Monday, February 28, 2011

The Journey For Our Oldest

Naturally, our oldest has been more affected than our youngest during our journey. Although she is 26 months old, she understands so much and has dealt with everything in her own way. Before she knew anything about what was going on, she caught me crying. I did my best to contain myself, but one afternoon I let my mind get the best of me. At the time we knew very little about how difficult our journey would be or how it would end. She saw my tears and came up to me, wrapped her little arms around my neck and said, 'it will be okay mommy.' She kept repeating herself until she saw I stopped the waterworks.

Patrick first told her what was going on the day before the surgery. She was told that daddy had an owie on his tongue and that he would be going to the hospital so the doctors could fix it. After repeating this story three times, she had a general idea of what was going to happen. The night before the surgery, my older sister picked her up for a sleepover. It was a sad moment. Patrick was upset because that was the last time he would see her before the surgery. Her leaving meant no more last minute cuddles or snuggles or chances to say 'I love you.' It was quiet in the house.

The following morning she was brought back home to stay with my oldest sister and our youngest. As the days passed, we tried our best to keep the girls on their normal schedule, but of course a small change here and there was bound to happen. I think this coupled with me being gone so much was a bit more than she could handle. She started doing things out of the ordinary like spitting and hitting. She was far more whiney than ever before and craved my attention whether I was present or not. As the week went on the negative behaviors increased and it was very apparent that she needed me. It became very difficult for me. I felt very torn. I wanted to be at the hospital for Patrick as much as possible and I also wanted to be there for my girls. I know that neither of them will remember this journey, but being present and in the moment is something I really strive for.

The Friday Patrick was released from the hospital and we headed home my aunt was there with the girls. I called her to let her know of the plan as I wasn't expecting to be home so early. She was headed out the door to take the girls on a walk. It was perfect timing. I wasn't sure it was a good idea for the girls to be there when we first arrived. I didn't want our oldest to run and jump on daddy. I didn't want her to cling to me and me not be able to get Patrick settled. Soon after they returned and I took her to the living room to see her daddy. She was hesitant, kept her distance and was unsure. She didn't stay long.

Each day our oldest would get a little closer to her daddy. Each day she would talk to him a little more. As the days passed she became more comfortable and started to cuddle with him again. As she spent more time with us, and was able to get back on her schedule, the negative behaviors started to decrease.

Now, after weeks have passed if her daddy is not in the room she'll ask where he is. Before I can answer she'll ask, 'Is daddy at the hospital?' If I ask if she wants to go to her auntie's house to play with her cousin she replies, 'so you can take daddy to the doctor?' Her mind is a steel trap. She doesn't forget a thing. On any given day you'll find our oldest using the plastic rim of a net as a stethoscope. She'll listen to your heart and say, 'lub dub, lub dub.' She likes to take your temperature and listen to your lungs too. And the sweetest thing of all is when she asks her daddy if she can kiss his owies.

Wednesday, February 23, 2011

Our Journey in Pictures

This post is our journey in pictures. If you have a sensitive stomach, I don't recommend looking. Although, it's much easier to see these pictures than it was experiencing it in real life. Many of these photos were taken with the camera on my phone, most often because Patrick wanted to see what he looked like or what his scars looked like. On the morning after his surgery, he desperately wanted a mirror. All I had to offer was a compact, which was extremely small, so we took photos with the cameras on our phones.

I have experienced a lot of firsts over the past several weeks. One of them was seeing Patrick without facial hair. We'll be married five years in July and I've not once seen him without it. Here he is waiting in the Day Surgery room. This is where he was given an IV. This room was where each doctor met with us before the surgery took place. This was where the chaplain prayed with us. This is the room where reality really sank in. This was where I said, 'I love you' before he was wheeled away.
After the eight and a half hour surgery and emergency tracheotomy Patrick was wheeled to the ICU. The Intensive Care Unit is where I first saw him. It's where he laid with an extremely swollen tongue, a ventilator, tubes, wires, bandages, blood, a feeding tube and what seemed like everything else you'd find in a hospital. I sat with him for several minutes and held his hand. This is where I shed a few tears out of sadness. When I took this picture I told him that I was doing it for him, not that he heard me, but oddly, it made it less awkward. This is where he tried to wake up. This is where he was given a bolus to force him to rest. This is where he lay all night until I was able to see him again.
While still in the ICU he got up and walked around and sat in the recliner in the room. The recliner is where he sat trying to stay awake because sleep meant he might choke on another blood clot. The recliner is where he wrote 'pass out,' which made me dart out the glass doors to get his nurse.
During Patrick's operation, they inserted an NG (feeding) tube. There is a weight on the end which helps it find its way down to the stomach. Normally, they do not stitch them in, but for Patrick they did. Here is his tongue one day after the surgery. You can clearly see the flap and stitches which by the way are still in his mouth to this day.
The massive incision on Patrick's neck that strings from below his left ear to the other side was stitched with numerous sutures inside and out. There was a drain placed in his neck which led to a Jackson Pratt (a plastic bulb) which was emptied every few hours or so.
Once awake and breathing on his own, a warm air humidifier supplied air to the trach sight. The tube is held there by a mask and rubber band type apparatus. Due to the constant stream of blood from the tracheotomy, we tried to keep a washcloth there at all times. Many times a day I would change it out and wipe his chest with a warm cloth to remove any dried blood or pool of blood that had settled. Due to surgery, Patrick had a lot of gunk in his lungs. Gunk his lungs didn't want. He would cough and gasp for air. He, or I, or my sister would use a suction tube to help him clear the blood or clot.
After two days in the ICU, Patrick was to be moved to a room on a floor. He was helped to the recliner while the new bed was wheeled in. After being awake for so long out of fear and having so much medication on board he immediately conked out once helped onto the new bed.
The Thursday following surgery Dr. C. and a resident changed out the trach for a smaller, metal version. This version allowed him to talk and breath easier. After they stepped down the trach, the hole required two stitches. This is the trach they plugged for a while in the evening when I wasn't there. This is the trach that they plugged all night which led Patrick to feel so much better that he started joking and smiling. Once they put the plug he he said, 'I can breath. Now that's blog worthy.'
Patrick's arm was the donor site for the flap that was used to reconstruct his tongue. Here is what it looked like four days post operation. The mark in the lower left of his arm is where another drain was placed.
Here is the donor sight 11 days post operation. The skin is still see through like a window. You can see the tendons in Patrick's arm. We are told the line trailing up his arm will slowly disappear. His arm is still causing a lot of discomfort due to tight tendons and bothered nerves.
Here is the trach hole 12 or so days post surgery. It seemed to be closed then opened again after the stitches were removed, then again after he slept on his side last night. We are really hoping it closes for good soon as he does not want any other stitches.
The skin graft taken from his left leg was used to cover the donor site on his arm. It has since scabbed over and sloughed off. All the remains now is a red square. In time it will heal, but will remain discolored.
Patrick's tongue is healing nicely. There have been a few concerning moments after eating something or accidentally biting his tongue. The swelling has significantly gone down. His speech is becoming more clear, but he still has a lisp. Immediately following surgery and for several days after the flap appeared pink in color. Now it has taken on a white tone.

