I could not go to the hospital on Wednesday because I had an extremely important conference to go to. At the end of the school year, I was offered a chance to go to the AVID summer institute conference in Tampa. I was ecstatic and jumped at the opportunity. Well, that conference ended up falling on the day Jennifer was discharged. Originally, we thought Jennifer would be discharged on Thursday, which would have been much easier for everyone BUT there was no chance I would complain because EVERYONE has been waiting and praying for Jennifer to come home.
About an hour after the conference started Jennifer text to tell me she was being discharged that day. While trying to focus and not make to much of a scene, I began texting like a wild would, Jessica was off and running to buy the last few supplies we needed from Wal-Mart, hand sanitizer, monster bottle of anti bacterial soap, 2 sets of white bed sheet (so there is always a clean, bleached, and germ free set available for Jennifer’s hospital bed), flushable wipes, etc. Basically all the little supplies no one thinks about until the last moment. Natalie was off and running cleaning and recleaning the house.
Our mission has been to make sure Jennifer was able to come home and not go to a nursing facility. It has become an obsession to keep everything super clean at all times. With three children in the house, its like throwing a bucket of water on a wild fire lol BUT we have done pretty darn good at it. My mom, dad, and Tom were all texting me throughout the day trying to come up with a game plan. Usually discharge is not an issue for a person getting out of the hospital. WELL…… In this case, it was extremely difficult.
Up to the point of discharge Jennifer was complete and totally bedridden. Physical therapy was able to help her sit on the edge of the bed, and work her muscles while laying in bed, but she wasn’t strong enough to walk. Jennifer believed she would be able to get into the wheelchair, with assistance. I was not sure if she could or not.
I left the conference at 5pm and raced home to get a change of clothes and some shoes for Jennifer. After the million text messages sent throughout the family all day, no one thought of clothes lol. I got home, ran around (literally) getting her stuff together. I stopped for a moment in the living room and out loud asked myself, “why the heck am I running.” I knew at that point I was really nervous to get her from the hospital. So, I stood there, took a deep breath, and said I prayer, again out loud. I prayer for the strength, determination, confidence, and clear logical mind I needed for this discharge and going home process. I drove to the hospital hoping Jennifer would be able to stand or walk some, just to make things a little easier and for my own selfish reasons too.
The nurses at St. Anthony’s have been so wonderful. After sitting in Jennifer’s hospital room for 10-14 hours a day, for 2 weeks, I got to know the nurses well! The discharge nurse, Jess, asked if Jennifer was going to a facility. When I explained to her no, and why I did not want her to go. She, in a very kind tone, asked me if I had any experience as a CNA. I told her no, I don’t, but I believe I can do this and I am going to learn, try, and work hard to get her better. I could tell she was genuinely surprised and happy to hear my answer. She told me half the battle is having the right attitude and I already have that. She then started right in telling me all the important tips, advice, tricks, and information I could possibly need.
When it came time to get in the wheelchair the nurse and tech asked Jennifer if she could stand and get into the wheelchair with help. Jennifer said yes. The slowly moved her to the side of the bed, I was standing directly behind the wheelchair, which was directly in front of Jennifer, so we were almost face to face. Jennifer sat up, with assistance, and tried to pick herself up off the bed, with one person assisting on each side. Jennifer, very slowly, tried multiple times, but she did not have the strength to stand, or put any weight on her legs. I felt so bad for Jen because I could see, by the look in her eyes, she was a little surprised by the extremely weakness and a little disappointed. The nurse called for two more people to assist her.
Two large male nurses came into the room to help Jennifer into the wheelchair. They called it a “total move.” With one nurse on each side, and a nurse in front, they were able to pick up all of Jennifer weight and place her in the wheelchair. At that moment, I started doubting myself and questioning if this was something I could really handle. I looked at Tom and I could tell he was thinking the same thing.
She was brought down stairs to the car and all I could do was pray more. I just waited praying and hoping that I was not overestimating my ability to take care of Jennifer myself. When Tom brought the car around, the same two male nurses picked Jennifer up to put her in the car, Tom had to get in the back seat on the other side, to help pull her in. My mind started racing because the only people I had available to take Jennifer out of the car at home were untrained, not very fit, and scared …… Tom and I.
We drove home at about 30 mph, worried Jennifer did not have enough muscle control or strength to hold herself up properly for the ride home. She was able to stay in an upright sitting position the entire way, thank God! While we drove home I called my BFF Brittany. Luckily, she was just leaving her class and was able to meet me at the house. My dad was at the house with Christian and Olivia but I was worried he would hurt himself trying to help Jennifer out of the car.
