It was March 18th 2013. I remember that I had been working a lot of hours. It was warm that year, so I was doing a lot of shoots, a lot of editing, and a lot of hours at my day job. I was tired. I needed to do some shots of my nieces that day with their softball uniforms on. I really didn't want to. I was tired, it was my birthday, and my husband was taking me out to dinner later that day. We met up at the baseball field, and we did some shots. I took a photo of my sister and her 3 girls just because. I couldn't have known that for the next week, I would look at that image more than 100 times in complete confusion and despair. My sister seemed fine. I would say she was joyful and full of life. She's had some medical issues in such as fibromyalgia, arthritis, and some other things. She has good days and bad days. I love my sisters so very much. They were my first friends. I, being the oldest, was mean to them a lot. I have regrets now for how I treated them. So, we finished up the photo session. I really only needed a few shots of my nieces. It took about 45 minutes or so. It was a nice warm sunny day. I can close my eyes and go back to that day at anytime.
Lets back up a little bit. In January of that year, we lost an uncle that we were very close to. February 10th of the same year, my mother lost her battle with breast cancer. On March 10th, I had my very first mammogram and was notified of a "spot" in my left breast. Me and my sisters felt like we had been through the ringer. It was a rough start to the year.
Fast forward to continue the first paragraph: We finished the shoot and I went home. The next evening was March 19th, the day after my birthday. I believe it was around 5-6:00pm. My sister's ex husband called me. He was very scared and his voice was shaking. He told me that my nieces said when they got home their mom was sleeping just as she had been that morning when they left for school. They said that she wasn't really talking much. My ex-brother in law was telling me that she was unresponsive, her mouth was foamy, and her skin was a weird color. I live 8 miles or so from my sister. I got in my car and drove there immediately. I called my other sister on the way. When I got there, my sister (Desi) was unresponsive. She looked like mom did just before she died. The whites of her eyes were a yellow color, her skin was grey, there was dried saliva at the corners of her mouth and foam between her lips. She moaned in pain when we tried to move her. Her eyes wouldn't stay open. She was trying, but she couldn't keep them open. I began to cry. The sight of her was causing flashback to 5 weeks prior when I watched my mother lose her color, and take her last breath. I called the ambulance. They came and got her.
Danielle and I drove to the hospital and went to the ER to wait. The doctor came out to talk to us. He explained that Desi had the worst case of Pneumonia that he had ever seen. He said that she only had about 10% of her lung capacity that she could use. He explained that she wasn't able to move or respond because her body wasn't getting enough oxygen to function. He said that her pneumonia was fatal. I asked, "what does that mean? She's going to need to be in the hospital?" He grabbed my arm and said, "do you understand FATAL? She's going to die. We can bring in the Chaplin for y'all". I was floored. He was wrong. He had to be. I was just with her 24 hours prior and she was fine. This was ridiculous. Danielle and I were taken to the grievance room. We cried. A counselor came in to talk to us. This didn't make sense. We couldn't lose her. We just lost mom. Where was God??!!?! Why was he leaving us here like this!?!? We called my grandmother to tell her. The doctors had her in there with Desi for about 15 minutes and told us that they were going to give Desi a shot to reverse any pills she had taken (all prescription stuff). Maybe 2 minutes had passed when we heard her. She was screaming. She was not making sense, but it was definitely her voice. She was in excruciating pain, and she was mad. They wouldn't let us go in with her. We convinced them that we could calm her down. They said she didn't have enough lung capacity to support her being this upset. Her being upset and yelling could kill her. They allowed us to go in there with her briefly. I can't remember everything that we said to her, but she was more calm with us in there. We tried to explain things to her. We tried to explain that these doctors were helping her. I remember her saying very clearly "I see Mom". Danielle and I looked at each other. We were very scared that she could see Mom because she was going to join her. We tried to get her to explain but she couldn't. To this day, she doesn't remember saying that. Shortly after, they gave her some medicine to help her relax, and go to sleep.
They explained to us that there was only one option that they had. They were going to put her in a bed that would have her on her stomach and rotate her slowly to help the 10% or her lungs be able to function better. She would rotate from side to side. We watched as they loaded her onto this bed and strapped her down. She was put in a medically induced coma, and put on life support. The nurse's name was Linda (that was our mom's name). The other nurse was Charlie (the name of my mother's brother). Strange coincidence, huh?
