Thursday, June 24, 2010

An anniversary to remember

We were discharged Wednesday, June 16th. It was an absolutely insane day. I was unaware of the massive logistical challenge Patrick's at home care would be. I have had to take classes on how to care for his PICC line, and then we found out that Patrick was going to go home on IV antibiotics. I had no idea how that was going to work. We were told by our discharge nurse that we were going to have to set up care with a home healthcare service to get us the medications and help administer them. Now he is going to be on these meds for two more weeks. My heart instantly start to race. What is that going to mean for the both of us going back to work. We were assigned a case manager, and she helped us get everything lined up. A little after lunch a nurse from the agency came in and trained me on administering his medications. It isn't terribly hard, but the risk of infection for him makes it so important for things to be done just right. He can't afford to get sick like this again. While Patrick was resting I walked the length of the hospital three or four times running errands. I had to pick up his pill medication at the in house pharmacy, pick up his supplies for his PICC line, get a rental, pick up more supplies, and my cell phone was ringing off the hook with work stuff. One might think I would want to pull my hair out, but I skipped from office to office. We were headed out which meant we were one step closer to home. Patrick got a shower - a real shower and shaved. He had grown a beard and more hair than has in the 9 years we have been together. There were patches here and there on his head and in his beard where his hair has fallen out from chemo, but it still took him a good while to get it all done. He was so weak that I had to drag a chair into the bathroom for him to sit on while he shaved. He put on the clothes that I had picked up for him on one of my two ventures out of the hospital. We called for transportation to come with the wheelchair, and while Patrick waited on them, I went and moved the car. They rolled him out, he got in, and we rolled out!

Of course we hit 5:00 Houston downtown traffic and there was something wrong with the transmission of the rental. When the car was changing gears it jumped like a bunny. Six to eight lanes of traffic packed to the gills. For those of you from Columbia, it would have made malfunction junction look like a dream. It didn't bother me one bit. The sun was shining and we had the radio turned up. By the time we got to Krista's house, my face was sore from smiling. Patrick can't lift anything of substance, so I got him inside and I unloaded the car. Patrick wanted seafood for dinner, so I went to this great place down from the house. They are famous for their crawfish, but Patrick wanted shrimp. I got fried oysters while the getting is good. Thanks to BP, soon it will cost an arm and a leg to enjoy those delectable little creatures with no arms or legs. We tried to sit outside on the deck to eat. We were both well overdue for fresh air and were willing to put up with the 100 degree heat. Our plans were thwarted by the swarm of what appeared to be love children of a helicopter and mosquito. BP should look into drafting them, because they could suck start a leaf blower.

After eating, Patrick and I both crashed on the couch for a little while and watched a little TV. We were both sheer moments from falling asleep, so we called it a night early.

My cell phone alarm went off at midnight to give Patrick his antibiotics. I pulled out all my supplies, gloved up, flushed his line, primed his infusion kit, and hooked him up. I dozed for about an hour and a half until the infusion was done, unhooked him, flushed his line again, went downstairs to get his next does out of the fridge so it could get to room temperature, and went back to sleep until his next dose was due at 6:00. After the 6:00 dose I went back to sleep, and didn't wake up until nearly noon. It was glorious to sleep without the interruptions of beeping monitors, freezing temperatures, and a constant parade of nurses. It was the first true rest I had had in nearly 3 weeks. We got up, got some lunch, and ran a few errands. It wasn't until we were out and about that I realized how much weight Patrick had lost. After going to Walmart for supplies Patrick was given out, and I finished the errands while he waited in the car. Before I was able to get everything done, Patrick was given out, so I dropped him off at the house, and finished up. One of the major needs was a suitcase. As I mentioned, Patrick can't lift anything, and we had two carry on bags worth of medical supplies and them some. I checked around, and got a huge bag from TJ Max that I could have comfortably fit into. It is fire engine red with silver accent. I learned the hard way that every single black suitcase is manufactured at the same location because they all look just alike coming off of an airport carousel. Second order of business was exchanging our rental for something with a working transmission. I was NOT going to get stuck on the side of I-45 and watch my ride home fly overhead on Saturday. The folks at Enterprise were very nice, and the gentleman there seemed very impressed with my car knowledge skills. "It's a great car, but when it is changing from 1st to 2nd and especially 2nd to 3rd is seems to get hung up. It also is revving in 4th." I didn't think that was anything amazing, but I suppose many women that have issues just throw them the keys and say "It's broken. Give me a red one. It will match my purse." They told me that they had a little Vibe and then a Jeep Cherokee. Seeing that I drive a little black Civic matchbox, you couldn't pay me to drive anything as big as a Jeep in Houston, so Vibe it was. It was the super basic with manual everything except transmission. He apologized for having to downgrade me to a car that wasn't as fancy. "Will it leave me on the side of the road? No? Then it is my favorite. I think I can swing rolling down my own window." "Mrs. Stone, it will be ready in the morning at 8:00."

Patrick's PICC line has two ports in it, and it is very important to not stress the line or put to much pressure in it. A slow port can mean a damaged line, or clot, and pushing to hard on a flush could damage the catheter or move a clot with possible terrible consequences. The port wasn't totally blocked, but I went ahead and called to infusion center at MD Anderson and set an appointment for them to take a look at it on Friday. When I got home from all of my running around, Patrick was sound asleep, so I worked on some work stuff, organized the mountain of paperwork for his infusion care, paid a few bills online, and checked my email. When Patrick got up, he took me to a great hibachi place for dinner. It was a wonderful date to celebrate his recovery. Nothing like a onion spewing fire like a volcano and a chef juggling meat like a clown at the fair to celebrate.