The incision on his neck (taken yesterday), has improved so much and each day looks better.

And the journey continues...

Monday, February 21, 2011

Two Weeks Post Operation

It's hard to believe it's been two weeks since Patrick had his surgery. Just two weeks ago, I said, 'I love you' and he was off to the operating room. Just two weeks ago I saw him in the ICU post operation engulfed in wires and tubes. Now, here we are two weeks into recovery and things are going fairly well.

Patrick is no longer taking any pain medication be it narcotics or over-the-counter. He hasn't for several days now. He is still taking the recommended aspirin to help with blood pressure and to prevent blood clots.

There are several main obstacles Patrick deals with on a daily basis. Not being able to use his left arm is one of them. He has limited mobility due to tight tendons and sharp pains, or 'fireworks' as he refers to them, shooting up his arm. The scar trailing up his arm will drastically decrease over the next few weeks. The flap removal site, now covered by the skin graft will start to thicken so the tendons won't be visible. The skin will always be discolored. Just a few more days, and Patrick can take the wrapping off. He is planning on purchasing some sort of sleeve or wrist guard to wear to protect his arm while at work.

The hole where the trach was is still slightly open. It seemed to be closing and had no air passing through, then the two stitches were removed and Patrick can hear some gurgling, bubble noises. We are hoping it continues to close and heal as he does not want anymore stitching. Once healed, Dr.V. offered to fix it if the trach scar is bothersome when turning his head or talking.

As I've mentioned before the scar on Patrick's neck continues to heal nicely. I've noticed a big difference since the stitches were removed a week ago. It has and will continue to lay down and over the next year will become part of the crease in his neck and rather unnoticeable to strangers. It's difficult for Patrick to hold his head straight and level. He said it feels like they detached the muscles in his neck and reattached them as they are tighter which makes it difficult to not tilt his head to the left bit. I'm sure that coupled with the tightness of the incision are what bother him. He jokingly calls himself Quasimodo.

Eating is still a slow and steady race. Patrick regretfully tried a cheeseburger several days ago. It went down fine, but seemed to irritate his throat. After several more days of consuming soft foods, he tried pizza. It took a half hour to eat, left some concern about the stitches in his tongue, but made it down the chute. He's down 11 pounds, but as he continues to be more brave with eating, we hope he's hit the bottom of weight loss.

Patrick is experiencing a lot of numbness in his face, neck, ear, tongue and thumb. Although, it is completely normal, it is rather annoying and can be bothersome when doing things like shaving.

The flap attached to Patrick's tongue is doing well. A few of the stitches have come out leaving a bit a crevasse is some places. There is a spot on the bottom of his tongue that has grown a few hairs. We'll be looking into permanent hair removal in the future, but for now it's just part of the journey.

Have I left anything out? Any questions?

Stay tuned, the next post will contain the pictures of our journey thus far.

Thursday, February 17, 2011

Post-Op Appointments

Patrick had a post surgery appointment with Dr. D. on Monday. We left the girls home with my mom and made the trip to the big city. After checking in and a short wait, Patrick was in the examination chair. Dr. C. came in and took a look in Patrick's mouth and mentioned that everything looked good. He also said that the swelling would continue to go down then he removed the stitches in Patrick's neck. Just a few short minutes later and Dr. D. came in and did a quick scan of Patrick's tongue too. He said he was pleased with how everything was going and that they had talked about Patrick's case over lunch today. The cancer board all agreed that there was no need to continue with any other treatment. Another confirmation that chemotherapy and radiation are not necessary. Do we know if there are any cancer cells left in Patrick's body? Sadly, no. What we do know is that for now the stage two cancer we've been fighting since the diagnosis on January 14th seems to be at bay. I wish I could record Dr. D. as he speaks to us. The way he phrases things is perfect. Dr. D. said that over the next several years Patrick will be getting regular scans be an MRI, CT, or PET scan. At first every few months then every six months, then once a year. We will be going back in two more weeks for another post-op appointment.

