I Found Hope...

The last two blogs I wrote were pretty superficial, not really detailing the nitty gritty side of the recovery from the radical cysectomy, a total bladder and urethra removal, I had just over 5 weeks ago. I wrote about the actual surgery and then all about the things I need to do and maintain now that I don’t have a bladder. I wrote those blogs truthfully but I definitely sprinkled some glitter over the really hard parts. 

As difficult as this will be for me I know I need to open up and tell the rest of the story... After I posted the last one I was bombarded by questions, comments, and even praise but it was more than I could take while I was still deep in the murk and mire of the recovery.  

I thought I was prepared for the intensity and extremeness of this recovery but I didn’t have a clue. I have had 29 surgeries before this one… Each surgery and recovery was different but they still followed a similar pattern and recovery “style” but this one threw everything I know about surgeries and recovering straight out the window.

Usually I lean heavily on the support of my ginormous family and few good friends. I usually spend a couple days sleeping then I want all the distraction and company I can get. I chat on the phone, I have visitors over, and I just recover in the midst of the regular going ons of my family.

I knew this one was going to be different and obviously no other surgery had been nearly as serious as this one but I figured I would still follow that pattern pretty closely.

Not so much.

Including in-laws and extended family I have over 100 family members that I consider myself close to, people that I could tell my deepest secrets to (I guess telling 100 people would disqualify them from being deep secrets (I’m a horrible secret keeper, even my own aren’t safe)). Usually these family members- through blood or law- are a huge part of every area of my life, especially my illnesses over the last 15 years.

After this surgery, my love and trust of them didn’t fade but I was in this recovery so deep I could barely deal with it on my own… I couldn’t bring anyone else into it. I had to hunker down and I had to tell myself to breathe every few seconds, I had to remind myself I did this for a reason, I had to pray- sometimes several times in a minute, I had to sleep, I had to eat and drink, I just had to get through this.

The funny thing about being loved so completely by so many people is that your pain causes a lot of others pain. I can’t explain it more than that. I just know when I was at a place where I could barely handle my own pain I just couldn’t bear the weight of anyone else’s.

So. I pushed everyone away. I kept a little group of less than 10 people that I opened up to a bit but I still kept a pretty tight lid on things. It was only when I was with my husband and my Mom that I could totally let my guard down. I saw the pain in their eyes as I moaned in agony, as I sobbed when I saw the grotesque changes to my body, and when I dry heaved after hours of vomiting every ounce in my stomach. They didn’t just watch me recovery, they felt every pain- both physically and emotionally- with me. As much as I hated hurting them through my own hurt, I needed them. Selfishly, it was helpful to share some of the burden but I hated hurting the people I love most. 

I posted regular updates on facebook and would answer texts as my consciousness allowed but I barely wanted to talk on the phone and had very limited visitors. Even when I did talk to them I never really let on how bad things were... So not many people know the severity of this recovery. 

For many reasons I feel like I need to share some of that with you guys but unfortunately or fortunately, depending on who you ask, now that I'm on the other side of the pit of misery I will never be able to fully explain it. Still, I need to try. So... here goes nothing... 

The day I got home from the hospital was a long day but I didn’t care, my Mommy adrenaline kicked in and I wanted to gobble up my 2 ½ year old son, Titus. I hadn’t seen him in 8 days and he was just as luscious as I remembered but I couldn’t believe how much he had grown. I had never been away from him that long and I wanted to gather him into my arms and just breathe him in. But the pain. Oh the pain. After just giving him a little hug and kiss I was out of breath and positively exhausted. 

My Mom helping me walk into the house! So glad to be home! (The thing tied around me is the gait belt you'll read about below) 

Titus was so excited I was home!

I missed that boy sooo much!!! Oooh that smile!!

I used my walker to get to the bottom of the stairs and then I looked up at my Mt. Everest. I couldn’t believe I had to climb those stairs. The stairs in our house are slippery wood, really steep and there are lots of them. I started out going slow and taking deep breaths after each one but the pain was worsening and I decided to just get it over with. So I charged (okay I didn’t charge but I turned my speed from turtle to… well I can’t think of a slightly faster animal..) up the last few and then straight to my big, cozy bed! Just the sight of the thing made me feel a bit less tired.

I was thrilled to be home but I was exhausted from the work of getting discharged, the long ride home, and then the trek up to my room so as soon as I was dressed in my favorite nightgown and tucked into my bed wrapped in fresh sheets and thick blankets I was asleep.