Friday morning I did Patrick's infusion, jumped in the shower, ran got the car, and came home to pick up Patrick and it was off to MD Anderson. We both looked at our watches, realized that we were running behind and began hurrying to get out of the door so we wouldn't miss his appointment. We jump in the car, and we realized that our watches are still on South Carolina time, so we were an hour earlier than we thought. We both chuckled, and decided to go ahead out there. There is a great coffee shop in the main lobby, and a Mayan Mocha sounded perfect. As we drank our coffee we both made a few phone calls to update people on our weekend plans. The IV team got him all fixed up, and then we headed back to the house. I knew I had spent to much time here when I realized that I didn't need to Google Map my trips back and forth from Krista's to the hospital. Her house is in North Houston, and MD Anderson is downtown, so it is a bit of a drive - a drive that has become to familiar. We picked up some lunch, and on the way back, Patrick talked about going to a matinee movie later in the day. We came in and Patrick went upstairs to rest, and I pulled up the movie times, but I wasn't about to wake him up for a $3 discount on a movie. By the time he woke up, Krista had gotten home from work. The two of us sat around and talked for a while. She had some church obligations, and had been incredibly busy, and it was so nice to get to just sit around and shoot the breeze. Patrick nor I was super thrilled about the movie choices, so we decided to just hang out around the house and watch a movie on my laptop. We ate our leftover Japanese for dinner, and then headed to our room. We talked for a little while about the last three weeks and how insane this has been. We decided on watching the movie "Fireproof," and after it was over I just started to cry and cry.

Up until then I had cried some. I cried when I first saw Patrick filled with tubes. I cried when he was behaving like he had a stroke and the doctors told me that he may or may not get any better than what he was right then. I cried was able to move his left hand, and I cried when he told me "I love you." after days of not being able to speak, but I knew that these tears were on the surface. I had not had the energy or luxury of letting my true emotions loose. Then I wept. The tears came in powerful waves, and I could hardly catch my breath between them. I felt like I did when I was knocked down by a huge wave at Pawleys Island when I was a kid. The undertow was so strong that as soon as I felt like I was going to get back on my feet, the salty water would suck me down again. I vividly remember the sheer terror I felt as the sandy water got in my mouth. That is how these tears came. As soon as I thought they were over, I would once again get snatched under the waves. I wept for nearly a hour. All of the fear, exhaustion, sadness, and hopelessness poured like a heavy rain. We talked most of the night, and I filled Patrick in on some of the difficult realities of his situation. There are some things you can't tell someone until it is over. Things like the doctor telling me that if I had any legal paperwork that might be important to bring it; like the neurologists saying that he might never be able to use his left side or talk again; like when I had to wake him up to remind him to breath; like when I was afraid that I wasn't going to make it to Houston "in time." Things like that. We both cried. There were tears of sadness and of joy. We went to bed with the knowledge that Saturday would bring us home.

Saturday, June 19th was our 6 year wedding anniversary. Patrick woke me up when he got up to go to the bathroom right before his infusion. I pretended to be asleep until the door shut, and then I leapt out of the bed like a gazelle, pulled out a card I had picked up for him when I was out getting things for our trip home, put it and a piece of chocolate on his pillow, and played possum. The card talked about a husband kissing his wife every morning, and it made me cry right there in the isle of Wal-Mart. For the last 6 years I have woken up to a kiss on the forehead and "I'm gone. I love you." That kiss and those words I had longed to hear for weeks. When he came back into the room I heard him say "Aww." I opened my eyes and told him happy anniversary. He said "I didn't get you anything." Before he could say another word I told him, "Patrick, you have given me exactly what I wanted for our anniversary. By dinner time we will be home, and that is the best gift you could ever give me. This is the best gift I have ever gotten. You, healthy and on a plane home." He read the card, and leaned over with a kiss. After that, I got up and gave him his infusion, jumped into my clothes, and we said our goodbyes to our Houston family. We got our enormous red suitcase into the car, loaded our carry ons, and hit the road. I was grinning from ear to ear.

We were told by Coram Infusion Services to be at the airport about two hours before our flight because we had liquid medications. They had given us lots of documentation to prove that what we had actually were medically necessary liquids. The woman that I spoke with told me this horror story about a little old lady that was not allowed on the plane because someone at the TSA thought that her medications might be a bomb. Keep in mind this little lady was in her late 70's, about 95 lbs, and pushing a walker. We checked in, and the attendant behind the desk asked me if my bag weighed more than 50 lbs. I told him that I had no idea, all the while thinking I felt like I was pulling a case full of bricks. Because of Patrick's spinal fluid issue, he couldn't pick up anything. I was dragging our suitcase that I could have ridden in, two carry on bags, and my backpack. They weighed the bag, and it was 54 lbs. He told me that it would cost an additional $50 to check our bag. We opened our suitcase up, and pulled out 5 lbs of stuff. A few pair of jeans, shoes, and some medical supplies put us at 49.5 lbs, and $50 in the black. After printing our tickets, we headed off to security. I just knew that I was going to end up getting a cavity search from some woman named Gladys and get put on a terrorist watch list. I try my best to hurry and get my shoes off, unload my laptop, and take my phone out of my pocket. I hate airport security. I always feel like the people behind me are irritated that I am not moving fast enough. They probably feel the same way about the people behind them. When I got to the security desk, I told the guy at the x-ray machine that I had medications in my bag, and as I began to pull out the paperwork, he just shooed me on through the metal detector. I must not look like a Homeland Security risk.

