It's been a few days since I've updated Marlee's Blog. But here is a recap from this weekend:
Friday (04/05/13) We had a family conference with most of the doctors that are on Marlee's case at Kaiser. The doctors went around and gave their course, plans, and goals in caring for Marlee. And it gave us a time to ask all of our questions and get anwers.
Marlee has AUTOIMMUNE ENCEPHALITIS. It is a broad term and there are many specific types of autoimmune encephalitis. Basically, it is an inflammation of the brain because it is being attacked by the body's immune system. Symptoms may include altered level of consciousness, seizures, hallucinations, inability to speak or control movements. Treatment of autoimmune encephalitis are immunosupressant therapy, steroids, and intravenous immunoglobulin (IVIG). The prognosis and recovery of patients with autoimmune encephalitis varies from a full recovery to those being in a vegetative state. But it is usually always a very slow and long process of recovery from months to years.
Marlee was ruled out for any bacterial, viral, or neuoblastomas (cancers/tumors) throughout her hospital stays. And, they had already started treatments for her encephalitis. She is still unable to talk, walk, or eat. At the end of last week, she was also having alot of issues with her tube feedings (Marlee is being fed through a tube in her nose that goes to her stomach because of her inability to swallow/eat). The doctors were trying to increase her feedings and/or increase her calories to put some more weight on Marlee to get stronger. But everytime they changed or increased her feedings, she wasn't able to tolerate it and would end up vomiting. Because Marlee has been affected neurologically, and keeping in mind that the brain controls all the other systems in the body, we were finding that she was also having problems with her bowels. She was getting backed up and wasn't pooping. By Friday, she looked uncomfortable and in a lot of pain. X-rays confirmed that she had (for lack of better words) a big poop in her intestines that wasn't moving. They stopped her feedings, gave her suppositories, and used GoLytely to flush her system out. So, a huge goal for the doctors is to figure out her feedings so she will be able to tolerate it and not throw up continuously. And, also, monitor her GI issues to ensure that they are moving properly and regularly.
Friday, we also noticed her facial twitches/movements came back . The doctors ordered to increase her dose of Clonazepam to help with this. They need to get these extra movements/twitches under contol because it burns up alot of energy and they are already having issues with Marlee's feedings/nutrition.
During the family conference with the doctors, we also talked about the plan for Marlee. We think that she most likely will have to stay in the hospital for her next 2 weekly doses of Rituximab (immunosupressant therapy). And, they definitely need to figure out the right regimen for her feedings to help her maintain a good weight. We also discussed the need for an inpatient pediatric rehab facility when Marlee is discharged. It is going to be a long and very slow process. Marlee has a long road ahead. But we know she has a huge support group and many prayers for her strength, health, and recovery.
On the positive side of things, she started crying more. Which doesn't sound like a "positive", but at least she is making noise and is having some response. She has been holding her head up more and more. She is sitting up also and tracking. All of these little things we are so grateful for her steps in recovery.
We appreciate all the love and support that is STILL pouring in from so many. And so many that don't even know Marlee! All of the messages and the response to her story has touched us deeply. We are incredibly thankful for all the prayers, care, and conern for Marlee (and for us). Please continue to share her blog and donation website. Every little thing goes a long way!
Monster in Marlee Donation & Help Website
Per Christina & Bernard's request, please check in with the Blog for updates. Although they appreciate all the messages and those requesting/wanting to visit, please respect their privacy and allow them time to care for Marlee in the hospital. Also, with her being on immusuppresant therapy, we need to make sure that Marlee doesn't get exposed to anything to complicate or further lengthen her stay at the hospital. Thank you for your understanding and patience. And, we really are so blessed with so many friends, family, and even strangers that are praying for Marlee!
We also want to thank everyone that is sending suggestions for help or giving us contact numbers for other doctors/hospitals. We believe that the doctors have finally figured out what is going on with Marlee and are content/satisfied for the most part with the plan of treatment for her. But we are amazed at how many people have take the time and sacrificed to making sure we are getting the proper help and care for Marlee and this Monster. We are so grateful for all of you!!!
Pictures from the weekend: ENJOY!!
Marlee & Mommy <3
Marlee working with OT in the standing position
It is important to keep working with her and REtraining her to do normal activities again.
Marlee working with OT on brushing her teeth.
Mat time with OT
Sitting up with Me (Aunty Candice)
Marlee playing with all of us
Christina, Bernard & their Baby Girls (Marlee & Jayden)
"I'm a Rockstar!! Thank you for all your prayers!!"
Still getting Respiratory Treatments twice a day to "shake" her up and get any "junk" clearedf from her lungs.
My cousin had encephalitis a few years ago when she was 5. It was an extremely scary time for everyone. Seeing a bright, active little girl turn into a child who couldn't walk or talk was heartbreaking. But, she did get better. Three years later now she's back to her normal self. Her recovery was difficult, but it was a recovery. I look forward to reading about Marlee's progress as she beats this. Marlee and all of her family are in my thoughts.
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