So happy to have my little family together again!!! 

I woke up to throbbing pain. I quickly realized this whole “home” business wasn’t as great as I remembered… I didn’t have the option of IV drugs or a nurse who kept me on schedule by bringing me my oral meds when they were due. Before I knew it, I was behind my pain and that thing was a steam engine that I couldn’t catch up to.

The next day I continued to battle the pain. It fought a really good fight. No matter what weapons I brought, nothing could conquer the pain. Then I started having crazy itching under the wafer, (see last blog, Carry On Baggage, for more details about the urostomy system) I tried to ignore it but it just got itchier every minute. I knew that meant I was allergic to the wafer that I had chosen. I had a slight melt down but thankfully I got a hold of the urostomy nurse and she ordered a bunch of samples of other kinds for me to try but she said they wouldn’t be here for a couple days. In the mean time she suggested that I cut off as much of the adhesive as we could without it falling off.

The problem was... That meant removing the one I had on. The urostomy nurse came to my room twice while I was in the hospital to give us instructions on the care of the system. Unfortunately, both times I was totally out of it but luckily my husband and my Mom were each at one. So I had to rely on their memories to care for it. 

One time when I was in the hospital there was moisture around my wafer so the night nurse decided we should just change it. She ripped the wafer off of my skin, grabbed a towel and wiped that thing like she was a shoe shiner! Oh it hurt so bad, I wriggled around in agony as she cleaned it up before putting a new one on. Despite the darkness of my room I caught a glimpse of my stoma and it was positively repulsive. It was the first time I saw it. I just cried. The nurse “comforted me” by telling me very factually that it looked like a pretty good stoma, it could have been a lot worse and that it was normal for me to have a negative reaction the first time I saw it. Helpful.

I made myself stop crying so she would leave my room and leave me to feel bad for myself alone. Then I cried some more, a lot more.

So when I was home and I knew we were going to need to change it I was terrified. The home care nurse was coming the next day so I convinced my Mom and husband that we should just wait until then so she could check it out before reapplying the wafer and bag.

The next morning the nurse arrived… She was a nun who barely spoke English. I should have been prepared for some pain. She started the process by prying the wafer off of my skin using alcohol wipes, which felt just about what you would imagine pouring alcohol into open wounds would feel like. Once she got the thing off of me my skin was bright red and angry, it had open irritation in some spots and was covered in welts. When my husband realized she had used the alcohol instead of the adhesive remover he took over and cut the wafer leaving just a tiny edge of adhesive on and then he wiped my poor, sad skin with the barrier wipes. I didn’t look. I just laid there covering my eyes while my husband and Sister Mary Clarence (that wasn’t her name but the only nun I know is from Sister Act…) tended to me. 

My husband was wonderful, while I laid there covering my eyes and holding my breath from the pain he told me it looked great and that it was getting smaller every day, he said it didn't bother him at all. I don't know how much of that is true but either way... It was exactly what I needed to hear. 

Once everything was reattached I quickly covered myself up and was happy to be done with it for the time being. However… Even with trimming off most of the adhesive my skin was still really irritated so when the package arrived with new samples the next day I knew I had to change it.

I decided I would try taking it off in the shower this time. It came off fairly easy but it was much harder to avert my eyes… When I finally peeled the sticky wafer off of my horribly irritated skin I accidently looked down.

Oh what a sight… My stomach was still really swollen from surgery so it made the stoma look like a tiny bright red hill inside a giant valley. The skin around it was covered in rashy welts. Worst of all… brace yourself… it was covered in thick mucus that looked like mayonnaise that had been sitting out in the sun… The smell was repulsive and I couldn’t stop gagging. I looked away and held my breath then I used the hand held shower head to clean my belly off but that just revealed my stoma- a huge, red, wrinkly wet piece of intestines outside of my body- straight from a horror movie. 

In between gags I verbally assaulted my poor abdomen until the frustration turned into a deep sadness and suddenly I was sobbing. My Mom, who was getting the new supplies all ready, came in when she heard me. She started crying too, feeling my pain just as I felt it, and she told me she couldn’t imagine how I was feeling.

After my Mom settled my sobs, like I settled Titus’- with love and understanding, I finished cleaning up in the shower while forcing myself to look away and then got out to get everything reconnected.