Once we cleared security, we headed off to our terminal. We hadn't had anything to eat, so we stopped for a doughnut. After an overpriced yet delicious blueberry filled mouthful of joy, we made our way to the terminal and had a seat. We had a good hour layover in each of our stops. We sat and waited, and waited, and waited. We were delayed 47 minutes. Every 10 minutes or so we would hear, "For those of you waiting for Continental flight 1562, we are still waiting our your plane to arrive. Once it lands, it will be cleaned, and re-catered and then you should be on your way." Re-Catered? Really? We were flying from Houston to New Orleans. It is a 1 hour flight. How much soda could one plane need? I just knew in my heart that we were not going to make our connector to Charlotte. We landed in New Orleans 15 minutes before our flight to Charlotte was to take off. Much like when Patrick's parents and I flew out to Houston, I took off in hopes of catching the plane. I ran to the closest TV monitor to see what terminal our plane was, and they only had the flights for Continental (and our second flight was with US Airways). I had to stop and ask someone, who had to call on her radio. She gave me the terminal information, and I take off only to find that in order to change from one terminal to another in New Orleans you have to go through security again. At the sight of the x-ray machine, I knew that all hope was lost. Because I had to ask about our flight information, Patrick had caught up with me. "How have you only gotten this far?" Holding back tears I tell him, and we rush to the terminal. We get to the counter, and there was this very friendly man who knew exactly who we were. "Are you Mr. and Mrs. Stone? I am so sorry, but the plane is gone." I start to cry, and step to the bathroom. I called my mom, and the conversation went something like this: "MOMMA!! (crying crying) I can't believe it. We missed our stupid plane. (crying crying) We have got to get home. I can't believe this. All I want to do is come home! (crying crying) I gotta go. I love you (crying crying). *click. I wash my face, and head back to the counter. Keep in mind that Patrick is wearing a mask, and is noticeably weak. I pour my heart out to this enormous man. He clicks away on his computer with a very sweet look on his face. I knew that look. It was the same look that I had gotten on the way in. "I am so sorry Mrs. Stone, but there are not more flights to Florence until tomorrow. Is there any other airport close by?" It didn't occur to me to say Columbia. Flying out of Columbia always costs an arm and a leg, so it isn't really in my airport brain even though my house is less than 5 miles from the end of the runway. "If you can get me to Charlotte, I can get somebody to come get me. It is only a few hours." "There isn't anything closer?" Patrick chimes in with a very uncertain tone in his voice. "Well, Columbia." There was more clicking, and the words that quickly turned my frown upside down, "Sure. We have two seats to Columbia. The flight will land about 7:00 this evening." My heart let! Patrick went and sat down while we got the details straight. He asked about Patrick. "If you don't mind me asking, is your husband ok?" I commence to tell this perfect stranger the Reader's Digest version of the last year. He listened with a shocked look on his face, and said that he would be sure to keep us in his prayers. I call Momma back and fill her in on the updated flight information. I think she was relieved more by the fact that I wasn't hysterical than the fact that I was on the way home.

We make it to Charlotte without a hitch. I called my friend Denise and asked her to pick me up from the airport. She and I sing together at church, and she is a jewel. She lost a brother to cancer, and we have become very close since Patrick was diagnosed. She said she would be there with bells on. As soon as the wheels of the plane touch South Carolina soil, I called her again, we deboarded, and rushed to the baggage claim. By this point in the day, Patrick was totally exhausted. I was wearing my backpack on my back, his backpack on my chest, and I was pulling both of our carry on bags behind me. I got a number of funny looks, but they were not heavy at all. It must have been like when someone single handedly picks a car up off of a child. never in normal circumstances would it be possible, but I was walking on air. When I got to baggage claim, I told Patrick I would be right back. I stepped outside to she Denise with a huge smile on her face. She and I ran to each other and gave each other a huge hug. I managed to fight back tears, and she took my bags. I went inside and told Patrick to go ahead outside and get in the car, and I would get the bag. It never fails that my suitcase is the very last one to come down the conveyer belt, but that fire engine red bag was the first one to spill out. I snatch it up, and jump into the car.

I couldn't get out of the car fast enough when we got home. I run to the door, to find it locked. I rang the doorbell, and I hear the dogs freaking out. Cameron saw me through the window, and her face filled with pure joy (as did mine). "MOMMA!!!!" she squealed with delight. Momma opened the door, and Cameron leapt into my arms. "Cameron! I missed you so much! I am so glad to be home!" In the most precious little voice she said, "Momma, I love you," and she threw her arms around my neck and squeezed tightly. I had been waiting for three weeks for that. I kissed her all over her little face, and she erupted with laughter. I put her down on the ground, and Patrick was greeted with just as much enthusiasm. We were home. I had gotten my anniversary gift.

Over the course of this trip I realized that it has been nearly one year to the day from Patrick's first surgery and his brush with death. This journey started the Friday before Memorial Day of 2009 with a surgery we thought was to remove a large sinus polyp. The Tuesday following that, we got the call that it was cancer. Three surgeries, three months of radiation, and a round of chemo later; I found myself sitting beside Patrick's bedside on Tuesday crying , and afraid that he wouldn't make it through the night. One year to the day. I can hardly believe it has only been a year. Our family has been through more in a year than many people will face in a lifetime. Through prayer, faith, love, support, and shear determination we have pressed on. I have an entirely new appreciation for my family. Everyone knows that at some point you are going to die, and that it could be tomorrow. For most people, especially my age, this notion is tucked away. I had to look that hard reality square in the eyes as I held Patrick's hand as a machine did his breathing for him. I had to try and wrap my brain around the fact that he may never walk or talk again, and I was always thinking of Cameron, and what this all would mean for her. I can assure you that I have an entirely new appreciation for those that I love, and I will never take another moment together for granted. These last few weeks have been a complete nightmare, but by the grace of God we woke up from that nightmare and are facing a new day.

