Wednesday, April 3rd
it was a rough night for Ellie. Her arteries in her brain kept contracting and her blood pressure was spiking all night long. Something clogged the external tube around 2am so Neuro Surgery came in and flushed tube. She can lift her right arm today. Every little step forward is a step in the right direction. They got her a brace for her right foot. This will help with positioning. She is really depressed. She takes a long time to answer back when you talk to her but she try’s. We are very happy she can talk, just very slow processing and not many words. It’s going to be long journey. They cannot put shunt back in until they figure out what’s going on. She is able to eat today, we just have to feed her and it’s very slow. She did get a visit from therapy dog but we couldn’t get a smile out of her. That’s when you know she doesn’t feel well when she can’t even smile for a dog. I think she is really missing her dogs as I am also. Physical therapy came and sat her up but she could not sit on her own. She has lost all core strength and its going to take allot of therapy to get that back.
Can’t sleep, wondering what today will bring, thinking of my boy back home that just wants his dad and I, hoping that Ellie’s white blood cell count comes down so she can have surgery today to put shunt back in, using this time to pray to god to heal Ellie so we can make our way back home and begin fighting this tumor with Radiation, Thinking about how we are going to have to do some changes to our house to accommodate Ellies special needs from the stroke, thinking how blessed we are to have the support of our family, friends, and community standing by us during this fight, thinking that everyday she has this open wound with tube is another day she can catch an infection, thinking how lucky I am to have both my mom and Dave here this week. Just thinking I wish I could hush my brain for a bit. We said good bye to one of our favorite nurses today in hopes that we will not be in ICU next time she works next week. She did say she will sneak upstairs to visit and see Ellie next week. As much as I love these Neuro ICU nurses I’m hoping we make it back upstairs next week.
Ming our awesome nurse is #Elliestrong
Thursday, April 4th
Surgery is a go this morning. Ellie will be in ICU for at least two days and then here for a week at least. Her white blood cells are high but they think it’s the steroids but they are taking extra precautions with not allowing extra visitors besides myself, Dave, and my mom to keep infection away. Ellie was up most of the night and just had extreme pain. We are working on getting something for her pain medication right now but unfortunately she needs to stick to Tylonol so it doesn’t mask other symptoms. Dave hugged her and was able to calm her down a little. As the pain gets higher the more she has a hard tiem breathing.
Fast forward to 12:00pm/Noon
They took Ellie into surgery about 40 minutes ago. It should only be a 2 to 3 hour surgery. Praying for successful surgery. Poor thing was so wrestles before surgery because she was in so much pain. They had to give her Morphine. This poor girl has so much going on. She was whipping her head from pain so much she has created these knots in her hair. It’s going to be a long process to get these knots out. On a positive note if anyone wants dread locks Ellie can show you the fastest way to get them. She has it down by now. Maybe she caught the Jamaica bug when she was there.
Ellie is out of surgery an she is looking amazing. Still no improvement on moving right side of body. She is really groggy, everything makes me nervous. Hoping that tomorrow we see some improvement. Said goodbye to nurse Katherine from Michigan as she is not working when we are expected to be moved out of ICU in the next few days and she won’t be working before that. She is #EllieStrong
Friday April 5th
Last night Ellie was up most of the night. I think her sleep schedule is all messed up.
This morning my mom had to get on a plane to head home. I was so sad to see her go. She giggled and said “I’m only going for two days I’ll be back Sunday.” She has been amazing through all of this and so much help. Ellie can’t sit in a chair yet or feed herself 100% yet so we need all hands on deck here. I am so blessed to have an amazing husband and mom that are both so much help.
I think its really hitting Ellie today that she is going to struggle daily to get herself somewhat back to normal. We have had doctors, specialists, and non stop tests since Ellie woke up this morning.
Speech therapy came in and did some testing and I think at that point Ellie realized exactly what she can and cannot do. At the end of testing the therapist had Ellie draw a photo of a boy she had seen earlier. Ellie started to get extremely agitated as she tried to draw the picture. Ellie has a passion for Art and for Music and its so frustrating to her that it comes to hard to her right now. It was obvious she was finished with the therapist at this point. She would not lay still and turned away and stopped to draw. She would not look at the therapist. At this point the Speech therapist decided that she was done for the day and would be back.
Saturday, April 6th
This morning was a big step in Ellie’s progress. She started to use her right arm to eat with little to no help. This was so incredibly nice to see considering that yesterday I did not notice any improvements and was feeling down.