I didn't want her to be alone when she died. My sister was dying. My life could have ended with hers and I would have been content with that. I realized during all of this that I loved her. I loved her more than I knew, more than I loved myself. She was in there for a week. I didn't have anyone to talk to. I would talk to her. I would write notes to her in my phone. I guess I was kind of blogging the events to her. I am writing this blog to document the letters/notes that I wrote to her. You need to know that I call her Lou. I have since she was little. Anyway, my sister was dying and I wanted to remember each step. Below are those notes I typed to her on my phone.
March 20, 2013 1:17am - Desi, It's a little after one in the morning. They have your fancy spinning bed working properly with all of the machines you need. I'm scared. The doctor said on a scale of 1-10, your lungs are a 10. Danielle was here but left around 11:30 with Chelsea & Samantha. The nurse just gave you a shot in your tummy about an hour ago. It was a blood thinner to that you don't clot. I keep praying, but the fear of losing you keeps sneaking in. I can see your face through a peep hole in the machine. Your eyes are closed but very swollen. Your tongue and lips are very swollen and your lower lip is split from the swelling. Your mascara is still holding strong. Lou, I'd rather it be me in that bed than you. I love you very much. I'll keep these notes for you to read when you get better. They didn't sound optimistic a few hours ago...even asked me and Danielle if we needed to talk to the chaplain. We freaked out...a lot. But the nurse watching you now said your oxygen is improving. Her name is Dorothy. The head nurse is Jean. They are both really nice. I'll write more later. I love you, Lou.
March 20, 2013 1:42am - Desi, here's how this all began: Phillip called me around 5pm on Tuesday the 19th. He said he came over to your house to get the girls for practice because you weren't answering the phone. He walked in and were on the living room floor unresponsive and that there was white film on your lips. The girls said that you were like that when they left for school that morning. I left my house and went to your house immediately. When I got there for a few minutes. I went in and you were laying on the couch. You would look at me for a second or two if I said your name, but you couldn't speak. We were gonna load you in my car to go to the ER but when Phillip tried to lift you, you yelped in pain and scrunched your face. I called 911. There were so many people there and it made me think about Kaylie. It was too much. I hated seeing you like that. The ambulance took you to the hospital. Danielle and I beat the ambulance here (to the hospital). When you got to the hospital they gave you a shot that reverses narcotics. Because they weren't sure if you had taken you medicine of not and then maybe not eaten. They also did an x-ray of your lungs. The doctor said on a scale of 1-10 (10 being the worst), you were a 10. He showed us the x-ray. You were violent and very irate. They had to retrain you. Danielle and I went in there with you and would talk to us but you wanted us to help you get out of the restraints. You kept saying "expect it". At one point you said you saw mom. That scared us real bad. Anyway, the doctor told us that you were on 100% oxygen but your blood oxygen level was 70. He said healthy people breathe in 21% oxygen from regular air and their blood oxygen level is 95. Ok. That was beyond scary. He said that your lungs weren't able to function well because of all the fluid and possible aspiration. He said that they would have to sedate you and then put you on life support because the life support could push oxygen into your lungs so that your lungs wouldn't have to work so hard. Without life support your chance of survival was bad. They got you on life support and then moved you to ICU to this bed that you kind of rock from side to side...very slowly. I going to try and sleep now. I can see you from the couch I'm sleeping on. I won't leave you. Love you, Lou. Gnite, my sister.
March 20th, 2013 7:42am - Desi, This morning they have brought your oxygen intake to 50% instead of 100%. That's great. That means your lungs are taking in the oxygen...well, your blood is. You are going to be on the life support while you are in this bed. Last night the nurse said "this bed is going to save her life". At this point I think she may be right! They are also pumping your stomach because without food your stomach will produce acid and they can't leave that in there. I rubbed your arm. You don't know that I'm here. It's going to be your birthday tomorrow. I won't leave you. You're gonna have to spend your birthday with me, life support and that bed. You have a new nurse today. Her name is Heather. She doesn't really talk to me. Oh well. They said your blood oxygen level is 96. It was 86 last night. This is good news. I didn't sleep well. I could see you in that bed every time I woke up. There's no TV in this room, so I just watch you. That's probably creepy, huh? My bad. Phillip is coming up here in a bit, so that I can go home, shower and change. I smell bad. :(
March 20th 2013 11:50am - Desi, You are still on life support and still in that rotisserie bed. They just checked your lungs with a stethoscope. He said your lungs sound better. They are improving. They gave you a breathing treatment in your life support machine. A man just came in here from another department to tell me and Phillip that the bed you're in saved his wife's life about 3 years ago. So we are getting more hopeful. Your lips and eyes are even more swollen. I covered your hiney to save you some dignity in front of Phillip. :) Oh Desi, I can't wait to see you breathe on your own. They started you on food...it's liquid...obviously. They are hoping you will improve with some food. I'll write more later.