The new wafer worked perfectly on my skin and so far I haven’t had any issues with it. The stoma has continued to shrink a tiny bit each day and now I can look at it without much thought. It’s starting to become a part of me just like my stretch marks and sun spots that have shown up over the years. I don’t like them but I accept them. Every so often it burns and when we're changing everything I can see the edges of my skin around the stoma sometimes bleeds so I think it's the urine getting into the still healing skin that stings so badly. Overall... that side of the recovery gets better each day. 

The mucus still disgusts me. I hate when it gets stuck in my bag, clogging the drain and I have to force it out. It is from my illeal conduit, the illeal’s previous job was to help break down and move along solid waste so even though it’s been promoted it still producing the mucus and making my urine reek. 

It's also an interesting challenge each time I go to get dressed.. Aside from the family of birds that has taken up residence in the attic right above my closet, man I hate birds... I never know what is or isn't going to work with my urostomy bag. It's all trial and error at this point. I've nailed a couple outfits down but some are still in the discovery process, some things- like jeans- I haven't even tried yet, and some things just don't work! I thought I had a hard time finding cute comfy clothes before but now I have way more variables that I need to factor in every time I get dressed.. 

Anyway, the days went by and the recovery progressed at glacial speeds. I’m sure there were improvements happening each day but I was just generally miserable all the time. I had a bad case of “upstairs fever” a week after I got home. The stairs were daunting so I took my walks around the upstairs hall (still leaning heavily on my walker) 3 times a day but for the most part I was just in bed but I couldn’t take it much longer. So we made a plan... Operation Socialize Deni.

A good friend of ours gave us a cozy leather recliner and it wasn’t far from the bottom of the stairs so it was just the stairs that were the problem but I had to try it. So we tightened up the gait belt (a soft belt that went around me that someone held onto while I walked in case I started to fall) which my husband held onto with all his might (and the man has a lot of might) and my mom walked in front of me. It actually went pretty smoothly, I was down the stairs in no time. Then I used the walker and made my way to my recovery chair. I felt normal for the first time in 2 weeks! I couldn’t do anything except sit in the recliner but I didn’t care, just being downstairs and getting to be a part of the craziness was just bliss.

In the recliner and so happy to be downstairs! 

It was a gorgeous day so a few hours later we recruited my sister along with my normal team and my walker to help me get outside to eat dinner. I didn’t eat much and was exhausted pretty quickly but getting some sunshine and being able to be with my family was totally worth it! I felt like things were going really well for 2 weeks post-op and I was so encouraged and reassured that I made the right decision to have the surgery.

Outside enjoying a bit of sunshine with my sister and Cheetos finger Titus! 

Two days later, that all changed. One of the hardest parts of this recovery has been my intestines adjusting to their new arrangement without the bit the doctor recruited for my conduit. Just two days after surgery the diarrhea started and ever since I have bounced between constipation and diarrhea. Sometimes within minutes it will turn from one to the other. It’s a month later and I STILL haven’t found the right balance of stool softeners and laxatives that make it easy to go when I need to without going to the other extreme. The side effects from this piece of the recovery puzzle has been brutal. I won’t go into too much detail but I’m sure you can imagine…

I was sitting on the toilet after severe cramps told me to go there. I wasn’t sure what I was in for and wasn’t even really paying much attention when suddenly I felt a rush of fluid. It actually took me a few seconds to remember that I wasn’t supposed to be feeling anything like that anymore. I immediately stood up and freaked out when I saw blood pouring out of me, where my urethra was a few weeks before. 

I went back to bed and sat on a towel that was quickly drenched with a mix of fluid and blood. Each time anything came out pain rippled through my whole entire body. It was indescribable white hot pain. We called the doctor and they reassured us that some “discharge” was normal. We tried to let that reassure us but it didn’t. The next thing I knew I was vomiting and had a high fever. My home care nurse came out to visit me and my blood pressure was 85/55 and my pulse rate was faint, irregular and over 100 so she called the doctor and asked if they could get me in or if I should go to the ER. Thankfully he was able to squeeze me in… We found out I had a hematoma, which meant there was blood outside of the vessels (in the hospital I had a JP drain to get rid of the excess blood and fluid and they thought they got it all but clearly they didn’t). So the empty little tunnel that was left after they removed my urethra, which they had plugged up then stitched shut, ruptured. The combination of the pressure from the extra fluid, doing a bit too much (going outside and taking a short ride on the golf cart to visit our cows) and some unconscious straining during the bowel movement was too much for it.

