Thursday, April 11
Today has been a day full of drama from the moment we woke up. I woke up super excited thinking that today was the day that Ellie was going to be Medi Vacced back to Chicago. I felt rejuvenated. My Mom and I started to packing up the room. Everyone that came in knew the plan was to get Medi-vacced today. As we packed the room I realized we had gotten extremely comfortable here in the ICU. There was allot of packing to do. Then the Social Worker came in to speak to us. She said I have good news and bad news. “Good news it that Lurie Children’s has a room for you and is waiting for you. Also our Med-Vac team and Lurie Children’s are waiting to get you out of here. The bad news is that the Med-Vac has been denied by your insurance.” She then informed me that we needed to make an emergency appeal with the 399 Local for approval for them to get Ellie home. They cannot treat her tumor here with the Radiation because Pro-ton beam is not available here in Miami. Also they said she needs to be in a full time rehabilitation center eventually so they want to get her back home so they can work on treating her all around. I felt immediately deflated. During all this commotion we had a Pastor visit to say a prayer, we also had the doctors doing rounds. I immediately got on the phone to the Union and requested an emergency appeal. I felt extremely overwhelmed. The social worker said that the medi vac-team wanted to get out before the storm was suppose to hit Chicago so they could land. So we sit and wait for word on how this is going to go. In the mean time we had Ellie’s therapist come in and work with her. Ellie was very lethargic today and just not herself. At one point she was not making sense. She kept on talking about the Oregon trail and I was asking her who I was and the simple questions and she just kept talking about the Oregon Trail. I called Neuro Surgery Nurse Practitioner and the ICU Doctor to discuss this issue. First the ICU doctor came in and spoke to us for a bit but said he needs to defer to the Neuro Surgery as its their specialty. When the Nurse Practitioner came in she said that it could be all the new medication Ellie is on. They are constantly changing doses and medications as they try to figure out what is going on and how to get everything under control. About two minutes after she left the room Ellie said she needed to use the bathroom. My Mom and I started to get her up to use the Commod with the nurse and Ellie’s head tilted back and stiffened along with her arms and body. Her eyes rolled back and she would not respond. The nurse called for the other nurse and Neuro Surgery Nurse practitioner to come in. Then they pulled the code button. My mom and I where hysterical and so nervous we stepped back and just watched then nurses and doctors take over. This lasted about a minute but once again felt like an eternity. It presented as a Seizure but half of the team said it looked like something called posturing. I guess Posturing presents as a seizure but it happens when there is too much pressure in the brain. When Ellie came too my mom pulled herself together but I was still a mess so my mom told me to go down and get something to drink from the family room and pull myself together. They sent Ellie for MRI and determined that her ventricles had enlarged and her brain was once again filling up with fluid. They dropped her shunt number down so it would drain more fluid and they tapped into the Shunt to release some of the pressure. Immediately Ellie seemed more awake. They did an ultra sound to see if there are any kinks or problems in the line, they also checked the shunt in her head. They did not see any issues in the shunt or the line. At this point it was about 10:30pm. The Neuro Surgeon resident told us to keep an eye on her throughout the night and they will check her in the morning. With that being said I am on the first shift for the night and decided to try and catchup on some blogging as I feel way behind and everyday I get more behind.
The Drama continues today.
So last night I stayed up till 3:40am and then my mom took over and took morning shift. It has been a long exhausting day. The night was uneventful with just the normal with Ellie restless and up most of the night. Today was a crazy emotional roller coaster day. I’m not sure how much more my emotions can take at this point. Ellie woke up this morning very tired and in allot of neck pain. The physical therapist came in to work with her and when she sat Ellie up in bed Ellie started to have a seizure. They pressed the code button and there was a rush of doctors and nurses in the room. Ellie did not respond for about a minute or so. Right after this happened they put her on a EKG which was another disagreement among the doctors as some doctors wanted Ellie to go get the Isatop shunt study immediately and others wanted to get EKG leads on so they can try and catch a seizure. The Isatop shunt study is where they put a solution in her shunt and watch it through a machine as it goes through the shunt to make sure the shunt is working accurate. After going back and forth because the machine for the study wasn’t available they put leads on her. They then took her for the Isatop shunt study. The Surgeon, nurse practitioner, and several nurses came with us for the study. They rushed her down as quickly as possible. So as they did the study they found that the flow of the shunt was good and no issues. So then we went back up stairs they wanted Ellie to lay flat with no movement because they where thinking that Ellie’s brain is being deprived of blood and oxygen every time she makes a sudden movements sitting up and or laying down. Neuro Surgery felt it was not a problem with the shunt. They decided from here that they