outcome and it is not positive. Sorry for the rant but I needed to get that off my chest. Elias is uncomfortable enough he does not need a bozo RT coming in and making it worse and potentially compromising the ability to do the surgery.
The plan for today is more waiting. We anticipate speaking again with the cardiac surgeon and signing consents. They also should be drawing blood today to prepare and ensure his counts are where they need to be. Genetics might be coming by today as well. They have been trying to catch us with little luck and it appears our scheduled clinic date will be missed due to the upcoming surgery. Elias is also finally getting some occupational and physical therapy services. They were both in over the weekend and are expecting to return today. So things should be somewhat busy, but relatively low key. Our luck is they will all come at the same time and the three ring circus begins!