April 11th, 2019
I am 13 days behind on blogging so please bare with me. I will try and do 2-4 days at a time till I catchup. So here it begins...
Thursday March 28th our worst nightmare began. As I write this it seams so unreal and sounds like something in a fiction (horror) book. Ok maybe not Horror but Horrifying for any parent. Maybe just a drama for others.
As a family we had a Cruise planned for spring break. It had been planned and paid for over a year now. Doctors told us they felt like Ellie was good to go on the cruise so we went happily. Her doctors explained that there is something to be said for the medicine of a vacation. They did express that they could not fully guarantee that everything was going to be perfect but that they felt she would be ok.
Ellie did have some good times although she was tired and just not 100% herself. During the cruise there were glimmers of Ellie shinning through. She perked up every time she saw a DreamWorks character or got to meet the cast of the production. I want to take a moment to thank Julie Hadjioannou for contacting the cruise line so they made it special for Ellie. All and all Ellie just was not feeling good, kind of like she has been feeling since her brain resection surgery on January 22nd. We were able to bring her gown that she was suppose to wear in the St. Patrick’s day parade. We even got photos with her crown and sash. Back in early march it fit perfectly and sadly it was extremely loose because of all the weight loss she has had.
All and all as the week went on Ellie became more and more weak and tired. Me being a mom I worked very hard to keep pushing Ellie to move. My thought process was that the more you move the more energy you have. I felt that she was just weak from laying around.
Thursday, March 28th
On Thursday March 28thwe docked in Jamaica. Ellie did not have any energy or desire to leave the ship. I forced her to get off the ship and shop around just in the port area with us. We where outside for maybe an hour at the most and she could not sit up and was miserable. She kept on laying on the benches, at one point I brought her to an actual chair and had her sit there thinking she would feel better sitting up. Where there is a will there is a way with Ellie. I looked over at her and She figured out that if she put two chairs together she could laydown. At that point I decided it was time to get back on the ship. But I wasn’t giving up on her staying awake. She wanted to sleep in the room but I made her go out by the pool where the rest of the family had gathered and had her lay on a lounge chair. My sister and sister-in-law along with there families where all by her. Dave and I decided to walk inside and get lunch while Ellie hung out with them. Ellie had no desire to eat and kept complaining of neck pain.
As Dave and I where finishing up lunch my sister came to get us and told me that we really needed to come see Ellie that she doesn’t seem to be doing very well. Apparently they tried to move her because the sun was coming out and they wanted to get her in the shade and she started to fight them about moving. By the time Dave and I got out by the pool where Ellie was. There was a huge crowd gathered around Ellie along with the Deck supervisors and other workers. Ellie was having what looked like a seizure. She had never had a seizure before. Her body was stiff and she had a blank stare to the upper right of her eye Sclera. She was un responsive and there was mass hysteria as my sister was crying along with myself, they where calling the medics and my sister in law was demanding medics right away. Everything felt like it was moving in slow motion around us as the crowd around us grew larger. A very kind Doctor that was vacationing came over to assist and jump in to help until the medical team could arrive. Her and my sister-in-law jumped into action and where cool calm and collective. Me sitting next to her what was 5 minutes felt like an eternity. I was a hysterical mess the medical team arrived and rushed her strait down to the medical unit. I was completely surprised by the technology and what they had on the ship. They had her on an IV before I could fill out the paperwork and had already sent her blood for labs. She was resting comfortably as they did a bunch of tests and received the Ellie’s back history. Ellie finally was speaking to us but she was extremely drowsy and out of it.
Before long they informed me that we would have to transfer to the local hospital to get Ellie a cat scan. Once Ellie was cleared she would be able to get back on the ship as long as it was before 6pm. They took us to our room and helped us pack a bag just in case. We where then rushed by ambulance to the Hospital which was about 20 minutes from port. It was about 1:30pm when we left for the hospital.
I would have to say it was one of the most interesting rides to the hospital. First off as I got into the Ambulance I noticed that the control panel looked all broken along with the seats all ripped. The engine sounded very old like it was going to break down. Dave teased that the “Cool Runnings” Jamaican bob sled team took us to the hospital. I sat in the front seat, BIG MISTAKE. The entire ride I was deep breathing to keep me from going into an anxiety attack. The comical guy “Sanka” from the movie cool Runnings was driving. And if you have not seen the movie he was driving like Sanka drove in the pushcart race.
He played chicken with semi’s he only turned on the siren once in a while. No one moves in Jamaica for an Ambulance. The ambulance team even resembled the Jamaican bob sled team from the movie. “Sanka” or our driver looked like he just shaved his dread locks.