Today, we saw Dr. V. who was also pleased with the way things are going. He lowered his surgical glasses, grabbed a light, and took a look at Patrick's tongue. Once done examining the flap, he removed the bandage from Patrick's arm and took a look at the donor site. He poked and prodded a bit and told us that the scar trailing up his arm would greatly improve over the next few weeks. Dr. V. also mentioned that although the flap site would remain discolored it would heal up nicely. There were a few stitches placed in Patrick's neck when they stepped the trach down to the smaller, metal version. The stitches were not ready to come out when we were at Dr. D.'s on Monday, so Dr. V. took them out. He mentioned that the scar on Patrick's neck would take about six to eight weeks to start to smooth out and lay down. Lastly, Dr. V. and his PA took a few pictures of Patrick's tongue. I'm not sure if the pictures were for his personal library or for the new patient of Dr. D.'s that was recently diagnosed and will be traveling the same journey as Patrick. My heart goes out to him.

We left with another follow-up appointment and ventured up the freeway to the hospital where Patrick works. We were surrounded by his imaging family as he told of surgery and recovery. They were all so pleased to see him and I was proud to stand there as he described his battle. He felt the support and looks forward to being back at work. Depending on how his recovery goes, Patrick will tentatively be heading back to work after the first week of March. It seemed like all we were doing before was waiting, and now it seems as though time is flying by. I'm grateful for that as the faster time flies, the faster we are done with this journey.

Wednesday, February 16, 2011


Since the moment we learned of this journey, we have been showered with love and support. Emails, comments on the blog, texts, Facebook posts, and phone calls expressing concern and encouragement have poured in. Thank-you. Supportive family, friends, acquaintances, coworkers, and people we've never met opened their wallets and gave donations and gift cards to grocery stores, gas stations and restaurants. Thank-you. A prayer quilt was delivered and we were added to numerous prayer lists. Thank-you. Three trailers of yard debris from a recent pruning of a large tree in our yard have been taken away. Thank-you. Several meals were made and delivered. Thank-you. Groceries have been bought, and our house was cleaned. Thank-you. A sandwich was delivered to me on surgery day, books and magazines too. Thank-you. Childcare, laundry, and errands were all taken care of without question. So much done for us in our time of need. Thank-you. A cherry pie (his favorite) was made and delivered to Patrick before surgery. Thank-you. An oral cancer book was sent by another survivor, a man we feel like we know but have never met. A second book about fighting cancer was mailed to Patrick. Thank-you. Balloons and flowers were delivered to the hospital. Thank-you. A continuous flow of cards arrive in the mail. Thank-you. All of you have been so generous, helpful, kind, loving and supportive. Thank-you doesn't begin to express our gratitude. As we continue on our journey of recovery, thank-you for helping guide and support us.

Monday, February 14, 2011

Brain Dump - Third Edition

Before I was blessed enough to become a stay at home mom, I was a fourth grade teacher. I would often tell my students to open their journal and 'brain dump.' The reasoning was that by writing down whatever came to their mind they could become inspired to write about something, or clear their mind for another great idea to enter. As I process all of this information, I feel the need to brain dump, to get my thoughts out on paper (or rather the computer screen). I need to clear some space.

As I reflect on the past week, I can't help but wonder how on Earth I made it through. I know I had a marvelous support team, but elephant after elephant just kept sitting on my chest. I wasn't sure I was going to be able to get up. Being exhausted, physically and emotionally, led me to do a few things out of the ordinary. In a rush to get to the hospital one afternoon, I slid on two shoes. Albeit, very similar, I fount myself walking into the hospital on surgery day with one navy shoe and one black with holes on the toe. Aside from the slight height difference, I didn't care a bit. My mind was in a different place. Also on surgery day, I brought my breast pump, as to keep up with my youngest. I asked the nurse at the Day Surgery counter if there were a room I could use. She made a call and sent me up to Labor and Delivery. My sister and I headed upstairs. Another nurse directed us to the lactation department. We walked down yet another long hallway only to find the lactation department a ghost town. Seriously, people, all I needed was a small room and an electrical outlet for ten minutes. I gave up, plopped myself down in one of the lobbies, found a plug-in, and got the job done. I was beyond caring about modesty.

While making several trips to the hospital over the course of five days, I frequently listened to the radio to help drown out the noise in my head. A local radio station was doing a fundraiser for the Children's Cancer Association (CCA) for the last two days of my commute. I tried to listen when I could, but would find myself with tears streaming down, feeling overwhelmed. My older sister had mentioned to me while waiting on surgery day, that although this journey is horrible, awful, and just plain sucks, it would be far worse if we had to travel this journey for one our our babes. I agreed. The CCA has inspired a need and want to help in me. Once my life is settled, I am going to seek out a way to give back. We have been showered with love and support and I want to give the same. If not the CCA, then another cancer fighting organization, support group, patient, something.

While in the hospital with Patrick we received news that one of Patrick's best friend's wife had learned she has skin cancer. It's an epidemic and pandemic. It's a horrible disease that needs a cure. Before our diagnosis, cancer was not so prominent in our lives and we took for granted our health and monotonous journey. Phone conversations with family and friends reveal how many people are really affected by cancer. It doesn't seem right.

