Let’s start off with the most exciting news we have had all week. We are home and we don’t have to go back to Children’s Hospital Downtown till Thursday. We get a Lazy Wednesday. It was a long day at the hospital. Ellie had an Ophthalmology appointment to look at her eye. Ellie has an Ulcer in her eye and it has lost the protective shield so we now have to tape her eye shut all the time and hope that she regains feeling in her right side and is able to close her eye. She cannot blink adequately in order to create the protection she need for her eye. She has a week to get some function back into her face in order to not have surgery. We met with the surgeon and he is pretty adamant that she cannot go more than a week without causing permanent eye damage. The plan would be to sew a portion of her eye lids together. This could be permanent or temporary just depends if she can regain full function. Just another hurdle to jump. By the time we where done with the Ophthalmology it was almost noon and we had a special visitor from Kasey. Kasey is a great friend of the family but she was Ellie’s childhood babysitter and Ellie loves her to death. It was such a nice surprise. It took sometime to get released. We found out that Ellie was on Brain Tumor Boards discussion list for today. I had to get ahold of Dr. Goldman to let him know that we have a vacation at the end of march that’s been planned for over 6 months and it was not flexible. Because we don’t know what treatment they are planning on proceeding with at this point but wanted to make sure he knew we would have to work around that week. Before we left I got discharge paperwork and the instructions where exhausting. We already have 3 more appointments scheduled for this week and need to make 3 more for the week. I did get a call from ENT and I was not happy with there scheduler. They have Ellie on steroids to try and bring the inflammation down. She is on full dosage for a week until the ENT signs off on starting to wean her. Unfortunately, the scheduler kept on giving me the run around that the next appointment is on the 11th. I kept explaining to her that we need to see the doctor next week because Ellie cannot start to go off steroids until we see them and that is way too long being on steroids. Needless to say I was able to leave a message with the ENT’s Nurse to try and over ride the scheduler. It is only day one dealing with scheduling and its exhausting. It’s amazing how much more work we are going to have to put in this time. I guess I was hopeful that it would be as easy as her very last brain surgery. Not that it was easy but this is probably the hardest recovery we have had thus far. Its amazing how you take such little things for granted until something major happens to you in your life.
We where able to leave the hospital around 4pm and I was so happy to be busting out. We swung by Walgreens on way home grab some scripts for Ellie. Ellie was exhausted in the car. They dilated her eyes so the light was really bugging her, hence the Hollywood sunglasses. I am hoping to get in home services from the school starting on Monday but not sure how long it will take to get that setup seeing that the schools are closed tomorrow and Thursday. I have spoken with the school prior to the surgery and also the Hospital school liaison. I can’t imagine how much work we already have to make up. Everyone keeps reminding me that school doesn’t matter but its in the back of my head. Also Ellie is really missing being with her friends but on the same not she is very self conscious by her face not being fully functioning.
As you can see she was super excited to get this UGG Robe from the Liz Tomala and family but insisted on covering half of her face.
The poor thing has no idea what is ahead and how this is just the tip of the iceberg. I will say she has been handling all of this like a trooper for the most part. She is definitely handling it better then I would of at her age. She amazes me every day. She has had so much spunk in the hospital making all the nurses laugh. We keep on saying she has been hanging out with Grandpa Steve too much this week.
We had a special visit at home from Ellie’s cousins. Ellie just loves her cousins so much and was so upset that they could not come visit her. Also the dogs where extremely happy that Ellie was home. Ellie spoils them and I’m pretty sure they lost 10lbs this week without all the treats she gives them. Ellie was just as if not more happy to see her dogs.
Well I am going to bed and I am going to have the best night sleep. I think Mother Nature gave the kids the day off school so that I could sleep in tomorrow. Thank you to everyone for all the love, support, and gifts. Ellie did not have the energy to go through all the kind gifts them she just was able to open one and then she was pooped. I might have to add onto the house. Also thank you Tracy Schwartz setting it up and everyone that decorated our door with hearts and words of support. It was so nice to come home to a decorated door.
A mother with a battle ahead of her.