March 20th 2013 2:58pm - Desi, I sit by your bed a lot. You don't look like yourself. I'm sorry that I can't fix this. Last night in the ER you asked me to help you. You asked me to let you out. I can't help. I fell totally useless and helpless. I cry a lot when I look at you. I love you so muh. I hate seeing you like this. I few weeks ago I told you that I couldn't understand yyou being sick. I understand. I'm so scared. Nothing has changed since the last note I wrote...just feeling alone and wish I could do something to fix your lungs, your arthritis and your pain. I know that I don't want you to be here alone even though you don't know that I'm here. I miss you.
March 20th 2013 4:14pm - Desi, The doctor just came in. He said that they are treating you for all the culprits of infections. Your lung cultures did not come back with a specific type of bacteria to blame. that doesn't sound good to me. Your skin looks good, your color is good, your lungs sound better but they alr4eady told me that earlier. I think there is no change and they don't know what else to say to me. Two doctors have casually mentioned that they will be praying for you. Girl, half the nation is praying for you...seems like. :) Lots of people praying. It scares me that the doctor said they can't pinpoint a bacteria. What does that mean? I wish mom was here with me and you. She would know what questions to ask. I was hopeful earlier, but now doubt is sneaking in. If they can't fine the bacteria causing the infection, then how can they treat it? White blood cell count is lower than it was when you came in so that's good. I brought my computer back with me (when I went home to shower) so that I could work, but I haven't gotten any thing done. I just watch you...spinning in your rotisserie bed. The respiratory doctor came in too. He left your oxygen at 40% which is not much higher that regular air; however, its still having to be pumped in you through life support. That's all I have for now.
March 20th 2013 6:05pm - Desi, The nurse walked out of here very quickly after checking one of your machines. When she came back she brought the respiratory doctor with her. There were talking about your breathing. Apparently your life support makes you breathe 23xs per minute, but you breathed 25 which means your lungs are ignoring the paralytic medicine and they are trying to breathe!! This is good. That means when your lungs heal, they will probably work on their own without life support. Oh God is good. Those little bits of reassurance periodically are wonderful. Those little glimpses of hope keep me from being irrational and panicky. Needless to say, you have to be completely immobile in the fancy bed, so they had to bump up your paralytic medicine. This little glimpse of hope means see ya soon, my sister...well probably in a couple of days.
March 20, 2013 8:58pm - It's just been you and I all afternoon/evening. At 7pm you got new nurses for the night shift. Their names are Tiffany and Heather. They seem nice, but they chat with each other too much. I don't like when the mess with you and don't tell ne what they are doing. Tight after they got here, they turned your bed over so that you could be on your back. They cleaned your face, applied lube to your lips and tongue and then repositioned the pads on your bed. I can see your face better now. They said your skin is not breaking down. They said you have good skin. Now your just chillin' again. There have been no improvements this afternoon. Dad is gonna come up here in the morning and Danielle will be here after work. I don't know how word gets out so fast, but everyone and their dog is calling me to check on ya. Laureen texted me and wanted to come up and see you. I told her it would be pointless since she can't see you. I warned dad that you are not recognizable. I know it's you because I've watched you swell and I can see your nicely manicured toes out of a little space at the bottom of the bed. :)
March 20, 2013 10:54pm - Desi, No new news. You were over breathing the life support again. They had to up your dose of the paralytic medicine. I'm gonna play a game I guess to help me stay awake. Your birthday is in one hour and I'm determined to not fall asleep. Love you.