I am exhausted. My youngest is still sick and through all the shuffle last week, she did not get her probiotics. Our children have belly issues and probiotics have rescued us through the years. She has been up, aside from a few hours, each night with belly pain. She didn't want to be set down, sleeping or awake. She'd arch her back in pain. Between that and coughing, it was a disaster. It is a disaster. Now, three days back on schedule, she will allow me to lay her down so she can put herself to sleep once again. I think we are back on the right track, but it hasn't been fun getting there. I'm very sleep deprived, irregardless of the naps I'm able to get in the afternoons thanks to my sisters.

Patrick and I have lost seven pounds each over the last week. My weight loss was needed but unintentional. It's difficult to maintain your eating schedule when you're sitting with someone who can't. I didn't want to be all out rude and chomp down on a delicious sandwich in front of him. Early on when I'd leave for a meal break, he'd be upset that I was gone so long. Patrick's doing well with eating, considering. He's moved on from liquids and soft foods to more solids and regular foods. He's becoming more adventurous in his eating and has tried oatmeal, scrambled eggs, homemade macaroni and cheese, and minced bits of chicken. No where to go but up from here. Once he's back full force, I'll get him back to his pre-surgery weight. It's my mission.

It's odd how our relationship changed, Patrick and I. We were husband and wife and for the last week became nurse and patient. When we said our vows nearly five years ago, I said I'd be there for better or for worse. I was there for the worst. I became his second nurse. Other than pushing meds in the hospital, I did everything else. Once home, I took on even that job. I'm happy to do it, but it's been tough for Patrick to rely on me for so much. He's mentioned he feels like a baby. Showering, eating, changing bandages, coughing, using the bathroom, dressing, everything requires help. Each day he gains a little more independence, and I become more of a wife than a nurse.

I've been wearing Patrick's wedding ring since the night before surgery and will continue to wear it until he's able to again. His left arm is bandaged from the flap removal site and he has many sharp pains running in his arm and fingers throughout the day.

Patrick's speech is a bit slurred, as expected. He was able to keep the tip of his tongue which helps tremendously, but there is a rather large bump in the back which makes it difficult to speak clearly and maneuver food while chewing. Dr. C. told us today that his tongue is still a bit swollen and the bump should continue to go down. Patrick also has a flap of skin near the front of his tongue that is white in color and was a bit concerning. We were told it would slough off eventually.

I have a lot more in my brian, but it will be saved for another time.

Saturday, February 12, 2011

Post Surgery - Day Three and Four

When I arrived at the hospital, Patrick was resting, but soon woke up and it was very apparent that he was depressed and frustrated. He was saying things that you only hear your spouse say in nightmares. I was saddened and frustrated myself. It seemed like we needed to get a better handle on his medication. The medication plan that was working well the night before was no longer working at all. I spoke with his nurse and told her to call the doctor because something needed to change. We would go through a cycle. He would be asleep, wake up, be depressed, get medication, then the cycle would start all over again. Once we got a handle on things, the tension in the room subsided, and Patrick spent most of the day getting some much needed rest.

Patrick was told that morning that Dr. C. (Dr. D.'s Fellow) would come in and change out his trach for a smaller version. One that would allow him to talk. Around 4 p.m. Dr. C. and a resident came in. They explained what the procedure would be like and set up their supplies. Once they were ready, they asked me to leave the room. It was probably better that way. I knew he was in good hands. Dr. C. was the one who intubated Patrick post operation. I sat in a chair outside the room. I heard a bit of coughing then what sounded like a robotic voice. Thrilling. After they cleaned Patrick and the room up a bit, he asked for me to come back in. I saw the relief he had immediately. Some of the anxiety he had about not being able to breath well had left and now he could talk, so a second piece to the anxiety was diminishing.

Dr. C. told us that a plug would be ordered and they would plug his trach for ten minute increments and see how he handled things. Once over that hump, if he was doing well, they would plug it for several hours. The plug was sent up from the materials department that evening after I left. My phone rang around 9 p.m. Patrick was calling me. I could hear the relief in his voice and he explained how much easier it was to breath and that talking was so helpful. We chatted about a few things and then I spoke with my sister who was staying with him at the hospital again.

I went to sleep feeling so much better about where things were. That night I got six hours of sleep in a row. The longest stretch of sleep in over a week. Although, I was woken up at 4:45 a.m. and never had the opportunity to go back to bed, I felt pretty good.

I got a text from my older sister the next morning telling me to call when I was awake so she could update me. She informed me that the plug had been in all night and Patrick was a new man. He made a few laps around the unit and was cracking a few jokes. He was feeling so well, he drank some chicken broth and ate some applesauce. More good news. I was in disbelief at the huge turn around he had made in just 24 hours. She told me that Dr.V. was in to look at his flap site, had removed the drain, and changed the dressing. My sister also told me that Dr. C. would be in to remove the trach that morning, and Patrick could go home. I was still amazed and loaded the car so that I could get to the hospital. I figured I'd be there for a good portion of the day, but I was wrong. A 40 minute commute left time for Dr. C. to get there. He removed the drain in his neck, his trach, and finally the NG tube, which was Patrick's least favorite part. We were given discharge instructions, packed with supplies, set up appointments to see Dr. D. and Dr. V. the following week and were on our way. I was there for less than two hours.