We really need to get Ellie sitting up more so the doctors suggested putting her in a wheel chair
It took 3 people to get Ellie in a wheel chair but we did it. I have video but for my eyes only as she would kill me if I showed anyone. We took her for a walk around the ICU to give her a break from hospital bed for a bit. It takes allot to get her to walk around even for 5 minutes. They have to get Monitors all hooked up to travel around the floor even though its really not far from her room they need to be prepared if she heads down the wrong path again. She is now back in bed but her heart rate is spiking and it makes me wonder if we don’t have the shunt at the right levels. We turned shunt from .5 to 1.5 this afternoon basically higher the number less fluid drains. It is such a scary thing to have a shunt. Maybe its because I am new to this and hopefully I will become more immune to the idea. This is so heart breaking to watch Ellie struggle so much. They are keeping Ellie in ICU because they can’t figure out why her vessels keep contracting and it’s Concerning and they need to monitor her closely. I know god has a plan but wish he would fill me in on his plan because as of now I’m thinking we got the wrong plan. Ellie did FaceTime with some friends yesterday and it was first time I saw her smile all day. At same time it was heart breaking because she couldn’t come up with anything to talk about because her brain is still not functioning very well.
I spent about 3 hours today combing through Ellie’s hair trying to get dreadlocks out. I think I did a pretty good job if you look at the photos below. Although I ended up having to cut off a big chunk of her hair but it was underneath so you can’t notice. It was defiantly a labor of love. Everyone that saw it said I would probably have to cut it all off. But I wasn’t willing to do that to Ellie.
Sunday, April 7th
It was a big day. We started off by saying goodbye to Dad bright and early as he had to get back home and back to work. Also Jake needs him there too, as much as he is being taken care of he misses us very much. I know it was so difficult for Dave to say goodbye to us as he wants to be here helping out as much as he can. Dave and Ellie have a special bond and Ellie was sad to see him go. After Dave left our nurse Ashley had Ellie up in a chair. It was slightly difficult as I could not leave her side because she doesn’t have any core strength to hold her self up and her head would just fall. Ellie sat in a chair for about 3 hours. It was very challenging for her but she did it. She kept on asking if she could go back to bed. At one point I had to ask a nurse to sit with her so I could use the bathroom. As I went to the bathroom within those two minutes the other nurse told Ellie ok we can get back in bed a few minutes. I rushed out of the bathroom to let her know that wasn’t happening. Mean old mom again, or should I say the one that is pushing her because we need to get better. We don’t have an option. Our next goal was to get Ellie outside. There was discussion among the many doctors if Ellie would be released to go outside or not. Neuro Surgeon won and we got to go outside. My mom arrived just in time to take Ellie outside for the first time in 12 days. In the beginning Ellie could not hold her head up but by the end of our 10-minute stroll she was holding her head up and smiling and enjoying the nice Miami Weather. I guess if you have to be stuck somewhere at least the weather is nice here.
April 8th, Monday
Today has been a very busy day for us. Ellie began her day with a 6am MRI. The MRI was to check on how the shunt is doing so far. They think things look stable. Its concerning to me though because things also looked stable when the shunt malfunctioned. Ellie has been having neck and head pains all day today but she has been a trooper through it all. We are waiting for the Neuro Surgical team to make there rounds to discuss changing settings on her shunt to see if that helps with the pain. It unfortunately is a balancing act and there is no exact science to this whole shunt thing. 60% of Shunts malfunction. I have met several people in the ICU including a family that has had 12 Shunt Malfunctions and then there are people that live their whole lives with a shunt and never have a problem.
Today Ellie has had Occupational therapy, Physical therapy, and Speech therapy. PT got Ellie up and into a wheel chair that has head support. It was very exciting to us as It helped her feel more comfortable while working her core muscles. It was even more exciting that she stood up and pivoted her foot towards the chair. It took a few people to hold her but every little step is in the right direction. Its been a very busy day with all the doctors. Good news of the day is Ellie has been released from infectious disease. That’s one less doctor and one less medication she has to be on. Ellie had a feeding and swallowing study today and they determined that Ellie cannot drink regular liquids. She has lost her gag reflex and if the water goes down the wrong tube. If water goes down the wrong tube, then that can cause her to get Pneumonia.
We have to thicken her water or any drink she is drinking. They said it’s possible this could be temporary that it might be due to the loss of strength in her neck muscles.