In all seriousness as we drove and I looked around at how poverty stricken the country was and dilapidated the houses where, I got more nervous. I wasn’t sure what we where about to encounter when we arrived at the hospital. When we arrived at the hospital it looked like a new building and this gave me some relief as it looked new and clean. It was probably the size if not smaller then an urgent care center here in the united states. They put us in one of the 4 ER rooms. Ellie was still hooked up to the IV. The doctor came in and we soon found out that they had a “a Mon, everything is going to be alright." No worries” attitude. I was loosing my mind after two hours of being in the ER and doctor would not call Neuro surgeon. I kept on asking and he kept on giving me the run around. So I spent most of my time communicating with my mom as she was speaking with the doctors back home. Ellie’s Neuro Surgeon said if Ellie can walk and is conscious to get her out of the hospital and get on a plane back home. So after my husband paid a fee of $3800 so they would treat Ellie in the first place I went to the doctor and said we are leaving. I told him “there doesn’t seem to be a sense of urgency here and we need to leave.” He then explained “oh well we where waiting for your payment before we did anything” I then explained that we paid over an hour ago and nothing was happening. I asked him point blank “Do you have access to check her shunt?”
His answer “I’m not sure, that is a question for the Neuro Surgeon”
I began loosing it, which is unusual for me to loose my cool on any medical profession “Well you have not called the Neuro Surgeon the whole time we have been here so I am assuming you do not have the ability to check her shunt. We want to discharge her now” We got a refund for some of the money and they took out Ellie’s IV and we where finally going to leave. I felt a sense of relief as I just wanted to get Ellie back to the states. I got Ellie dressed out of her gown and into clothes. We where just waiting for the wheel chair to take us out.
But before we walked out of the ER, the shift had changed and a new doctor came on for the night. He informed me that if we arrive at the airport they will turn us around and send us right back if they feel she is not fit to fly. He said this happens all the time and that if Ellie began another seizure there is a possibility she might not come out of it. I was lost what do we do? Once again as parents we needed to make a decision. The pressure of making a decision like this as a mother is nearly impossible. A nurse came in and said “have you thought about being medi vacced, out of Jamaica. She told us to talk to our insurance” so at that point we decided that it sounded like a safer option. Our insurance does not cover the charges in Jamaica or the medi vac. We fortunately bought a secondary travel insurance we where told they did not accept our insurance. It didn’t matter because our main focus was not money it was getting Ellie back to the states where the medical care is so much better. Her life is more important than money.
Once we made the decision that we would attempt the medi-vac we would have to be readmitted. They informed us that this time we would have to pay $5000.00 in order for them to admit her. Then we started over with the admitting process. Now that they took out the IV from the cruise ship they had to put another IV in. This was a very interesting experience for me they decided to do blood work again even though the cruise ship already did bloodwork. So they took the IV tube and just squeezed blood into an open tube. It was extremely odd and unsettling to watch. They had two nurses holding Ellie up to get her weight. The scale was an old fashioned weighted scale. I took as many photos as I could because it was so surprising to me. It made me appreciate what our medical care is in the States. If Ellie lived there when she was first diagnosed she would be dead now. They then informed me that the medivac team was not coming
This hospital was a learning experience for sure. They only had two nurses and one doctor in ER, 3 nurses on floor rooms and doctors on call. They had a total of about 30 rooms in the hospital and two floors. First floor was ER and lobby; second floor was the 30 rooms. The hospital room looked like
The only thing they could do is have her on an IV with fluids. Now they took the ships IV out and Ellie would have to get another IV. But before treatment we would have to go pay another fee. This time they wanted $5000.00 for admission and treatment. Once again Dave and I whip out the credit card and just pray that she gets medivac team gets there soon. Because our travel insurance could possibly pay for the medivac we had to go through them to set everything up. I thought we where set and ready to get out that night. The nurse put Ellie’s IV in and I watched so carefully and I flabbergasted at there practices. They squeezed blood from her IV into a tube. It just did not seem like a very sanitary practice. At this point I was hysterical and ready to jump out of my skin. I even took a photo because it was so hard to believe this was happening. Ellie had to go to the bathroom so they took the IV bag threw it on her lap in a wheel chair and took her to the bathroom. I went in and held the IV bag while she went to the bathroom. Every inch of my body wanted to get out of this hospital. I just kept telling Dave this is my worst nightmare. They then decide they where going to admit us to a room once again they asked for more money. I wanted to grab Ellie and run. I kept on reminding myself we are getting out of here tonight.