March 21, 2013 12:04am - Desi, HAPPY BIRTHDAY!!!! I love you so much. I know this is not going to be an exciting birthday for you, but I'm pretty excited that you made it to this one. Still not out of the woods yet. Got a long way to go. No changes. You are still on 40% oxygen with blood oxygen level at 95. Life support has you breathing 24 breaths per minute, and your lungs sound better than they did. I'm gonna watch you until I fall asleep. I'll write you again tomorrow. Get some rest, Lou. It's your birthday! Maybe they can add a birthday cake IV. :)
March 21, 2013 12:32am - Desi, I couldn't help it. I walked over to your bed to tell you happy birthday and that I love you, and I lost it. My knees became week. I had to brace myself on the frame of your bed and I sobbed. This time I couldn't stop sobbing. I know this is not where you want to be on your birthday. I'm sorry that you have to be here. I will have a special birthday dinner for you when you get out. Something healthy. Desi, I want you to be healthy. I'll help. I'll do whatever you need me to. Want me to walk with you everyday? Maybe 3-4 miles a week. I'll be your accountability partner. Desi, we will eat salads, walk until we are skinny, and stop smoking forever. We won't even do it socially. We have to get you healthy. I need you around longer. I need you here with me. Your girls need you to be healthy. I'll help. Oh Desi. Seeing you in that bed with your swollen face hurts my heart. My heart physically aches seeing you like this. I'm going to lay down and watch you for a while. Maybe get some rest...both of us.
March 21, 2013 9:09am - Desi, I've been up for a while. Went to the gift shop to find you a birthday present...found nothing. But the doctor came in. I have awesome news! Your left lung is clearing up according to the x-ray. They are going to leave you on your back for a while to see if your body can tolerate it and for how long. They are giving you a bath right now, because you started your period yesterday. The swelling in your face is going down. It'll get better with you on your back now. Your skin looks good. There are a few blisters from being on your stomach in this bed. The doctor said they may have you out of this bed in the next day or two and try to wean you off of the sedatives and the life support in the next couple of days. Every one seems positive and optimistic. The cardio guy is here right now. He is going to do a sonogram of your heart to make sure there was no damage done to your heart from when your blood oxygen level was low. I've been here 2 days and now I'm thinking I'm a doctor. Ha! Just kidding. Anyway, they are positioning you for the cardio sonogram. so far you've not been on your back this long and your vitals are good. your body isn't freaking out. That's really good. :) The have ice packs on your face to reduce the swelling. So the only people that saw your face like that was me and Phillip. However...I did take a picture if you want to see it.
March 21, 2013 10:20am - Desi, your swelling has decreased significantly. Your face is starting to look like you. I'm going to take a picture for you to see later. I'm not leaving you. I am going to go home for a little while later, make a dish of enchiladas, and then I'll come back. Stephan called up to the hospital looking four you. I talked to him and told him what was going on and told him that he can come up here and visit. Phillip said that one of your girls turned on your cell phone and it was dinging with notifications, so he just turned it off. Oh Desi, you look a hundred times better. Your tongue was so swollen that it was smooth and bleeding, but now I can see your taste buds again. I don't know if I've mentioned before that your tongue hangs out of your mouth all the time. Katlyn texted me to let me know that the other day you told her you wanted to sleep all day for your birthday...be careful what you wish for. :)
March 21, 2013 1:42PM - Desi, Well, it's good to see your face. It's still swollen, but it's somewhat recognizable now. Phillip just left. Dad was here earlier and will be back later today. It's just you and me, kiddo. They are going to lower your paralytic meds later to see if your lungs will function on their own. Your blood oxygen level is good, so your lungs are taking in oxyger and distributing it to your blood. Your body IS working. It IS fighting. Just keep fighting, Lou. I'm not going anywhere. You're going to be ok! I know it! When they lower the paralytic medicine they will know if you can come off of the lofe support. If they take you off the life support then they can reduce the sedatives and see if you wake up. :) Hope that's today...actually I don't know that you'd be able to open your eyes with the swelling. They've had to put ice packs on your face to reduce the swelling. Oh I can't wait to see your eyes and hear your voice. Gonna try to rest a bit. Oh! I almost forgot to tell you that apparently my body felt sorry for you and picked up on the vibe to start our periods together. Lovely. Bleh.
March 21, 2013 2:13pm - I'ts 3:21 on 3/21
March 21, 2013 4:38pm - Deeps and Tiger are your nurses right now. The ICU manager, Oscar came by to chat. He wants you to come back when you are up and around to say hellos to everyone here. :) Right now they are moving you to a regular bed and out of the rotisserie bed!! Huge improvement. So Excited! Oh Desi...they tried to get you moved but your heart rate went through the roof. It was 171. They are trying to get you calmed down right now and then try to move you. I'm not sure what's going on. Heart rate is dropping. Whew! Calm down, Lou. Nice and Easy. No one had touched you to make your heart rate go up, so they are letting you relax right now. You're at 115 now. Don't do that. You scared me. You are now transferred to a regular bed. Danielle just got here.