Once home, Patrick made himself comfortable on the couch. I worked on feeding our two children. Several family members were scurrying around helping me with the girls and cleaning. They too were not anticipating his early arrival. I dodged off to the pharmacy to get his prescriptions. It took a few times, but once again we got his medication under control and got him settled into a routine, things went fairly smoothly. We are still dealing with a bit of anxiety, but it's getting better by the day.

We change the gauze and tape that covers the hole where is trach was twice a day. Over the next week, the hole will close by itself from the inside out. We have to be sure Patrick keeps pressure on the opening when he talks, coughs or sneezes as the more air that passes through the hole, the longer the healing takes. He swishes with some antiseptic twice a day, and we have changed the bandage where the skin graft was taken from his leg due to a bit of blood leakage. His large incision on his neck requires no attention other than watching for swelling or redness. We do not have to do anything with his bandaged arm other than keep it dry. I've got a chart to keep track of all of the medications, bandage changes, and mouth swishing.

It became quickly apparent that I would need another set of hands at home at all times. Running up and down the stairs, nursing, pureeing foods, cuddling our oldest, crushing pills, feeding our oldest, changing diapers, etc. were just a few things that I was trying to do. One of my aunts stayed to help until the girls went to bed and then my brother-in-law graciously offered to stay here to help with Patrick during the night. I prepared all of his meds and set them up in the kitchen. I set three alarms on his phone. He woke up every three hours to give Patrick his medication. I'm thankful for that because I was up all night with our youngest.

Patrick has lost only five pounds! I consider this a great number. He is doing fairly well with eating. We are sticking to a soft and liquid diet all the while working to be sure that he gets something from all of the food groups. He's progressing, but is still concerned about the flap and is very cautious not to get food stuck in it. Patrick is making slow and steady progress.

The best news was delivered by Dr. D. the first evening we were home. Dr. D. called to tell us the pathology report had come in. The boarder line around his lesion came back as negative for Carcinoma and his lymph nodes were negative as well for filtering cancerous cells. Home run!!! Once healed from the surgery, Patrick will require no other treatment other than periodic scans. We are thrilled that radiation and Chemotherapy will not be part of our journey.

Thursday, February 10, 2011

Post Surgery - Day Two

If I were to use an alternative title I'd name this post 'Some Highs and Some Lows.' Yesterday was a rough day to say the least. Patrick started out in the ICU coughing up some blood clots, which as it turns out is totally normal, but when you are trached it is extremely scary. Not that I can speak from first hand experience, but I can see the fear in his eyes when it happens, and the notes he writes post episode tug at my heart strings.

The Speech Pathologist was in his room in the morning and she helped Patrick to use his voice. He was able to say, 'ahhhh.' There is mention of either removing the trach all together or replacing the one he has now with one that will allow him to speak.

Patrick's good friend drove three and a half hours one way for a 20 minute visit yesterday. He really lit up when his friend was in the room. I am thankful for moments like these.

He gets frustrated with me when I'm not able to read his lips or understand what he needs or is trying to say. He becomes upset when I'm not sure how to do certain things, medically speaking. I'm doing my best, but his patience is low, understandably, so I left at the end of the day feeling emotionally exhausted. I know he's not trying to make me feel frustrated and I'm sure some of his reaction is based on the large amount of medication he is on, but it's still hard.

Not only was Patrick able to use his voice box, the drain in his mouth was take out in the morning. This drain was really bothering Patrick as the width was large and the end was constantly poking him in the tongue. Getting that out was helpful.

Patrick was given the okay to drink small sips of water and eat as much ice as he wants. He was able to swallow fairly well and took down several cups of water. Drinking and pushing fluids through his feeding tube cause him to be rather gassy, so a burping contest would suit him well right now. He can swish and spit too and little green sponges on the end of sticks have been like candy. Just being able to wet his mouth makes him a little more comfortable.

My fighter was up and walking around the ICU again and he ventured onto stairs. Because of his determination to move, he no longer has to wear the pressure cuffs on his legs. One less tube or line attached is another point for the home team.

Patrick is experiencing an extreme amount of anxiety. We are guessing the feeding tube and trach are giving him odd sensations in the back of his throat, causing him to be nauseous. At first we thought the NG tube might have moved in his stomach, but the X-ray told us it is in the exact same place as it was immediately following the operation. So, to help with the nausea, they stopped the feeding for 12 hours, gave anti-nausea medication, and went back to using the I.V. for medication and hydration fluids. The slow trickle of liquid nourishment was started back up during the night and he seems to be doing fine, yet still complains of nausea. The anxiety causes his pulse to soar and him to become really upset. He does not like to be alone in his room. The only time he can rest is if someone is sitting with him. I am constantly reassuring him that he is breathing and all is well. My older sister, the nurse, came to our rescue last night. She graciously offered to stay at the hospital with Patrick. She took care of him, kept his anxiety down, and because she is so awesome will be doing it a second night. I'm not sure what I would do without her.

Patrick was moved from the ICU in the afternoon. He now has a room on the fourth floor. It's progress, but again, leads to some anxiety for him. The 'call' button does him no good. When they answer and ask, 'how can I help you?' he obviously cannot reply. For this reason, his room is near the nurses station, but it took seven minutes for the nurse to come after I pressed the button. When you are having breathing issues or the feeling of having them, that is a very long wait. This leaves much to be desired in the area of trust with Patrick. This is part of the reason he wants to have someone with him at all times.