Tuesday, June 15, 2010

A very quick update....more to come later today

Hey everyone,

Let me start out by saying thank you so much for your prayers. To say the least this has been a crazy couple of weeks. Patrick is doing much MUCH better, and if things go as planned (knock on wood), we will get discharged tomorrow. It looks like his leak was repaired by the lumbar drain alone. Patrick has really been through it. One of his many doctors came in this morning during rounds, and she cut up with us for a while. After cracking a few jokes, she said with all seriousness "You are one lucky man. We almost lost you Tuesday night." One of his doctors in the critical care unit said that he had never seen anybody so close to death turn around so quickly. There is still some debate on the spinal fluid leak, but most of the doctors think that Patrick's meningitis was so bad and his brain swelling was so much that it tore a hole in the dura (the exterior lining of the brain) allowing the fluid to leak out. All the doctors agree that he was so lucky that he went to the ER when he did and that he was in here. I know without a doubt that if he had been in Columbia, Patrick would have died. Because of all of his treatment (three surgeries, radiation, and chemo), he is a very unique case. They have countless pages of medical records here, and were right on top of it. As soon as we get our walking papers, I'll be online getting a plane ticket. Our 6 year wedding anniversary is this Saturday, and I told Patrick the perfect gift will be him better and us on a plane home! This time 6 years ago I was picking out flowers and making final adjustments to my wedding gown. Who would have ever thought that just a few years later this is where our path would lead. It really makes you appreciate the big and the little things.

Again thank you all for your thoughts and prayers. It has helped us make it through. We look forward to being back.

Erin Stone

Wednesday, June 9, 2010

Was that the sound of chickens hatching?

I am writing this while sitting in the basement of the hospital washing clothes. The fact that we have been here long enough that I have to wash clothes says a lot. I had a flash back to my senior year of college when I realized that I had run out of clean underwear, and instead of washing clothes I just went and bought new ones. Yep, did that. I was planning on going to Krista's so I wouldn't have to buy more socks, but I found that they had washers and dryers downstairs. The smell of Tide is permeating the hallway, and the click-clack sound of someone's buttons in the dryer is the only thing I have heard in about an hour. I suppose a little change in scenery is good.

Patrick had a great Monday. He was up and walking around, and all of the doctors were pleased with his progress. Two doctors said that they would discharge him on Wednesday. My heart was filled with glee. I started pricing plane tickets home, and I even got Krista to come get me so I could buy Patrick a comfortable change of clothes to wear home. He will come home on IV antibiotics so they will leave his PICC line in his arm. I wanted to be sure that he was super comfortable on the plane, so I got him a great pair of athletic pants, and green shirt, and some comfy flip flops. I called Momma to double check his shoe size so that there would be no problems getting him out as soon as they gave us the word. Krista's mom, Donna, came and picked me up after she got off work. (She works very near to the hospital), and we went to their house where dinner was waiting. Roast, rice and gravy, squash, and sweet tea. Krista and I sat on the counters in the kitchen and talked while the squash was finishing up, and I felt closer and closer to home. After dinner, we went to Target, and then to Rayo's. Rayo's is an amazing bakery near their house, and Patrick must have gone there three times a week when he was out here. I got him some great little treats. A creme brule, a fresh fruit tart, and the sweetest little cake I have ever seen. It was mint chocolate, but it was shaped like a woman's summer hat. It was so neat, and Patrick said it tasted wonderful. I laid down in the horribly uncomfortable recliner, and I went to sleep knowing that tomorrow would be the last day before we were out of there.

I should know better than to count my chickens….

Tuesday morning Patrick told his doctors that his nose had been dripping. At first he thought it might have been sinus drainage, but it seemed pretty regular when he would stand up and walk. His nurse called his neurosurgeon who came by. He had Patrick stand up and bear down, and sure enough he started leaking. That dripping wasn't from his sinus, but rather from his brain. He somehow has sprung a spinal fluid leak, which is pretty serious business. Dr. Levine decided to put in a lumbar drain to take some of the fluid out of his spinal column so that hopefully the tear (wherever it is) will heal on it's own. If not (and I am knocking on wood this isn't the case), he will have to go back into the OR where they will have to find the leak and patch it. When I asked if that was something that they could do endoscopicly, the doctor said that would be hard to determine, but more than likely not. The thought of more surgery makes my heart sink. He has had enough surgery for two lifetimes. Pray that doesn't happen.

After they made the discovery, they decided to move him to the 8th floor, which is the neuro-unit. We had to pack up and move again. Down stairs - the wrong direction. We got there and got halfway settled when one of the neurosurgeons came by to put in the drain. He was a soft-spoken korean man in his late 30's. He and Patrick's night nurse Greg, prepped Patrick, and got all of the supplies out. The procedure involves putting an enormous needle in-between two vertebrae in his lower back, inserting a catheter, and attaching a collection bag to drain off 10 ccs of fluid per hour. I had lots of questions about how much fluid that was in relationship to the grand total, and how long it took for the body to replace it. He said that 10 ccs an hour is just a little more than the body produces, so the goal is to take just a little bit of fluid off to make room for the leak to heal. He will have to lay flat of his back for 5 days, and then they will remove the catheter, and keep him down for 24 more hours. After that they will sit him up and see if he is still leaking. If not, we will come home, if so, more surgery. Putting the needle in was extremely painful, for Patrick and me. They numbed the area with some lidocaine, but the deep tissue and ligaments can't be numbed because they are so deep. I held Patrick's hand, and I could tell the exact moment they hit the tissue. He nearly came off the bed. The doctor told him that it was very important to lay still, and that he knew it was very uncomfortable. "Uncomfortable" is doctor's speak for as painful as getting hot bamboo shoots shoved under your fingernails. He gave Patrick a little more lidocaine, and tried again. They had draped Patrick as though he was in surgery, and the mirror was behind him, so I could see most of everything. Patrick pulled his knees to his chest, and they started again. I told him to squeeze my hand just as tight as he needed to, that I was there for him, and he could do it. With every movement of the needle, Patrick squeezed harder and harder. I put my head down on his arm and kissed it gently. "You are doing great, and it will be over in just a little while. Think about Cameron and her singing her ABCs." Patrick closed his eyes, and squeezed harder then a few tears rolled down his face. By the time it was over my hand was nearly broken, and that' was ok with me. They threaded the catheter, and now there is nothing to do but wait. I tried to get a little work done, but with him on his back, that is going to be harder than ever. He can't sit up more than 15°s, so I am going to be waiting on him hand and foot. Good think he has pretty feet. :)