March 21, 2013 6:21pm - Desy, Thye took you off of the paralytics. You are trying to cough but the breathing tube is still in your throat. You are scaring me. You are opening your eyes and looking at me. You shake your head yes and no, but you are trying to talk and that's not good. They need you to relax. You may get the breathing tube out tomorrow. It scares me when you try to cough. It looks like you are convulsing. I am crying and having a hard time seeing you like this. It hurts to know that you are uncomfortable. I am trying not to freak out. I'm sorry.
March 21, 2013 8:59pm - Stefan came by. He was here for about an hour. The nurse (Tiffany) used the suction in the respirator to clear some loose junk in your lungs. When she did that you started coughing. Your coughs don't make noise. It just looks like you're gagging on the breathing tube. You looked at me. I asked if you could see me. You shook your head yes. I asked if you were scared and you nodded again. I explained why you had a tube in your mouth and you quit using your tongue to mess with it. The nurse said you won't remember any of that. I hope not...especially is you are scared. I wish you were not scared. They are taking really good care of you. They are all very nice. Your swelling hos gone down a lot. It's hard for you to open your eyelids because they are very swollen. They gave you more antibiotics and more of the sedative so that you could be more comfortable. Apparently the breathing tube is very uncomfortable and even people who are sedated try to pull it out, so they put your wrists in restraints. Stefan said you had a court appointment tomorrow, so I'm gonna call Phillip and see if he can find that information so that someone can call and let the court know that you can't make it...something about the Wallace house. Anyway, I'll write more later.
March 21, 2013 11:24pm - Desi, You are still coughing (silently) periodically. It's not as scary now. I think they have you on a better sedative. It's now as hard to calm you down when you cough. The nurse tells you that you have a breathing tube and you nod, so that's good. You don't kick around as much when you do wake up. It's usually on about 5-10 seconds that you're awake, and maybe once an hour at most. I'm gonna try to sleep. Tomorrow they are going to do a trial run without the life support. They will turn the sedative really low and then turn the life support off. If you breathe well for a little bit then they will remove the tube from your throat and lungs. If you are not breathing well or if your breathing is erratic then they will bump up the sedative and leave the life support tube. No bueno. So I say you need to get some rest and let's do this tomorrow. Tomorrow I just know you're gonna breathe on your own, you're a fighter. I can't wait to see ya tomorrow. I know that the coughing is uncomfortable and you get scared, but I enjoyed seeing your eyes earlier. They look...different...tired, grey, but I enjoyed seeing them. Well, only 36 more minutes left of your birthday. Happy birthday, Lou. It was a good day. Progress was made.
March 22, 2013 5:05am - Desi, They just emptied your stomach to see if you are absorbing the liquid food. And then they put it back in. X-ray tech came in with her big ole machine and took some x-rays of your chest. You didn't try to cough very much. Just a little. The nurse asked if you were in pain. YOu nodded, so she bumped up your pain medicine. Your swelling has gone down a lot. From this angle you look like Danielle...it's weird. Yesterday when you were still really swollen, Danielle said you looked like me, so I guess we all look the same just depends on how swollen our faces are. :)
March 22, 2013 8:51am - Desi, You woke up a few minutes ago. I was able to talk to you and see your eyes. They are bluer today. I literally see life in them again. I can see you. The swelling is down in your face enough that you look like yourself. You were awake for a couple of minutes. I explained what I could and so did the nurse. You nodded and seemed to understand. You were wiggling your eyebrows, so I though maybe something was wrong but I asked you if you were just moving them and you nodded. :) I would assume all of the paralytics are out of your system now and that you have complete control of your muscles and stuff. You are not over breathing the ventilator. You are just letting it breathe for you. Sounds don't wake you up, but the slightest touch does wake you. :)
Okay, the doctor just left and he said that you can come off of the ventilator at 9:00!! I am so excited. You just had another coughing fit. This one was tougher for you because they have reduced the sedatives a little, so the coughs seem scarier to you (and me). Hang in there a few more minutes and this life support is outta here (using my best umpire voice). This may be the last note to you since you will be awake more and off of life support. You know more of what's going on. I love you so much!! I am going to be a better sister to you. I promise. First thing...I'm smashing your smokes. :)
These were the notes I had typed to her while she was in the hospital. I just don't want to lose my phone and never be able to remember these, or show them to Desi. She has since read them. I will upload pics to this blog at a later time.
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