Fortunately it wasn’t a major set back and although it was excruciating, there was nothing they could do. So we just had to wait and let my body heal itself.

My body shut down so it could focus on healing, I couldn’t stay awake for more than an hour or two for the next few days. Every so often I would wake up in a puddle of sweat and my fever would be gone but then before I knew it I would wake up shivering and it would be back up. Finally 3 days after that whole mess began things started to improve, although the pain in my pelvic floor was still staggering.

After that I stalled again. Except I was having the opposite problem... I couldn’t sleep- I had been on all the meds for so long they actually started having the opposite affect and kept me from getting good rest. The pain was constant and severe. I couldn't sit at all because the pain in my who-ha was so intense. I was still really unsteady so I couldn’t walk without the walker and someone close by and I could barely stand at all. I was dehydrated from vomiting, having diarrhea, and from just not eating or drinking because of my upset tummy. It felt like I was never going to get better. 

I was so tired and grouchy. I couldn’t deal with anyone. I didn’t want anyone to come visit me in my room- even my precious baby boy (one time he was in my bed watching a show with me when suddenly I started vomiting and I hung my head off the side of the bed so he wouldn’t see me throw up, there was no way I could deal with him taking on some of my pain) and I slept as much as I could. Yet I was also really lonely. I didn’t know what I wanted, just like I knew I was starving and had to eat but I couldn’t think of one single edible thing in the world that didn’t repulse me.

I know there were shimmery moments that distracted me from the pain and suffering for times here and there but for the most part I just went through the motions of trying to stay alive even though it would have been much easier to not. Don’t get me wrong, I wasn’t suicidal… I was just so incredibly discouraged. Every day I deeply regretted my decision to have the surgery but I didn’t dare let on.

Everyone was constantly going on about how brave and strong I was, what a great attitude I had, I was an inspiration… I really wasn’t. If there would have been a way out I would have taken it no questions asked.

People wanted to know how my IC pain was and they couldn’t stop telling me everything would be worth it when I was living my new normal life that would apparently be here before I knew it… I hated that. I had no idea, actually I still have no idea, which pain is temporary and just a part of my recovery and what will linger for months or years and frankly, I didn’t give a hot buttered biscuit about some future Deni that would be so thankful for all that the present Deni was going through. Future Deni is a jerk and past Deni is a whiner. I didn’t even know what I was talking about or who I was any more. I just had to keep going.

I was so frustrated with the way things were going, I was just done physically and emotionally but it wasn't going to get better on it's own. I had to take this recovery process on and in order to do that I knew I had to kick myself in the toosh and get to work. I wasn’t going to magically recover. This recovery required me to push myself and be uncomfortable. I had to do my physical therapy exercises, I had to walk, I had to make myself eat and DRINK, I had to go downstairs and be a part of the family again. I couldn’t use my “I can’t sit” excuse. So with some team work my family set up an air mattress that was easy to get in and out of downstairs and even though I was still laying down the majority of the time, it got me out of my “sick bed” and therefore my sick mentality.

Snuggled up in my nest downstairs!

I wasn’t sick anymore, I was recovering- two extremely different things that needed to be treated and thought of totally differently. The problem is, I've been in the chronically sick mindset for 15 years and I couldn't just switch gears in a day but I had to work on it. 

Just when things were starting to look up again the pain in my “urethra” continued to get worse and worse. One night I woke up to an intense stabbing pain and pressure. The pain took my breath away. I didn’t know what to do so I woke my husband (which I never do because he sleeps the sleep of the dead) and handed him a flash light and told him I needed him to look at my who-ha… In his still slightly comatose state he confirmed that there was definitely something down there, he said it looked like a bump and a stitch. Before I could ask another question he was back to sleep. I decided to do some investigating on my own and felt a hard lump, like a sharp rock, right at the entrance of my vagina. The pain continued to soar and no matter what meds I took I couldn’t even sit still with the stabbing pain. The only thing I could think of to do was take a shower… It’s been my go-to remedy for any pain for so long I couldn’t stop myself. It was then 3am and in my desperation I called my Mom who came up and helped me get in the shower and waited until the pain eased a bit then she helped me get back to bed. Eventually the combo of meds and exhaustion kicked in and I slept for a few hours.  