When we got to the house, I ran inside and grabbed the wheelchair. Brittany was a wonderful lifesaver because she was the only person at the house with any kind of experience lifting and moving someone in condition Jennifer is in. Brittany, Tom, and I stood at the car talking to each other, and Jennifer, trying to come up with a detailed game plan. I always make sure we are talking directly to Jennifer when we are trying to do something, that way she knows she is an active participant and we are not talk about her like she isn’t there. We all got into position and I was the cheerleader telling Jennifer she was ok, doing a great job, safe, and almost done. We slowly worked her into the wheelchair and Tom wheeled her into the house.
I do not think I have never witnessed a more perfect moment in my life. Tom wheeled Jennifer up the driveway. I opened the door and stood to the side as Jennifer was rolled in. The first thing she saw when she came in the door was Christian and Olivia with the biggest, most excited smiles on their face. Olivia jumped up and down saying MOMMY’S HOME! Christian looked like a little excited angel and yelled DADDY! ….. because he has now decided to call everyone daddy! I could see the pure happiness and joy on Jennifer’s face when she got into the house. I could not have staged a more perfect moment. I kept trying to remind myself to take a picture of Jennifer when she came into the house so I could put it on her Facebook page, website, Twitter, IG, and GoFundMe page, for everyone to see. I was loving the moment so much I forgot, but that’s ok, its an image burned into my brain forever!
Only half the battle was over at this point. We all knew we had to get her into bed. No one was in a rush to move her because this was the first time she was sitting up, in a chair, in over two weeks. I could see the fatigue and exhaustion on Jennifer’s face when we first got home. I asked her if she wanted to go to bed, she said, “not yet.” The motivation, willpower, and happiness was keeping her going. I was worried while she was in the hospital, that she would lose motivation or give up on trying to fight this horrible battle. The battle she is currently fight is harder than any of us can understand. I would never pretend to understand what she is going through or how physically, mentally, or emotionally hard this is for her. Assuming someone can keep fight or expecting someone to never have a moment thought about giving up is unrealistic. I feel like it is my job to always try to do little things, nothing overbearing and nothing over the top, but just little things to make sure Jen has a reminder to keep fighting, keep going, celebrate the small victories, no matter how small they are. All the little things build up to great things.
Once Jen got to tired to keep going we, as an NFL team during the Super Bowl, all huddled up around Jen to decide how to move her comfortably and without injury. One of my greatest fears is doing the wrong thing, or overestimating our ability and Jennifer falling because of it. Falling and breaking her leg, hip, foot, ankle, etc, would crush my heart because I desperately do not want to hurt her, I only want to make things better. Her Dr.’s were hesitant to send her home instead of a nursing facility. I know if I bring her back to the ER with an fall injury she will not be coming home to her kids, her Dr’s would insist she discharges to a facility. So, in are NFL huddle, we all decided on how to pick her up, who had what job, and of course, I was going to be the cheerleader again! I like the cheerleader job. Just giving constant reassurance, mixed with a peep talk for the group is nice. Tom picked her up by the front I picked her up by the back and we slowly worked her into her medical bed.
When Jennifer was first admitted into the hospital, after the seizure, I told everyone I wanted to find a medical bed for her. Having the ability to raise and lower the top half and her feet, I knew, would make a world of difference in her comfort. Jesus came through for us again, as he always does 😉 Tom found a perfect medical bed online being sold by a woman in Brooksville, who only used it for one night for her father. Sadly, he had to be moved into a Hospice facility. When Tom saw the ad online her jumped in the car and drove to Brooksville to pick it up. This took place on the first day Jennifer started to wake up. At first, Jennifer did not seem interested in the idea of a medical bed. In traditional Jennifer fashion, she was worried about the cost of the bed, because this kind of bed is roughly 600-800 new in the store. Jennifer has never ever, not for one second, been the kind of person who would want Tom, or anyone in the family, to spend that large amount of money on something for her. Jennifer, any day of the week, would spend 600-800 on her kids, husband, or family, if she could, but she would never want someone to spend money on her like that. Of course, with all of the expense related to her being sick, we don’t have that kind of money for a bed anyway. Tom got her perfect bed for less than 200.00. A mini miracle!