would up the blood flow to Ellie’s brain by raising her blood pressure. The nurse came in and we changed Ellie and she was laying flat the entire time. She was all clean along with the sheets and the nurse walked out of the room and my mom stepped out. I noticed she was having another seizure. I ran out grabbed a nurse and they called the code again and once again the room was filled with nurses and doctors. This time Ellie seizure lasted for 3 minutes and they where able to catch it on the EKG and determined they felt it was a seizure deep in the brain. They put in an artillery line to monitor her blood pressure internally. Unfortunately, then again a few hours again Ellie started presenting like a seizure but this time it was something they call posturing. Posturing happens when there is too much pressure in the brain. Once again the code button was pushed and the room was flooded with medical staff. Unfortunately, Ellie did not come out of this and was unresponsive. It was extremely scary as they tried so hard to get her awake for sometime and no response. The Neuro Surgery team tapped her shunt and drained some fluid to try and wake her up. Unfortunately, it didn’t work so well. So they rushed her into emergency surgery but they actually made her ICU room into a surgical procedure room to do it. They wanted to get this done immediately so moving Ellie would take some time. It was easier and faster to do the procedure in the ICU room. The plan was to remove the tubing that is flowing from the brain down to her abdominal and keep it external and drain that way. My mom and I waited anxiously for Ellie to come out of surgery in the ICU Family Room. The doctor spoke with us and explained that this way they will be able to monitor the flow of fluid from the brain. So the procedure was done and the flow was not very much so the nurse had to manually pump the shunt valve with her thumb every hour. So basically imagine taking your hand and firmly pressing on your side of your head every hour so that liquid would come out. Then the Neuro Surgeon tried tapping the shunt again to relieve some pressure of the fluid for the night so they could do surgery first thing in the morning. When she went into tap the shunt she could not get any fluid out and at that point they decided to take her to the OR for emergency surgery immediately. The plan was to remove the shunt completely and put an external drain in Ellie's head. So basically back to square one we go again. It feels like ground hog day around here. So we waited and waited Ellie was finally out of surgery about 1:40am and we got word everything went well. They did an MRI to double check she didn’t end up having a stroke. We where thrilled to find out that Ellie had not have another stroke. The doctor said hopefully this will do the trick and they where hopeful we would see improvement tomorrow. At this point my mom and I where physically and mentally drained. We got back to the room and had to wait outside while they did some more tests. Once we got to bed I think it was 3am we slept so well even through all the beeping and lights and nurses in the room all night.
I was so thrilled to see Ellie was able to open her eyes this morning. It has been a very uneventful day, which is perfect. Ellie has been resting most of the day. Dave flew in this morning thanks to a very generous person who booked a flight with there frequent flyer miles. We didn’t think Dave was going to be able to come but when Ellie took a turn for the worse we made a descion that it was best he was here. And when Dave came in Ellie said “Where have you been” It was very cute. She sure does love her Daddy. I fell rejuvenated having Dave here too. Best part was my mom and I got to go to a Hotel last night and get a good night sleep. With three of us here we can take turns at the Hotel. So we rested really well last night. Dave said Ellie was up from 1am on. She is very restless and cannot stay still. But I would rather her be restless than unresponsive.
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Sunday, April 14, 2019
Today is Day 15 at Nicklaus Children’s Hospital in Miami ICU. Today is a day of relaxation. I cannot thank everyone enough for stepping up and helping us. Ellie is resting peacefully but awake. We have a CNA/massage therapist that has been massaging Ellie all day. We did see a little movement in Ellie's right leg and that gave us a huge boost of happiness today. It was incredible the excitement and Joy that came from everyone standing round during rounds. It was a glimpse of hope that we so needed. Ellie had a Cats can today and it showed that her ventricles are still large but the swelling in the brain has gone down. This roller coaster has been way too much. They are doing an ultra sound on her stomach to see if there is issues because there is now blood in her urine. Ellie also is able to eat today. Unfortunately, Ellie's hearing loss has increased and is now in both ears. I’m praying this is temporary. It is extremely difficult communicating with her. We use a white board and she responds that way. At one point the doctors where doing there rounds and the doctor kept on saying “Ellie can you hear me” he got louder and louder each time. Ellie then responded “It does say I am hard of hearing in my chart doesn’t it” All the residents giggled under there breathe. Ellie has pain in her neck and stomach. Ellie is such a trooper and doesn’t complain we have to ask her when she is grabbing her neck. I wish I was half as strong as her. I cannot thank the generosity of people who have stepped up to volunteer miles for us to go back and forth for the generous person that paid for our hotel for the week for us. We have been so blessed with so much generosity these past months.