We are both ready to come home.

Monday, June 7, 2010

Eat what you can

With the weekend came more strides in the right direction. Patrick and I both seemed to get some real sleep Friday night. He was feeling better, his tests proved that he was getting better, and it put a smile on everyone's faces. Patrick ate a little breakfast, and then his respiratory therapist came in and gave him a breathing treatment. Those cause him to cough, and that is just what we want. After doing some of his breathing therapy, he got out of the bed and we walked around the nurse's station twice. All of the nurses commented on how happy they were to see him up and around. The staff here is so wonderful, and so encouraging. Krista came by for a while after lunch. She caught us up on what was going on with her, and she had us all cracking up with funny stories about life in the Lone Star state. It was so nice to see her. One of the hardest things about being out here is that our family is so far away. (1,047 miles to be exact) I can't tell you how many times I have wished that Becca was here bringing Cameron to check on us. How nice it would be to see Amie, Leigh Ann, and Momma cutting jokes about some of the crazy things that ended up putting me in the ER. Mr. Larry giving us a quick hello on the way to cut our grass. (Cutting grass is what he does. He IS the Yard Man.) Seeing some of my loved ones from church swinging by for a little break in the day. Having Patrick's parents here has been such a blessing. They make home feel a little less far away.

Patrick didn't eat much dinner, but he has been good about drinking lots of water. I asked Patrick if he needed anything, but he assured me he didn't, and went back to pushing his food around on his plate. He finally gave up on what he had ordered, and asked me to get him some cereal. I could hear my grandmother's voice come out of my mouth. "It's so good to see you eating. Can I get you anything else. It's ok, eat what you can and leave the rest." I called down to the kitchen for some Fruit Loops, and he did eat that.

They took him off of his IV fluids, and they only hook him up while he is having his infusions of antibiotics. The doctor came by and told us that Patrick's white blood count was going up so they were going to take him off of any steroids, which can boost your white count. The doctor said that he was a little concerned, but hopefully this would clear the issue.

The team of nurses that he had Saturday night was the same team that had to call the code on Patrick on Monday. After he left the ER, he was moved to the floor, and no sooner had he gotten here, he deteriorated and had to be put on a ventilator. One if his nurses told us more details of the night. I don't really think it was until that conversation that Patrick really realized how close he came to dying. After she left we talked about the days he doesn't remember, and he seemed even more shaken. As we settled in for the night, he said "Why don't you pull your chair over here by me." I moved the table that sat between Patrick's hospital bed and the recliner that I've been sleeping on. I put down the rails on his bed, laid down across the armrest, put my head beside him and started to doze. He took me by the hand, told me he loved me, and we went to sleep. As I laid there I realized that is the first time in quite the while that we haven't had Cameron between us. I miss that little sassy girl.

Patrick coughed off and on all night. Earth quaking coughs that any other time would make me feel bad, but those deep dark sounds were music to my ears. Those coughs were breaking up the pneumonia and subsequently breaking up this disaster. I stroked his horribly bruised arm while he caught his breath, and then it was back to sleep until the next quake.

Sunday morning Patrick woke up feeling worse. He said that his neck hurt and he was having a little trouble breathing. My heart sank. Neck pain is what started this. That coupled with the fact that his white count was going up had me in a little bit of a panic. I got up, felt his brow to see if he was running a fever, and got him a glass of water. They draw his blood for work up every morning around 5:00, so I was waiting quite impatiently to hear what his counts were. The nurses called the doctor on call, and they gave him a dose of morphine to stave off the pain in his neck. I thought we were past the point of morphine. When we got the word that his counts had gone from 22 to 16 I was able to take the first deep breath I had in several hours. The neck pain wasn't from infection, but rather it was from coughing. I hate that he was hurting, but three cheers for cough related neck pain. Patrick's parents spent the morning with us. Patrick's nurse Madlyn came in to take his blood sugar. Madlyn is probably in her 50s, and she is about as big around as she is tall. Her coffee skin highlights her bright smiling eyes. I remember her from the last two times we have been her, but I don't think she really remembers us. "Alright honey, I need to get your sugar." she said with a Southern draw. Patrick said, "Well come on in and pucker up." I nearly shot orange Fanta out of my nose. She laughed and fired back with a joke of her own. About 11:00, she came in and asked Mr. Bill, Mrs. Noonie, and I to leave because she needed to give Patrick a bath. He gave her a big grin and said "Come on in!" I told him to be sure to keep his sugar to himself, and I laughed the whole way to the coffee shop downstairs. Mr. Bill and I had white mochas, and Mrs. Noonie had a caramel coffee. We talked about how amazed we were with how wonderful Patrick was doing. I thanked them for coming out with me. The three of us basked in the prayers that have been answered in our family. We finished our coffee and went back upstairs to tease Patrick about cheating on me with an older woman.