When Jennifer layed in the bed I was hoping she would like it and she would not feel bad about it, get upset by it, or think it was uncomfortable. Luckily, she liked it as soon as we laid her in it. We gave her the remote so she could adjust and raise herself as much or as little as she liked. She was happy with it, and I was overjoyed. Getting her home, out of the car, into the house, and then into the bed took a total of 3 hours. AND our job was not done yet!
Thursday, the 22nd, she was scheduled for her immunotherapy injection. She has been on this immunotherapy treatment since April, when the last immunotherapy stopped working. Normally, Jennifer would pack a lunch, Jessica would drive her down to St. Anthony’s, she would get hooked up to her IV, she would sit and play on FB for 2 hours, Tom would take her home, and then she would tell me about how bored she was. It was a biweekly routine. This time, we had no idea how we would get her into the car, out of the car at St. Anthony’s, and then back into the car and out at home. To do that, we would need at least two full size healthy adults, who know how to move someone in her condition OR could follow direction REALLY well, AND those two people would have to go the appointment with her stay the 2 hours and come back. Basically asking for the moon, all with less than 24 hours notice. When her discharge date was Thursday, we didn’t even worry about this appointment, because all we had to do was put her in a wheelchair and wheel her over there. The Florida Cancer Center is attached to the hospital. BUT nothing in life is easy so we had to come up with an idea asap.
All I could think was, I was the only person able to do the job. I still had two days left of the conference and even though day one was crazy I LOVED EVERY SECOND! I learned so much and genuinely enjoyed every moment. I did not want to miss day two or three. Of course I would do anything on this Earth to try and make Jennifer better. Of course I would skip the conference if I had to and I know my Assistant Principal would understand, she has been a wonderful role model and my go to for all things “new teacher.” BUT I really didn’t want to miss the conference. I felt horrible for feeling that way. I felt like I was a selfish person, only looking out for what I wanted. I explained to Tom, my mom, dad, Brittany, and Jennifer why the conference was important, my intentions and plans for the future, at the high school I am currently working at, etc. Everyone was trying to think of some way we could find the help we needed in the tiny amount of time we had to brainstorm. It was 11pm and the appointment was set for the next day at 1045am.
While we were brainstorming I could tell, the one thing we all could agree on, was we did not want to move the appointment off to Monday. Dr. Diaz specifically said, we CAN move the appointment, if we need to change the date or time that delay WILL NOT cause a problem for Jennifer. Her immunotherapy is a slow process and it is not something that is time sensitive to that extreme. So, we were all full aware that we could move it back and Jennifer would be ok. I would never, even for a second, consider doing anything that might harm her recovery. Even knowing this, none of us wanted to move the therapy back. The determination, teamwork, ideas, help, and care shown by everyone in the family really was wonderful to see. Moments like that, when we all throw 100% into something really gives me a lot of faith and hope, not just for Jennifer’s recovery, but faith and hope in everything.
After about an hour of solid discussion, we could not come up with an answer. The longer we talked the more and more I was trying to deal with the idea of missing the conference. I wasn’t mad or childish, I was just disappointed in the idea of missing the conference and how important it was to me. BUT my willingness to help Jennifer was more important, and I knew that. Out of nowhere Tom comes up with the most obvious answer. The fact that I had not thought of it sooner made me laugh because it was so basic. WHEELCHAIR TRANSPORT LOL DUH!!!!!!!!!!!!! I felt so relieved know there was a possibility I could still go!!!!! We ended the night happy, thankful, and ready to take on the next day.
Starting at 6am the next morning, my mom, dad, and I were either texting or on the phone to each other for 2 solid hours. I only slept one hour the first night Jennifer was home. My mind was racing, worry, fear, hope, prayer, and extreme planning kept me up all night. I got up at a 5am, got myself ready for the conference, woke Jennifer, gave her all her morning meds, told her about the wheelchair transport idea, and raced off to Tampa, all while texting and calling in a never ending circle of questions. The transport for one round trip from Largo to St Petersburg was 145.00 and no Medicaid will not cover this first trip because we did not call ahead and get prior authorization. So once again, as an NFL team we all huddled up to figure out how to pay for this. In the end, she got to her appointment, she got her immunotherapy, and she got home safely.
We are now, trying to take things slowly, constantly working on muscle movement, keeping her comfortable, safe, and happy. Jennifer’s mood, attitude, expression, conversation, and overall physical health has improved since her was released from the hospital. I know it is because she is now in her home, and her kids are with her now.