Hospital 🏥 Day 3 Update

She has still not woken up, and she still does not gag when they suction her. Her respirations have increased as well as her work of breathing. They have her on 35% oxygen by mask at 8 liters.

They are doing an EEG and will begin monitoring her soon and will continue overnight to look for any changes during monitoring or changes from previous EEGs. They are trying to rule out blood clots in her brain and a stroke. Normally they would do a CT of the head with contrast to see more but contrast can be rough on the kidneys and they do not want to cause additional trauma to her kidney. She will have a MRI in the morning unless her symptoms (heart rate continues to drop) indicate a need for a CT tonight without contrast.

She is on a very small dose of heparin to prevent clots since she got a central (PICC) line yesterday.

Her eyes are equal and reactive, she has raised and moved both arms today and she does respond to pain, which are all good. She has not had any additional, visible seizures since Sunday when she had 3.

She has a lot of mucous and is getting breathing treatments every 4 hours as well as chest pt (a vest that shakes to loosen the secretions in her lungs).

They are continuing to treat the UTI and the infection of the kidney.

LB used a diagnosis code for the transfer that indicated patient preference which caused insurance to deny the transfer. AL has asked LB to recode as kidney related and send back to them, so we are still waiting to see about the transfer.

I am now trying to get access to her test results through the patient portal. My access as a proxy was removed due to what is called the mature minor doctrine. What is that? Well, “it is a legal principle that allows a minor to make their own healthcare decisions if they can demonstrate the maturity to understand the consequences of their choices. This doctrine applies to unemancipated minors and, depending on the state, typically requires the minor to be between 14 and 18 years old. While age is a factor, the primary consideration is whether the minor has the capacity for informed consent, regardless of age.” I lost access for LB and AL. I have gone through the process of requesting proxy access again as directed by the IT department that handles MyChart at LB. It didn’t make sense to me to request proxy access again since that is what I previously had but it was changed. Make it make sense! I keep up with Maci’s labs and I like to see them myself so now, instead of seeing myself I have to bug the nurse! If the child has to demonstrate the capacity for informed consent why not leave the dang stuff alone, allow the proxy to access and THEN ask the child if they prefer their parent to have limited access. I AM RESPONSIBLE FOR HER and you are limiting my ways to care and advocate for her. I mean geesh, let’s add some unnecessary stress to what I am already dealing with why don’t you?

Her hand that has the blood clot in the forearm was less swollen but now has swollen to larger than it was this morning in the time it took me to type this update. It had turned purple again this morning. They have been keeping warm compresses on it and it has started looking better. They are going to do another US on her arm and hand. You can feel a pulse in that arm too.

One of her antirejection medication levels is too high so we had to hold the med this morning and will check another level before her night dose is due.

Her sodium is decreasing at an acceptable rate so far but her potassium is low, they added potassium to her IV fluids last night and it gave her severe diarrhea. She had more fluid volume going OUT than what was going in and her potassium dropped another point. If potassium is too low, it can cause heart issues. They have given her 2 IV boluses to help replace the lost fluids but it can’t be too much too fast or it will cause her sodium to drop too rapidly. If sodium drops too rapidly, it can cause the brain to swell.

I am ready for my baby to be back to herself. She is breaking my heart.💔 Tomorrow is her 14th birthday. I would love for her to wake up and respond more tomorrow.

**Side Note Regarding The Photo** Nothing is wrong with her neck. The soft collar is helping to keep her mouth closed because she is a mouth breather. It keeps her mucous membranes in her mouth from drying out more and she breathes better.