They left to head to the airport a little after 1:00. I hugged them both so tightly, kissed them on the cheek, and promised that I would bring their baby home safe and healthy. No matter if you are 6 or 36 or 106; you are alway your parents' baby. We all held hands and prayed. Love, joy, and relief filled the room until it was tangible. It was like a warm blanket that I was more than happy to wrap up into. We all got a little misty eyed, hugged each other again, and then they hit the road. I am insanely envious. How much I wish we were going to be on that plane home. Home is where the heart is, and mine more than likely has one arm around her glow worm right now.

Mid-afternoon Patrick was feeling better, so he got up and we went for a few more laps around the nurses' desk. When we got back to the room, Patrick asked if I would go get a wheelchair so we could go downstairs. I tracked one down in the lobby, and took his chariot upstairs. We got a quick cheer from one of the nurses as we made our way down the hall. We went to the first floor to the main lobby and outside to get some fresh air. As I pushed him past a small rose garden I realized that this was the first time I have been out of the building since I got here. It was so hot outside, and the air was heavy with moisture. In spite of the oppressive heat, it was nice to feel the sun.

We walked into the far entrance into the lobby called "The Fountain." It is a very open space with lots of windows, a grand piano that always has a player, and a beautiful fountain. We sat down and watched the water fall for a while listening to the rich sounds of the massive Stienway being played by a young doctor with raven black hair. She played with such longing that it just pulled me in. As we sat, a family walked by. The mother talked to her daughter who was about 6 years old, and pushed a stroller with a pudgy faced little girl inside. She looked a little younger than Cameron. She had on a cute little pink hat, footie pajamas and a little jacket. She had a tube going up her nose and IVs running into a port under her PJs. She and her sister were begging their daddy for change to toss into the fountain. Her dad pushed an IV stand and dug into his pockets much to slowly to suite the two little girls. You could see the little girl's bald head peeking out from underneath her little plaid hat as she pulled against the seatbelt in her stroller. Her little round face filled with shear elation when her penny broke the surface of the water. Her sister cheered her on, and stuck her hand back to her dad for more change. Patrick squeezed my hand tightly and I started to brim with tears. With every cent they gleefully threw in, I made wishes. I wished that this was all a horrible dream for them. That they wake up tomorrow and their little girl was as healthy as she was happy. I wished we were home so I could kiss Cameron all over and thank God even more for her. I wish…

"Eat what you can and leave the rest." What a montra that has become. When I was a little girl, like all kids, we were expected to eat what was on our plate. Grandma never fussed if we didn't make it all the way through our green beans or rice. She didn't make us clean our plate before we could grab a tea cake on the way outside to climb in crepe myrtle trees in her yard. She always made sure we ate enough, but never more. Since Patrick was diagnosed last year, I have had to come to terms with the fact that sometimes you can work yourself to exhaustion, and no matter what you do, you just cant get it all done. That emotions can flood in until you feel like you are digging a hole in water. I feel like that more than ever. I need to carry the household from day to day so that Patrick can spend his time getting better and not worrying about the daily grind of dinner, dishes, laundry, and the like. I come home, start dinner, unload the dishwasher, pick up Cameron's trail of crayons, set the table, eat, and straighten up the kitchen all before kicking off my high heels. That mountain of laundry will live to see another day - maybe the weekend they will get washed. Wait, didn't I say that last weekend? I see people like that little girl who is in the fight of her life, and she isn't old enough to speak in a sentence. I see Patrick's body weak and horribly bruised knowing that there is nothing I can do to fix it. I try and keep Grandma's voice in my head. I can see her right now standing in the kitchen stirring away. "Eat what you can baby and leave the rest."

Saturday, June 5, 2010

Moving closer to the door

Friday brought great progress. For the first time since we arrived in Houston, Patrick seemed like himself. He woke up with absolutely no memory of the previous week. He said that the last thing he remembered was dropping his wallet when he got to the ER, and someone handing it back to him. We gave him the run down of the weeks "adventure." He asked a few questions that to us seemed kind of funny. "So am I going to need to reschedule my appointments for my MRI and to meet with Dr. Levine and Dr. Kupferman?" We all laughed a little, and let him know that he had seem them both numerous times since he checked in, and he had already had a CT scan, MRI, x-rays, and lots of blood work. He seemed a little skeptical which was pretty funny too. We told him that at one point when asked what year it was he missed it by a mile, and that he had been sitting pretty close to death's door for a few days. I reminded him that if he ever scared me like that again; he would need a doctor :) I tried to get him whatever he needed or wanted, and when he jokingly called me a nag, I knew he was back.

A little before lunch the nurses got Patrick up into a chair and he sat up for about two hours. Unlike Thursday, he didn't fall asleep sitting straight up. He watched a little TV, and then they moved him back to the bed. Mrs. Noonie, Mr. Bill, and I went to grab some lunch and let Patrick get some sleep.

After we ate, we sat in the waiting room for a while so not to disturb him. There were several families that we have been sitting with in the waiting room this week. The patients that they were there with were not doing well at all. Over the last week we have laughed together, cried together, prayed together, and just shot the breeze together. We celebrated with a family who's dad was in kidney failure due to his cancer when his body started producing urine. I sat and held the hand of a woman who's daughter was only 44 and not expected to make it. The daughter was diagnosed with cancer a month ago, and there wasn't much that the doctors could do for her. They wanted to take her home so she could spend her last little while with her 17 year old son and family, but she was to sick to. CCU is where success is measured in urine output, and O2 saturation. Where odds are can be counted in white counts and milligrams of pain meds. It is truly where joy and sorrow meet.