The next day I went back to my surgeon to make sure everything was okay… 

He said it was all swollen and irritated in my whole pelvic floor area and the bulge and stab I was feeling was where he stitched things up (it made sense once I remembered the vagina’s ceiling was the urethra's floor). He thought the trauma from the whole hematoma/ urethra rupture ordeal and excess swelling was causing extra pressure and therefore excess pain. He told me to get on a cycle of ibuprofen and keep up the good work…

I was so mad. All that for nothing. Every time I started to feel like I was maybe doing a bit better something dramatically horrible would happen. I just felt like it was never going to get better. I even posted on facebook that I was pretty much out of hope.

Thankfully my support system is fierce. Several people encouraged me in different ways but one letter from a dear, old friend was the first yank out of the pit of hopelessness and others took turns pulling until I was back to the surface.

Truthfully, I had been pretty lax when it came to keeping up on the ibuprofen and Tylenol, with my nausea it is always really hard to take oral meds at all much less when I didn’t think they were helping but I was desperate. So I decided to get myself on a schedule and actually the swelling went down which thankfully relieved a lot of the pressure pretty quickly. That, or it had nothing to do with the dumb medicine and it was just God giving me the break I desperately needed and so many were asking for on my behalf. 

Then finally last Monday, exactly 4 weeks after surgery I woke up with some pep in my step. Something felt different… The pain was still there but it didn't take my breath away. Over the weekend I had been able to get up and around more, I was eating a little bit more each day, and I was getting stronger so I could start doing things for myself.

I looked in the mirror and I saw myself! What a huge day that was for my recovery- mentally and physically!

That same day I started outpatient physical therapy and I came home so encouraged with my progress. Don’t get me wrong… it was pathetic… I lifted a hollow PVC pipe 10 times and my arms turned into noodles but it was progress. At that point I didn’t care… I just needed to know I was moving forward!

I was excruciatingly sore afterwards but I knew the old saying… No pain, no gain. She also gave me some things to work on at home, one of which I have been thinking about a lot. She wanted me to rub my belly. My incisions are crazy sensitive and the lightest touch feels like rubbing a fork on freshly sunburned skin but also I think years of chronic abdominal pain makes me very protective of my tummy. I need to teach my body that it’s not always going to hurt when anything touches me or when I move for that matter. 

Since then, I have continued to progress pretty quickly! Over the weekend I was able to enjoy some time with my family, get out and do some errands, enjoy a perfect summer day and I even got to cook a little bit! Last Thursday at physical therapy I rode the stationary recumbent bike for 3 minutes (so slow it didn't register that I was pedaling for a whole minute) and walked just part of the sidewalk then yesterday I biked for 8 minutes, reaching over a mile and then walked around the building (it's a pretty small building but that's twice as far as I was able to do just days before!) Granted... After physical therapy yesterday my limbs were so weak they actually gave out and I ended up falling but it's amazing that I have the stamina and strength to progress so quickly that I'm making things collapse! I've been chronically sick for 15 years, basically bed bound for 6 months and I had major surgery 5 weeks ago... I'm impressed if I do say so myself...

But best of all... As the days have gone by I have realized something miraculous... Every pain and every symptom of IC that I battled hard for 15 years is...

.....

....

(I'm building the anticipation..)

...

..

.

..

...

....

.....

Gone. 

It scares me to even type that... It feels like it's too good to be true but it really is the truth... It's gone! 

Don't get me wrong... I still have a lot of recovery pain- varying levels of pain deep inside, pulling and pinching here and there, my incisions are still super tender and sensitive, my whole pelvic floor is really inflamed and painful- I can only sit in certain positions and on certain chairs and even then I can't sit for long, my whole body is weak and easily exhausted and my digestive tract is still trying to figure out it’s new route. I'm still taking quite a lot of medication and will have to gradually reduce everything so my body doesn't have violent or dangerous withdrawals. Clearly I still have a long way to go, they don’t say 6 month recovery for nothing…

But... Come on! So exciting, right?! I mean I think so... Actually... I think I'm still in shock or in disbelief because I just feel anxiety and fear when I think about my IC being gone. I feel a glimmer of anticipation and possibility but so many times I have felt that only to be crushed pretty quickly... 

I don't know what pain and symptoms will gradually get better and what might take the whole 6 months to really improve and what might always hurt but the old stuff is no where to be seen and the recovery side of things improves a tiny bit each day! 

Reading this over again I am disappointed that I wasn’t able to get even close to describing the hell I lived in that month after surgery or the complicated emotions I have, and am still feeling. I wish I would have written some things when I was in the depths of it but as much as I love my blog and my readers... Documenting those horrors was the last thing on my mind! I have never been pushed harder emotionally or physically. 