Monday April 15th, 2019
This morning the amazing Nurse Practitioner spent 45 minutes on Ellie's bandages and braiding Ellie's Hair. It made Ellie smile. Unfortunately, they had to shave the other side of the head for her last surgery. Ellie has no clue she is missing half a head of hair yet. Poor thing. Ellie is not sleeping at night and very agitated. Then during the day, she is so tired but can’t get comfortable. Doctor said next surgery will be Thursday at the earliest. Dave has to get back to work next week so I’m hoping it ends up being this week. They won’t do surgery until Ellie is stable and eating. They are also concerned with her protein content in her brain that keeps clogging the shunt. This happens with brain trauma and surgery. And Ellie has had nothing but brain trauma. Every time Ellie changes positions at all the nurse has to do an entire setup with her external drain to make sure she is not over or under draining. They use a level and move the bag up and down. It is a very important process and makes my stomach turn every time she moves. If she is over draining that can cause a brain bleed, under draining would put us back at square one. Ellie is constipated and cannot get out of bed or sit up. She is very frustrated as she still cannot hear and communication is frustrating. Ellie has malnutrition and is being put on a feeding tube because she isn’t really eating. She has a nurse, one on one CA and a student nurse. On rounds this morning I was exhausted listening to all Ellie's issues and medication she is on. I’m feeling very defeated and my MS is working against me in overtime as I am physically and mentally drained. We are at day 17 we can’t even work on approval from our Travel insurance to get Ellie medi vacced until she is stable which cannot happen till after her next shunt surgery. We kind of are in a holding pattern. Some very exciting and positive things to think about. We now have a hotel till Saturday to decompress thanks to a very generous friend of my aunts. Some more exciting news, my sister is flying in with Jake on Wednesday so I can see him. I’m going to spend Thursday with Jake all day while my mom and sister are with Ellie. I can’t wait to see him. Poor Jake needs some attention and Mommy time.
Fast forward to later in the day:
Ellie had a hearing test today and they are unsure why Ellie has lost her hearing. They need to do more advanced testing but Ellie cannot be moved with external drain so they cannot take her down to Audiology to do more extensive testing. Right now the plan is to continue to get her stable enough to fly home. Once she is back at Lurie Children’s to follow up with Audiology and ENT there. They did mention it could be a severe hearing loss from Brain Trauma and there is a possibility it will come back with time. My mom also worked hard to remove Ellie’s nails from vacation today because the bacteria was getting under them and we where having a hard time cleaning them. Ellie was really bummed to loose her nails as everyone kept commenting how pretty they where. I think it was the last thing that made her feel good about herself so that was a hard thing to do today. I promised her that when we get out of the hospital we will get her nails done again and she shouldn’t worry about that. The generosity pouring from the community of Lemont, Family and friends is amazing. I am constantly in awe at everyone working so hard to get my girl home. We are waiting to hear from the travel insurance before we go to plan B. Right now travel insurance wont even think of approval until she gets a fit to fly from the doctors and that cannot happen until she has completed her next shunt surgery.
I told Ellie to say thank you to the doctors and she said “for what?” Glad we are getting a glimmer of our little sassy pants we all know and love.
We planned on today being a quiet just monitoring Ellie kind of day. The doctors are concerned about Ellie’s neck pain and wanted to get a 3 hour MRI. Sadly, Ellie was in the MRI for 2.5 hours and maybe got pictures for 10 min total as she could not sit still. They decided it would be better if she is sedated. The only problem with this is that if they do the entire head, neck and spine they will have to incubate her again. Needless to say they are waiting till tomorrow to make a decision. So Ellie’s blood pressure has been really high and her heart rate has been high also all day so at doctor during rounds tonight decided to put Ellie on a blood pressure medication. The nurse came in and told me the plan and just like that Ellie’s heart rate came down. The nurse said its almost like she wants to keep us on our toes. So they decided to hold off on blood pressure medication because they don’t want it to get too low. During all of this Ellie’s pic line stopped flushing. They put a medication to try and break up any blockage in it and sure enough it started to work again. Well that just wasn’t enough drama for Ellie so she started spiking a fever which is a sign of infection. So they did a full workup and checked everything. I had to wear the full outfit along with an awesome mask during this so I could hold her hands down. After we were done Ellie’s eyes started rolling back and my anxiety started to kick in because it was bringing back memories from previous days when she was un responsive. The nurse calmed me down and said she is just so exhausted from doing the full workup. Dave and I decided it would be best around 8:30 to go to the hotel as I was just sitting there stressing. My mom was with her. Shortly after we left my mom called and informed me that Ellie’s temp had come down but she also had Tylenol but at least the Tylenol was keeping her temperature down for the time being. This gave me some peace of mind and I am thinking I will be good to sleep tonight. My mom has strike orders to call me with any changes so I can rush back. But I am hoping Ellie will sleep comfortably. We have a nurse we have had in the past and enjoy immensely.