Late Friday evening we hit a huge milestone - moving to a room on the floor. "Moving on up. To the [11th floor]." The nurses removed is perriffial IV lines, pulled off his numerous electronic monitors, and sent us to the floor. Four floors up and one step closer to home.

Friday, June 4, 2010

A quick update...

Patrick's room has been in "isolation" since Wednesday morning because of the fact that he has meningitis. In order to visit him you have to dress in a gown, gloves, and facial mask before entering the room. The door is covered with red and white tape and numerous signs screaming the severity of his illness. It looks like a crime scene. For the last week he hasn't seen much more than blue masks and eyes. I have slept in his room since I got here, and even totally lucid and uninhibited by pharmaceuticals, waking up to nothing but eyes is horrifying. He doesn't remember anything between Monday afternoon and Thursday night, so hopefully he won't have crazy flashbacks of a sea of yellow gown clad, blue latex handed creatures. I know I hope I don't.

When the doctors made their first bout of rounds and evaluated Patrick Thursday morning they were very pleased with what they found. He was able to speak a little, and he could move his left hand. He had a little bit of a far away look in his eyes, but he would answer you with one or two words when you asked him things and he followed commands. His left side was much weaker than his right, but it was HUGE progress. About mid-morning they took him off of the CPAP and the nurses sat him up in a chair for a while. Mr. Bill and sat in the room with him while he sat. Patrick gazed at the TV in spite of the fact that there was no sound with this long far away look on his face, and after just a little while he started to get weak. Mr. Bill and I would call his name and keep him awake. He sat up for nearly two hours. I rubbed his head, and he rested it in my hand and fell asleep. I waved a nurse into his room, and they put him back to bed. They put him back on the CPAP machine, and he slept like a log for the next few hours. While he slept, Mr. Bill, Mrs. Noonie and I went and grabbed a bite to eat.

After lunch, we headed back upstairs and sat with Patrick. Most of the time he slept, and every so often he would open his eyes. He didn't really say much after his adventure of sitting in his chair. That just shows how sick he has been. Just sitting up for a few hours, put him in the bed to tired to talk for the rest of the day. He was able to take his CPAP off and use just the oxygen support from the high flow nasal canula for a few hours before he went to bed. As the night got later he seemed a little more like himself. I took out my cell phone right before he went to bed, and showed him a few pictures that Momma sent me of Cameron and a video of her singing "Old McDonald." That really seemed to perk him up, and then at 11:00 they put the mask back on, and he was off to sleep. I settled down in my cot, pulled the covers over me and slept harder than I have in a week. I was starting to see the Patrick I knew, and that put so much peace in my heart. I could finally rest (somewhat) at ease. I know that Friday will bring even more good news.

Thursday, June 3, 2010

A few steps forward and a few steps back

Wednesday was kind of crazy. We got some information on the what's but not really the why's. And let me begin by apologizing if this is a completely disjointed mess of an explanation, but a completely disjointed mess is about how I feel. Patrick was taken off of the ventilator yesterday about mid-day, and was breathing on his own with just a little oxygen support though a small nasal canula. He had pneumonia in the bottom of his left lung, but seemed to be holding his own.

His blood work came back and the official word is that, in addition to the pneumonia, he has spinal meningitis and a MERSA infection in his lungs. His white cell count were extremely high. It got up to 2,700. (5 - 10 is normal) He was battling a fever which got as high as 103.5. They have been able to keep the fever down with Tylenol and is on several insanely strong antibiotics for his infections.

Last night they had to go up on his oxogen to a high flow nasal canula. They test his blood gasses every few hours to see how much oxogen he is getting into his system, and the counts are low. They draw the blood from an artery rather than a vein, and the blood should be bright red, and his was a dark burgundy. His lungs were so inflamed that he is having a hard time keeping them open on his own enough to get all of the oxogen he needs, so this morning they put him on a CPAP machine. He is still doing all the breathing, but the machine keeps pressure in his lungs so he doesn't have to work so hard.

They did a chest x-ray this morning around 3:00am, and his pneumonia is getting worse. It is now in both lungs. The respiratory therapist said that it is because he hasn't been breathing deeply enough. He said that between the CPAP and the antibiotics, that should start to clear up soon.

His meningitis has had some very frighting side effects. He has been so in and out of awareness, and thank the Lord he stayed awake for longer and longer periods of time. He hasn't been able to use his left hand or look to the left. If you asked him to squeeze your hand, he just couldn't do it. I would ask him is that as hard as you can, and he would nod his head, and he thought he was squeezing it. I would tell him, "Squeeze it just as tight as you can baby." And at the most he would move a finger. That was really hard. I would tell him "Good job baby," and then check his right hand which he could squeeze with no trouble. Lastly, he hasn't been able to talk. You can look in his eyes and see that all the lights were on, and the sheer frustration on his face was heartbreaking. He would nod yes and no, and sometimes he would say yes or no, but that was it. You could see the devastation and fear, and I could hardly stand it. I talked to him, sang, and did all I could to keep his spirits up.

The good news is that things are starting to improve. His white counts are starting to come down. Last night when I finally laid down about 12:30, I told him "I love you." and he whispered back "I love you." I nearly lost it. I kissed him on the head, got out of eye shot, and BAWLED. This morning before I was kicked out of the room at 6:00, he wasn't able to talk, but there is so much joy in my heart that as he is getting better, he can! We just got a report from one of his doctors, and he said that Patrick was talking with him!!!!!! Praise the Lord. The CPAP must really be just the right thing. His white counts were still going down, and what the CCU doctors thought was brain swelling was scar tissue from his surgery! The meningitis was causing brain swelling, but at least it wasn't as bad as first thought. The infection is still bad, but not what they initially thought. His color is better, and he is staying awake longer and longer.