Fast forward to late afternoon:
We had a visit from Pretzel a therapy dog. We also had a special visitor from another therapy dog Apollo. We gave Apollo a #Elliestrong bracelet and he so graciously took a photo with his legs crossed. It was so nice to see another therapy dog but at same time disappointing to see how down in the dumps Ellie is. She smiled a little but that was just for a photo. At one point she was not interested in the dog. Ellie had a sponge bath and her hair got washed today. Also the Neuro surgical team came around about 4pm and we are going to move the shunt setting so it drains a little more liquid to see if that helps with Ellie’s pain. They are going to watch her over night and try to get her off a few monitors and then hopefully release her to a regular Neurological floor tomorrow morning. That’s just one more step closer to getting home. I truly am enjoying the Neuro Surgeon team here but I miss ours back home. The Neuro Surgeon joked around yesterday about “no patients want my stickers, they always want the therapy dogs but not mine” I thought he was completely joking around and then today he took out his very own sticker that the nurses made him. I loved it.
I am constantly meeting with doctors, social workers, child life specialists, nurses, family services. As much as you think you have time just sitting around I often wonder where the time has gone in the day. Today I was able to take a ride to Wendy’s and pickup lunch. Its always nice to get a change of scenery. A few things I have learned about Miami since I have been here. You must be able to speak Spanish if you live here. English feels like the second language down here. Every where you go they speak Spanish to you and expect you to speak Spanish right back to them. Also traffic is horrible here. There is never enough time on the left turn arrow. If you can avoid left hand turns, then you get places much faster or you just go in circles. But the weather makes up for all of that. Ellie had a sponge bath and her hair got washed today. That was an exciting development as I’m sure she is feeling more refreshed. She just doesn’t really talk very much and seems really out of it. I pray everyday for some improvements and for my Ellie to be brought back to me. The spot she had her stroke in affects her right arm and right leg. Some people it affects your personality also. I am praying Ellie is not the part of some people. We did get her to sing to the Occupational therapist today and that was amazing to hear. I almost broke down in tears as it’s the first time I have heard her sing in weeks. It was a glimmer of the Ellie I know. Ellie is now resting comfortably.
Tuesday April 9th, 2019
Last night Ellie was up the entire night very restless. The doctors tried Melatonin, Benadryl, and even volume. Its so hard to watch her struggle.
I feel like we are taking one step forward and then two steps back. Ellie had a good day yesterday. But then was up all last night. She got melatonin, Benadryl,and Volume nothing worked she was thrashing her body around all night. Pulling off all the monitor wires. Very restless night for her. I’m drained. Ellie's sodium levels are really low and they cannot explain why her Sodium levels cannot get under control. They took down the IV fluids and we are doing our best to get Ellie to drink. We have to be careful because if she gets dehydrated she could have another stroke. When you have contracting vessels dehydration causes more issues. It is Day 11 in Miami and still in ICU, I am feeling down. We had a special surprise scheduled for her today as my sister Ellie’s aunt flew in to visit with Ellie. She could only come for less then 24 hours but it was so worth seeing Ellie’s smile when she came in. Grandma and Kelli worked very hard on therapy with Ellie including kicking.
Ellie still has no movement on right leg. But they sure did get that left leg working out. She is working hard every day and we are praying that with every new day brings brings new improvements but poor girl needs sleep and strength. Ellie saw three therapy dogs today and also worked hard for physical and occupational therapy. Since Aunt Kelli was here I get to go spend the night in a Hotel
I went to hotel while mom and Kelli stayed with Ellie. I slept really well but now I’m so tired and down. I miss home so much and just want to get back home. I don’t feel like I’m ever going to get home. We are Day 12 in ICU and Ellie is not stable enough to move to a floor. Ellie needs to be stable for 24 hours before they can move her to another floor. We said good bye to my sister Kelli Shoup and that was so hard because I was able to sit back and watch my sister and mom take care of Ellie for a bit. My MS is not having any of this. It’s been a busy morning with ultra sound of Ellie's bladder, Neuro Surgery Rounds, Neurology Rounds, ICU Doctor Rounds, physical therapy and occupational therapy. Ellie is still unable to sleep at night. They put her on a medication to relax her muscles although she was relaxed last night she didn’t sleep much so my mom and sister where up with her. Ellie forgets that she cannot stand and tries to stand on her own at night. I don’t know how much more this poor girl has to go through. It is just exhausting just to think of Managing Ellie's care at home with all of her current special needs. Breakfast of champions, BBQ chips (to help with Ellie's sodium), chocolate pudding boost, & cinnamon frapachino. Only Ellie love her.
The Social worker came in and told us the plan was to get our insurance to approve us to be medi-vacced and this should be happening in the morning. This was the best news I have gotten since I have been here. Even though they are just transferring her to another hospital it at least is close to my support team and back in Chicago with her doctors that are familiar with her.
A mother with a battle ahead of her.