I will say the hospital was clean and the rooms where like a hotel. They gave me a pair of slippers and a bag of hygienic needs. This is about where the quality of care ended. I was informed that Ellie was not going to be medivaced till morning and we should settle in the room. Dave was not aloud to stay over night in the hospital with us and had to go to a local hotel for the night while I slept on the coach next to Ellie. About 10:30 in the evening we finally saw a pediatric doctor. Still no Neuro Surgeon as I requested over and over. To this day we never saw a Nuero Surgeon and per there website they had one on staff but I question if this is even correct.
Friday, March 29th
We woke up and nothing had seemed to change with Ellie. The Travel insurance company contacted me and said they had been trying to get in touch with the Doctor at the Hospital in order to arrange the Medivac and felt like they where getting the run around. They said the plan was to get Ellie out of Jamaica this morning but they did not have room on the plane for Dave and they where unsure where we where going to be taken yet. So we immediately booked a flight for Dave back to Texas so he could meet up with the rest of the family including Jake and drive our car back home. While I stayed with Ellie and cared for her. Dave had to say goodbye to us around 11:30am to get to his flight. I cannot imagine what was going on in his head. It had to be killing him that he had to leave us in a foreign country without final plans being made. There are no Doctors in the Hospital they where just on call. The doctor that came in last night called me on the phone first thing in the morning and told me that when the insurance calls, the hospital will connect her to the travel insurance company. Nothing could be setup without the Doctor speaking with the medical team with the insurance company. But once again the Travel Insurance called around 12noon and once again they said they would not connect them to the Doctor in order to get the Medivac all finalized. Then the Doctor came in right as I was on the phone and I handed the phone directly to her so that she could speak directly to them. I started to think that we where never going to leave Jamaica. The insurance company contacted me around 4pm and informed me the medivac team would be there at 6pm to get us. I felt such a sense of relief. But at same time I got extremely nervous because they informed me that they still did not know where we where being transported to and if there was room on the plane for me. At this point there where no more flights out of Jamaica and I just imagined my baby being transported to a hospital and no one being there for her. Luckily they called around 5pm and confirmed I could right on the plan with her. The cashier as they like to call them in this hospital came up and told me I had to pay them another $1800 in order for them to release her. So once again I whipped out my credit card. Between ambulance ride and this stay we where well over $5000. The care did not matchup to the cost in my eyes. But at this point I would pay anything to get her out of this hospital and somewhere safe.
Funny side note:
There was a representative from the ship that stayed with us in Jamaica and was there as long as we where there to. This was nice to have another person with us. She was quite nice young Philippine girl. This was her first time on the Job even though she had been working on the ship for 6 months. She sat at the hospital the entire time we where there. I cannot imagine how bored she was. Dave told me her name was Marissa so when I had to go downstairs once Dave had left I would ask Marissa to sit with Ellie and she wouldn’t respond. I was really confused until she told me her name was not Marissa it was Maria. Yes, that’s Dave’s listening skills for you. So for Thursday and now Friday I was calling her a completely different name. She told me she thought I was talking to Ellie every time I said Marissa.
6pm arrived and so did the air transport. They where going to fly us to Ft. Lauderdale and then take us by ambulance 45 minutes to Nicklaus children’s hospital in Miami. We had to get back in the ambulance with the Jamaican bob sled team to make it to the airport. The sunset was beautiful. My first and hopefully last private plane experience is what I was thinking the entire flight to Ft. Lauderdale. Ellie spent the entire plane ride tossing and turning. She kept on whipping her head all around. She was so uncomfortable. By the time we arrived at Nicklaus Children’s hospital in Miami it was 11:30pm. They wanted to do a cat scan but couldn’t get her to sit still. They wanted to avoid sedation because they wanted a clear read on what was going on with her. They didn’t want to mask her discomfort with medicine until they had a handle on what was going on. They also informed me that we would not be put into a room until she had the cat scan. I was so appreciative for the coffee outside. As soon as my mom heard what hospital we where going to she hopped on a plane and was in ft. Lauderdale by 11:30 she decided to spend the night at a hotel before making the 45-minute drive as she was exhausted. About 5:30am the charge nurse came and and Ellie had finally fell asleep and wasn’t thrashing her head everywhere. So the Nurse took this as an opportunity to get a cat scan. We transported Ellie as quietly as possible in hopes to get the pictures we needed. We very carefully moved her onto the table for the photos and finally got the photos. I was so relieved because I had been up all night (thank god for the coffee bar) and I was picturing getting up in a room and hopefully relaxing. They finally had a room for us upstairs at 7am. I was just hoping for some rest because I was now up the entire night……….