Keep praying, and I'll let you know as soon as I have any more news.

Wednesday, June 2, 2010

A shock

Hey everyone,

For those of you that haven't heard, I had to fly out to TX yesterday because Patrick was put into the critical care unit at MD Anderson. He came out here for just a routunie follow up with his surgeons, and about 4:30pm he called me and said that he thought he had pulled a muscle in his neck and wanted me to email his doctor about calling in something for him. I told him to lay down and rest, and I would take care of it. I called him about 5:00, and he sounded like he was really hurting so I told him that I would figure out who & how to get his doctor paged. Once I got that taken care of, I called him back to tell him to be expecting his call, and I couldn't get him on the phone. I called and called for about two hours on his cell and in his hotel room. I thought "Well maybe he went to grab something to eat and forgot his cell," but after two hours, I called the hotel, and asked them to send someone up and go into his room and check on him. They called me back and said that there wasn't anyone in the room. I got pretty scared, so I called the ER and there he was. They had given him some pain meds and a muscle relaxer for his neck, but within a few hours they couldn't keep him awake, and he was not responding. At about 12:30am yesterday they moved him to a room to watch him, and by 4:00 he was in the CCU in a breathing tube. They don't know what is wrong. I immediately got a plane ticket, and flew out. Patrick's mom and dad came with me. Our flight from Florence to Charlotte was delayed and we missed our connector to Houston. I RAN across the airport (it was at least a mile from the terminal we landed to the terminal we needed to board). By the time I got there I was pouring sweat and panting like a dog. We missed our plane, and the girl at the counter said that there were no more flights to Houston. I burst into tears and told her that my husband was in ICU and I had to get to TX. She started to crunch away on her computer and found a flight from Newark, NJ to Houston. The flight to NJ was boarding RIGHT BESIDE US! Then the computer system crashed, and they couldn't get us in the system. Michelle, the precious girl at the counter we on the phone with one hand, clicking away with the other. Her boss was over her shoulder saying "We are not going to hold this plane for stand-by passengers." She looked at me and said "I will get you to TX honey." We watched the people boarding the plane, and they were like little grains of sand in an hour glass. I knew when that line ran out, we were out of luck. She got Mr. Bill on first, and then Mrs. Noonie. I told them to get on the plane and go. If I had to catch up I would. Michelle got my ticket from NJ to Houston printed, but couldn't get me in the system for the flight from Charlotte to Newark. She finally said "14E is your seat. Get on the plane, and I'll work out the details." I don't know if I ever was officially on that flight, but I didn't care. Take that TSA. I started to cry, gave her a huge hug and a kiss on the cheek. She got choked up and told me she would be praying for us.

We got to NJ and I realized that all I had eaten all day was half of a sandwich (thanks Ellis. It was great). We grabbed a quick bite, and boarded the plane. The flight was 4 hours or so. I was sitting beside this really interesting man, and we talked for about an hour or so. He asked about my trip, and we talked about Patrick. It was nice to unload a little after the insane course of the day. We exchanged cards, and he asked that I keep in touch.

We got to Houston at midnight (so 1:00am South Carolina time) and I felt like a wrung out dish rag. Krista picked us up, and took us to the hotel. I was worried that they wouldn't let us get the room keys since I didn't check in, but fortunately they were very nice. I sent Mr. Bill and Mrs. Noonie up to the room, and I headed off to see Patrick.

I got to his room about 1:00am. He was still very sedated, and intubated. They said that there hasn't been any changes. He looked OK. He was had a central line, an IV, and the breathing tubes. He was in restraints to keep his hands down. When he wakes up some he gets very agitated and tries to pull out his tubes. He doesn't respond to commands well, but he is aware enough to know he doesn't like having lots of tubing running here, there and everywhere. His white counts are way up which is a sign of infection (they are between the high 30s to mid 40s and normal is around 10). His CT and MRI didn't show any masses or bleeding in his brain. When they said "Mrs. Stone, his test results show that he hasn't had a stroke." I thought I would puke. His EKG showed that his heart was doing fine. They did an LP to test his spinal fluid, and those results are not in yet. They tried to take him off the sedation earlier in the day, but he kept trying to pull the tubes out, so they had to put him back to sleep. You could tell when the meds were starting to wear off because he would squirm all over the bed and furrow his brow like he was in a lot of pain. I pulled a chair up to his bedside, held his hand, laid my head down on his bed, and did my best to get a little sleep. When he would get upset I would sing to him, and his heart rate seemed to settle. Around 4:45am I moved over to the cot and laid down until they kicked me out a little before 7:00. I was sleeping so hard I think they forgot I was in there. As I was leaving his room this morning, they had taken him down some off of his sedation meds, and he opened his eyes a little and starting getting pretty upset. I told him that I was there. I don't know if he knew it or not, but I hope so. He looked over at me. He was drunk as a skunk, but I'll take "no change" over "deteriorating" any day of the week. I am trying my best to keep it together. I had a great little nurse last night, and she gave me a big hug when I got there and I cried some. The chaplain came by, and we chatted for a while. Patrick's mom and dad haven't come over from the hotel yet, but I am expecting them anytime. I am so overwhelmed with emotions I can hardly stand it. At one point last night, I had this wash of the overwhelming urge to just run. Don't know where, but that flight or fight hit me I guess. I hope to have more information in a few hours. I wish I had more info. The not knowing is gut wrenching. It is just so bizzar. I mean he went from fine to on a ventilator with no idea why in 6(ish) hours. I can't use my cell phone in the waiting room, so if you need me shoot me an email. Please keep the prayers coming.