It's a lot! Having a husband recovering from major surgery, waiting for a pathology report, having two children who are sick one of which is nursing, being sick myself still because I'm not getting enough rest, a dog, a house, and a commute to and from the hospital each day really can take a toll on you. I'm trying to keep my chin up even through the difficult times. I'm so very thankful for my support system and as I told a friend on the phone last night, I'll just keep chugging along. Reminds me of 'The Little Engine That Could.' Chugga-chugga-choo-choo...

Is this journey over yet?

Wednesday, February 9, 2011

Post Surgery - Day One

I was up eight times that night with sick kids. Ironically, I felt rested when I woke up because I wasn't actually awake all night, just woken up several times. My oldest sister was still at my house, so once I showered I left and headed to the hospital. I knew I would hit a bit of big city traffic, but I didn't care. I wanted to be in transit. I needed to see Patrick. Halfway there I got a call from my older sister who yelled once I answered, 'he's awake! He's sitting up, awake and writing notes!' I was so happy. It made me want to get there even faster. We had spoken with the doctors the night before and they told us that they would wean him off of the ventilator around 9:00 a.m., so I wasn't expecting him to be awake for several hours after I arrived.

I parked in the parking garage and my feet couldn't carry me to the ICU fast enough. I turned the corner and saw him through the glass doors. He looked and me and I smiled. He was sitting up, awake, breathing on his own. Like the day before, I wasn't light headed. That was until I saw him struggling to get some fluid out of his lungs. It's difficult for him to cough and he looks in pain as he tries to get some of the gunk out. It looks like he isn't able to breath well. I needed to sit down. No, I needed to lay down. I reclined the chair and took deep breaths until I felt better. My sister, the nurse, told me the same thing happened to her. She has seen the worst, but because he's family, it got to her. Only the second time in her career. Once over that hump, I starting checking out his scars. He had been up since 5:00 a.m. and wrote me a note telling me he didn't know when I was coming back. That made me sad. He was very confused about the date and day of week and naturally had no recollection of the night before.

His tongue looked amazing! The flap is pink in color and is checked frequently to be sure there is blood flow via a miniature ultrasound machine. His scar is healing nicely and although it looks rather Frankenstein-esque, it will heal over the next year and strangers won't know it exists. Sadly the tracheostomy has a steady slow leak of blood which is normal, but annoying.

He was able to be weaned off of all three I.V.'s throughout the day, only the ports will remain until he leaves the hospital. The large ventilator was replaced by a smaller version and a large blue tube pumps warm air around the trachea site. The heart LEDs were removed and his catheter taken out. The drains in the surgical sites and the feeding tube remain. He is also still required to wear a blood pressure cuff on his arm and pressure cuffs on his legs. The cuffs on his legs are there to help blood flow and reduce the risk of getting blood clots while lying in bed. He uses a suction tube every few minutes to get the saliva, and blood out of his mouth so he doesn't choke.

Patrick was determined to be up and around on post-operation day one. He moved to and from the recliner in the room a few times and during my last visit of the day, he insisted on walking. He took two laps around the ICU, walking faster than his nurse wanted him to. I'm thankful for his drive to recover, I just don't want him to push it too hard. When he moves around the room to and from the chair, he unhooks and hooks all the tubes and lines himself. He is doing so well, that he will be moved to a regular floor room on Day 2!

Patrick gets frustrated with not being able to talk. He can write things on a clip board, use his right hand to finger spell and mouths words. He complained of being hungry all morning, so they increased the amount of the liquid meal he receives. It seemed to help. He is also jittery from the steroids they are giving him, which help the swelling go down, but it's hard for him to sit still and he can't focus on a magazine, t.v. show or Ipad game yet.

All things considering, he is doing amazingly well. Dr. V. told him that he would have a fully recovery in the area of speech and eating.

Tuesday, February 8, 2011

Surgery Day

Patrick took a shower, dried with a clean towel, and then used the pre-operation wipes supplied by the hospital. Wipes that help limit infections. We headed to bed knowing neither of us would be sleeping well. He, because of the surgery and I, because I would be thinking about him and rocking a sick baby. Another restless night with our youngest meant that when it was time to get up and get dressed and head to the hospital at five O'clock in the morning, I was still dog tired. My oldest sister stayed at our house, so the girls would not be disturbed. We left, it was still dark outside. It was a pretty quiet ride to the hospital. We parked in the day surgery parking lot and headed up the elevator to check in. Once we got Patrick to the room, he changed into his hospital gown and they started an I.V. It was there that we hugged each other so tightly. It had been several days since we had the chance to hug or kiss as the girls and I have been extremely sick. In order to keep Patrick healthy we limited contact. We waited and each doctor came in to visit with us before the surgery. Each doctor took my cell phone number and promised to call with updates. Dr. D. sent a chaplain in, as he does with all of his surgery patients, to pray with us. My older sister joined us. It seemed like the two hour waiting time flew by and before I knew it, Patrick was wheeled away. My sister and I headed down the cafe to grab a bite to eat and have a coffee. It was going to be a long wait.

Just an hour and a half into surgery and a nurse came out to tell us that they started at 8:30 and every had gone smoothly so far. While we waited I placed a call to the pediatrician to get some medication for our youngest as she was developing the same symptoms our oldest had. We visited with the staff in the E.D., made phone calls, read magazines... I found that I couldn't do anything that required too much thought as my mind was already racing.

