I Have Issues....

I have "Issues"... and here is one of them...I have high expectations for the doctors and other caregivers in our kid's lives. I expect them to not only provide highly competent care but I also expect them to be compassionate and respectful. I expect them to listen to my questions and not talk to me as if I am wasting their time. If the truth be told, I want them to go that one step further...to take a minute to find the spark that makes each child different from the child next door. I don't want them to be treated as patients, I want them to be treated as unique and special...that can be a tall order for doctors that have countless critical patients with complex needs.

Her primary pulmonologist came by to see her..he has been her doc since she was a baby. With all congenital anomalies that Maisy presented with at birth, he has spent lot of time on her case... he obviously had plenty of time today because he has been sitting out of her room small talking with the nurses for 2 hours. He didn't talk to her or me when he came in to listen to her lungs and apparently thought my questions were dumb..
This doc:
Competent--yep
Compassionate--?
Respectful?
Maybe it is time for a new primary pulmonologist...or maybe it's just day 5 at the hospital and I my tolerance level is wearing thin.. I want these docs to take an interest in the whole child...not just their lungs, their heart, or their intestines.

For the most part, that is the type of care we find here at Children's. The intensivist (Dr. Hahn) in the PICU was genuinely excited to see her doing so well. He even told the nurses to call her "Maisy Martindale" instead of her birth name and was thrilled to see that she would soon be adopted by us.
That is the way to get to a mother's heart.
Love my child...is that too much to ask?

Maisy Update....Saturday Morning.

"We are on "weekend time" at the hospital. Doctors don't do rounds until noon and things just move at a more relaxed time frame...Maisy woke up happy and smiley this morning...until she had to poop..she is miserable whenever she tries to go..we are trying suppositories and she is moving some things along bit it is tough on her. Between those times of discomfort, she is calm, happy and pretty tired. She does have pseudomonis in her lungs and is requiring some oxygen through her vent. Her lungs sounded imporved to me this morning--still coarse lung sounds but they were clear intermittently.Maisy is now in the step down unit--3rd floor at the hospital. This is the place you want to be at the hospital. Nurses have only two patients, parents can sleep in the room and the TV actually has volume control!

So, we don't have much for updates until the doctor comes in...she does not have any bowel sounds and so we won't start feeding yet (she is getting TPN feeds through IV.) The goal is to get her back on her home feeding schedule before she can get out of here..and they will start slowly with feeds. I am thankful that they are giving her tummy and intestines time to heal before they push feedings.

My access to the internet is limited again and so Dorothy will post updates for me..."