Up at 2:30am just imagining the challenging journey we have ahead of us and wishing, praying for a cure. Ellie today saw the OT specialist and Eating/drinking speech specialist. Ellie improved in her eating and drinking but not enough to be taken off the IV fluids. I’m pretty sure we are here till at least Monday. OT came in today and we are trying all different ways to help Ellie Drink so I was sitting next to her in the bed and my Mom jumps up to help fill one of the drinking cups with a cover with water and hands it to Ellie. Ellie has weakness on her left arm/hand and she couldn’t hold the cup (hence the cup with a lid so we can get away from sippy cups and work on closing her mouth around a straw) as her wrist gave out, it felt like slow motion as the cup dumped in my lap. It shouldn’t have been a big deal if the lid was on but my Mom was in such a hurry to help she forgot to put the lid on tight. So about 16 oz of ice cold water dumped right in my lap. It was very funny as I was drenched and we tried to make a Joke out of it because Ellie felt so bad. Poor Ellie just knows what she should be able to do and yet she just can’t. Ellie’s vision has changed also she has been seeing double, I am praying this is just swelling going down and a temporary problem. Ellie has a lack of awareness with her left side right now. My heart is breaking for Ellie as we struggle through this. We keep being reminded that even though this is very rough, Surgery was the right option. I met privately with the Neuro Team and that discussion is for a later post but the one thing that was reiterated to me is how happy they are that we did surgery and it was the right decision. Dr. Dipatri said that even in the scan it was showing that her her Ventricles where pushed over and her brain was starting to fill up with fluid. The second scan after surgery shows it pushed back over and the pressure was relieved.
I really hate myself right now as I look at these kids who have had other surgeries on this floor and I am jealous. Why the Brain I ask all the time, its just not fair it’s a much harder battle then any other cancer. I hate myself for being jealous and mad because I know each family is going through their own personal battle and no kid should have cancer or have to be hospitalized for surgery. I find myself apologizing in my brain for even thinking this as I pass a kid in the hallway. Brain Cancer is such a complicated thing to go through, it controls everything and it pains me to see Ellie struggle. Doctors are thinking the facial weakness is temporary and therapy will get it moving from what they see from the scans but its going to take some therapy and wont happen over night. The only nice thing is that Ellie is now a teenager and understands what its going to take and so she is constantly doing her exercises to bring back her feeling. During her first surgeries I would have to push her to do therapy and she would cry. I’m living in a survival state at the moment and I know its only a matter of time before my MS gives out. Dave is spending the night tonight to help out. So on the bright side (but jokingly not so bright) the nurse came in for Ellie to swallow 6 pills at 11pm (which is a challenge in its self because she can’t feel if she is swallowing them) and we discussed trying to let Ellie sleep as much as possible tonight and hold off on some pain meds so we don’t have to wake her as much tonight. Now the not so bright side - Dave is here and I wanted to show him how we get woken up about every hour and how rough my nights have been. I wanted him to get the FULL experience. So I was talking to the nurse and she was explaining how we where going to try to let Ellie sleep and just come in for vitals and I looked at her and very seriously tell her “ok sounds good but can you come in and wake my husband up every hour for me? “this young nurse looked at me in shock and was like “ummm” I had to quickly tell her I was joking. We had a good laugh, she thought I was serious and how it was a strange request. I guess at least we can laugh through this as much as possible.
I will tell you Ellie is super proud that she is so loved when anyone walks in the room they express how much they love the cards and are shocked by how many cards there are. My sister, Ellie’s Aunt spent the night hanging cards up for us. I told her when we are discharged she needs to come take them all down to bring home. Just now one of Ellie’s machines was beeping and the nurse came in as I am writing this and she started to look around and said “I love this, this is amazing, wow” I know I sound like a broken record but Thank you, Thank You, Thank you... I actually am laying in my chair right now looking around at the cards and reading the ones I can from here. They have brought us such joy and some are really really really original, from a rabbit with a pancake on its head to a Pig unicorn, to Hitler Jokes. So amazing. Todays cards that where hung where from the River Valley School. I was so impressed how the kids really took their time and wrote uplifting notes to Ellie.
Today Ellie had a shower and I dried her hair and she seemed to handle the VERY CAREFUL hair brushing good. When she was younger she would cry in pain although that could be the fact that its numb on that side of the head but time will tell.
Today Ellie had a visit from Grandma, Papa, Aunt Kelli, & Grandpa Steve. I think this is the hardest thing for Ellie is the fact that her visitors are so limited. We have been trying to make up with that with as much facetime as we can. The phone calls really pep her up so much, right after her phone calls she is so drained and has to sleep but you would never know that by how excited and vocal she is on the phone calls. I give props to my Dad, Grandpa Steve as he has been our entertainment every day. From the moment he comes in to the moment he leaves he has us in stiches. Ellie’s eye roll is in full affect the entire time. Oh the parking stories and how he gets lost has all the nurses laughing and the party room for sure. Her OT therapist today said this had to be one of the most entertaining therapies she has ever done. That’s my Dad for you. Till tomorrow or wait I mean later today. Because it’s the weekend I probably wont have much of an update as all the therapists are not here on the weekend and they are on a limited staff. But my Dad is coming to visit today so I am sure we will get the Parking Chronicles Comedy again. Grandma and Papa are having a Pajama Party with Ellie tomorrow night so I can go home and try and get one good night sleep, so I am sure we will have stories about that.
It is now 4am and DD is going to be calling my name pretty soon. You know how the commercial goes “I live on Dunkin” That is so true while I have been in the hospital. But we have decided Ellie is going to live on Starbucks Frapachinos while we are here. My sister went out in the freezing cold to get her one and as doctors did there salivating at Ellie’s drink. Ellie did Eat a whole 6-inch subway Sub tonight and drank Starbucks she is determined to get out of her and get home.
BTW update on Dave spending the night, no worries Dave’s sleep has not been interrupted as he has slept through every time the machine beeps or/and someone comes in. lol
A mother with a battle ahead of her.