Around noon some friends brought us a delicious lunch. Then, I dodged home to see the girls for a bit and take a nap. On our way, Dr. D. called to say that he had finished with his portion and everything went smoothly. It was now time for Dr. V. to complete the operation. By this point my retinas were burning and I knew I needed to get some rest. Thankfully, the almost two hour nap was perfect. Just what I needed. We darted back to the hospital to the family waiting room and received a call from the nurse who would be taking care of Patrick in the ICU. He gave Dr. V.'s number and told me to give him a buzz in 20 minutes. I did. No answer. My sister called and found out he was moved to ICU East, so we headed there. We were told Patrick was actually transferred to ICU West. Once there, we were told to wait in the waiting room while they finished transferring him. Dr. D's fellow and the anesthesiologist spoke with my sister and I while we waited. They told us that everything had gone really well, but that while he was being moved from the operating table to the hospital bed, his nasal intubation tube was pulled out which meant Patrick had to be intubated via tracheostomy immediately.

I prepared myself to see Patrick engulfed in wires. Knowing I have a weak stomach, Patrick made me promise that I would have my sister wheel me in while sitting in a wheelchair as to prevent me from passing out. Surprisingly enough, I didn't get light headed, not in the slightest. Patrick's nurse, a friend, went over what all the tubes were and what kind of things he would be doing to take care of him. I shed a few tears at the sight because I was sad that Patrick was going through all of this. He has a scar nearly across his whole neck where they removed the lymph nodes. His tongue was so swollen, it wouldn't fit in his mouth. A cast covered his left arm to keep the site where they removed the skin flap and vein for the reconstruction. There is a bloodied 2 X 2 inch square on his left thigh where they took the graft to use as a cover for the flap site. He had a tracheostomy and ventilator. A feeding tube was sutured to his nasal cavity. There are drains exiting his arm and neck to allow fluid to drain from surgical sites. All that along with monitors meant he was covered in tubes and lines. I sat by his bed and held his hand. A little time had passed and Patrick opened his eyes and started pulling his arms up in the air. He wanted to be awake. A bit more medication and he was back down to resting comfortably. It quickly came to be seven O'clock and visitors are not allowed when shift change comes. I told him I loved him and that I would be back in the morning. I didn't want to leave, but my two babes required a bit of my attention before bed. We met his next nurse, who as it turns out Patrick knew, and were on our way. I was woken by sick babies all night, and each time before I would fall back asleep, I just kept picturing Patrick with his eyes bugged out, wanting to wake up. The next day would reveal how much of a fighter he truly is.

Friday, February 4, 2011

What was supposed to be the calm before the storm...

We had another week to wait. A week before Patrick's surgery. That week of wait is almost over. That week of waiting hasn't been easy to say the least. It's not enough that we're waiting for Patrick to undergo surgery to remove cancer, but that I have been homebound with a horrible cold. Last Sunday I had a tickle in my throat. Monday, I was hit hard. The pressure caused me to be dizzy and I couldn't keep my eyes open. I felt, as I said before, like a steamroller had plowed over me. For two days, I was a zombie. Then, I developed a cough, but things were getting better, or so I thought.

On Wednesday, Patrick and our oldest were taking a walk to our local hardware store. (It's just four blocks away.) She fell down and bonked her head on the way there. He carried her right home. She was upset and crying, rightly so. We checked her head and iced it. We looked at her pupils. I noticed right away that she seemed lethargic and sleepy, and she was not interested in eating her lunch. I called my older sister, the nurse. She told me that it would be okay for her to go to sleep and have Tylenol. Our babe mentioned her head hurt, so I assumed she had a headache. I gave her the medication, and put her to bed hoping all would be well when she woke up. My sister also recommended that I check her breathing and try to rouse her after a half hour. I did. She seemed fine and went right back to sleep. After her rest, she was still sleepy and wanted to just relax on the couch. Dinnertime came. She was uninterested in eating, but I wanted her to try. I popped her up in her booster and after just a few minutes she vomited all over the table and her lap. Up until this point, I had yet to witness my oldest vomit, so my concern grew tenfold. A second call to my sister revealed that it would probably be wise to have her seen. I packed the girls up and headed to the hospital. My sister met me there to help with our youngest and Patrick was already there working his regular shift.

The nurse collected the basic information and stats, one of which was her temperature. It was slightly elevated. Our girl passed her neuro exam then started wiggling about on the hospital bed acting very uncomfortable, so I scooped her up and put her on my lap. It was then that she started projectile vomiting, covering the floor, two feet of the wall and the bin next to the counter. The doctor came back a bit later and said that ultimately the choice, to have or not have a CT Scan, was up to us. She mentioned that it wasn't going to be her sitting next to the bed all night while she was vomiting wondering if it was due to a virus or the bonk. My sister rocked our youngest to sleep and after a few minutes of debate, we opted for the scan as we have so many things weighing on our mind, we didn't want this to be one of them. Patrick took her to the scan and waited with her. Not ten minutes later, the results came back. Negative. It became apparent that we had fallen victim to an awkwardly, scary coincidence. Who knew she'd catch a virus and hit her head the same day? She was given some anti nausea medication, a popsicle, ibuprofen and acetaminophen. We arrived home at 10 p.m. I transferred my two sleeping girls to their beds and headed to my own.

Half hour later, our oldest was begging for me through the monitor and coughing. I sat at her side trying to comfort her. She was burning up even with medication on board. I once again scooped her up and brought her to bed with me. We were up all night. She was uncomfortable. I was worried and needed to nurse our youngest at one point. Patrick was banished to the guest room as we do not want him to get sick. I think we slept for an hour or two in the early morning. Not too sure. I'm too tired to remember.

This morning, I took our oldest to the doctor because it's Friday. The weekend means a closed doctor's office if things were to get worse, and Monday will be spent at the hospital with Patrick in surgery. It sounds like she has a virus and a cold at the same time. It's not the flu, the nose swab told us so. Monday might reveal what we're working with. Normally, I wouldn't care and I'd ride out this nasty illness, but if Patrick does get sick it would be helpful to know what it is. From talking with the doctor in the E.D. and our pediatrician today, it sounds like this is the nasty illness that is going around.

While putting our youngest to bed tonight, her head felt a little warm. Sure enough, she has a slightly elevated temperature. My already full plate, just received five more helpings of unsettling tuna noodle casserole. My two babies just want to snuggle their mama. A grandma, cousin or auntie just won't do the trick right now. So, I'll scoop them up and just keep swimming.

I was hoping for a calm before the storm. What I got was a roller coaster ride while wearing a pressure vest.

Wednesday, February 2, 2011

Brain Dump - Second Edition

Before I was blessed enough to become a stay at home mom, I was a fourth grade teacher. I would often tell my students to open their journal and 'brain dump.' The reasoning was that by writing down whatever came to their mind they could become inspired to write about something, or clear their mind for another great idea to enter. As I process all of this information, I feel the need to brain dump, to get my thoughts out on paper (or rather the computer screen). I need to clear some space.

While waiting for the surgery date, Patrick had time to take a few photos of our youngest to commemorate her turning six months old. Photography is one of Patrick's hobbies, he takes all the photos of the girls and our family. Not too long ago, we took a family photo and our oldest's two-year-old portraits, so we're all caught up until he'll be able to get back behind the lens.

I woke up with a horrific cold a few days ago. I feel like a steamroller has plowed its way over my body. My eyes sting, my chest hurts when I cough, and I'm constantly blowing my nose. Even though, I feel extremely horrible, I'm thankful that I'm getting this over and done with this week. Being sick this week is terrible, but being sick next week would be worse. I am really hoping neither of the girls get sick or more importantly, Patrick doesn't.

I'm almost done with all the scheduling for next week. Childcare, meals, and housecleaning are pretty much taken care of. I've made sure someone will be waiting with me at the hospital too. I'm thankful my family lives close. My next task is to type out a general schedule for both girls so that whomever they are with will have an idea of what their day is normally like.

My oldest sister texted me a few days back; Grab a Kleenex and go listen to Rascal Flatts' new song 'I won't let go.' I was a bit busy right then, but took her suggestion and plugged the title into Pandora on my phone a few hours later. The song speaks volumes about our journey. If you have a minute or three, you should give it a listen. I've changed the ringtone to it, so that when Patrick calls me, I get a snip it. If you're wondering, yes! I did make Patrick listen to it also.

When Patrick had the biopsy done a few weeks back, it required a few stitches. Dr. D. told him that normally wasn't necessary, but it was in this case. Patrick's tongue was numbed with a local anesthetic, and a tissue sample was taken. When we left the office, he was slurring his speech, but seemed to be in no pain. He said he would just take some ibuprofen and/or Tylenol so there was no need to fill the painkiller prescription. A few hours passed and the anesthetic wore off and I found myself making a trip to our local pharmacy. He was ordered to consume a soft food diet. I racked my brain thinking of soft foods. Cooking and baking are hobbies of mine, and I research and scour the Internet for new recipes on a weekly basis, so I didn't think it would be too much of a challenge to keep his belly full. Mashed potatoes, scrambled eggs, applesauce, yogurt... I assumed that it would take just a few days for his ability to eat to return to par. I was wrong. It's been over two weeks, and although the stitches have fallen out, eating is still painful. He can't chew on the left side, it hurts to swallow, he eats at a toddler's pace, and there are sharp pains running through his pallet and jaw.

He mentioned to me the other day that if this is what eating will be like for the rest of his life, he's going to lose a lot of weight. Losing weight is not hard for Patrick to do. If he misses a meal, he's down four pounds. In fact, since the biopsy, he'd lost five pounds regardless of trying to keep his bodyweight up. After reading a few blogs of other soldiers fighting this battle we've come to the realization that we should be doing a better job of preparing Patrick. He now chugs a second protein shake each day with whole milk and I am insisting that no matter how busy he becomes at work, he needs to eat a snack between lunch and dinner. If only I could loan him some fat storage, all would be well. In all seriousness though, I've been feeding him higher fat and protein snacks and meals hoping to help him gain a few extra pounds before his operation.

Hi Dr. D.! My sister emailed Dr. D. and shared the blog address with him. I was a little embarrassed at first, but then realized it's a good thing he's reading this for two reasons. First, I'm happy he knows that we are confident in his abilities because let's get serious, a thank-you card isn't going to do justice here. Second, I think it's wonderful that the doctor will get to read one of his patient's journeys. You know, taking a walk in their shoes, so to speak. So, read on Dr. D., read on.

I'm in awe of the love and support we have received from family, friends, coworkers, and even people we don't know. More to come on this subject later...For now, just waiting.