But maybe it's good that I can't describe exactly how horrible it was because now I'm in a totally new phase. I have to switch my brain from chronic pain mode to recovery mode. Instead of figuring out new ways to maintain pain and symptoms, I have to find the balance between pushing to strengthen and grow without going too hard and setting myself back. I can't lose sight of all the work I have to do but I have to notice all the accomplishments that seem little at the time but add up to create a complete recovery. 

That's the biggest thing of all... I have to focus on my new, healthy life that is coming! Not just a recovery from this surgery but a recovery from interstitial cystitis. 

My Grandma , who’s 87, went through some major health issues right before all of my problems started unraveling in January. I made a bunch of freezer meals and stuck little notes of encouragements in with them. She and my Grandpa came over the other day to celebrate Father’s Day and she gave me a card and then said something like, “someone very special gave me something when I was getting ready to go through something scary and unknown” I knew what she was about to hand me and I started crying instantly. 

She handed me the stack of notes I had written for her. She specified that she wanted them back and I could just borrow them. I could barely talk about it because I knew I would lose it. Later, when I was alone and feeling strong I read them. If I can get through the rest of my recovery with ¼ as much courage, strength, dignity, and joy as my Grandma got through her battle then I would be blessed indeed. 

Here are a few of my favorites... 

“Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying ‘I will try again tomorrow!’” – Mary Anne Radmacher

“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do.”- Eleanor Roosevelt

“Every day may not be good but there is good in every day!” –Author Unknown

“Do not fear for I am with you, do not be afraid for I am God. I will strengthen you, I will help you, I will uphold you with my victorious right hand.” – Isaiah 41:10

I read those notes several times but the last few day's they've stayed safely tucked in an envelope in my nightstand. This battle isn't nearly over but I think I'm winning! Funny how I wrote those things to a woman that I knew was stronger than she thought she was… Makes me wonder…

Anyway, I’m on the road to recovery! I think I’ve finally gone over the last hurdle and I’m hoping it’s smooth sailing from here on out! I will keep up my physical therapy twice a week, counseling once a week to help me through this huge life adjustment, and every day I will continue to push myself to be the best version of myself in each stage of this recovery. 

Another little thing I want to share with you all... Our little family has been waiting for a long time to get a puppy. It's been a dream my husband and I have both had but it seemed pretty unattainable over the last few years as my IC declined. My Mother-in-law breeds Golden Retrievers and each litter we would visit them and resist the temptation to smuggle one home in the diaper bag but it was never the right time for our family. 

But the first thing I remember my husband saying to me when I woke up was that his Mom's dog had her puppies while I was in surgery. That couldn't be a coincidence! So between that "sign", our sons complete adoration for dogs, and my amazing recovery progress we decided that now is the time. We all met and fell in love with one little pup in particular and she has our hearts already! We still have 3 weeks until she can come home but the planning and anticipation is almost as exciting! 

I know this might seem crazy to get a dog right when I'm starting to recover but I think having her will push me even more. She is pure love and joy, she brings us all together, and will force me to walk and get outside. 

More than that, she will be a part of the new life that is fast approaching that I never dared to dream I could have. She is a furry, happy, potentially destructive symbol of our new life that I fought so hard for! 

So dear readers, please meet the sweet addition to our family, Maja! (pronounced like Maya) Since she was born and I had this life changing surgery in May and my husband (and obviously our son) is Croatian we thought the name that means May in Croatian would be perfect! 

Does it get ANY more precious than this?!? Come on.... 

Me and my girl! It's about time there's another girl in the family! 

My husband just adores her already! 

A sample of what her life will be like! 

 Who knows the adventures the 4 of us will have!! I can't wait to really begin this life. I hope to never take a single moment for granted! 

DISCLAIMER: I am super excited about all the potential my post-op, post-recovery life has for me but I want to really stress the monstrosity of this whole thing. I did not make this decision lightly and it was 100 times worse than I could have imagined... and that's with my surgery going perfectly and having very few complications in the big scheme of things! So those of you with IC please don't see this as an easy out... It's not easy and it's not an out. I will never live a normal life and I will always struggle in some ways because my body is now not how God intended it to be. I battled IC for 15 years and it wasn't until my bladder was in total retention and stopped functioning that I even began considering this. Please get opinions from at least 2 doctors and thoroughly talk about your options, potential risks and side effect before you even start thinking about this.  

Carry On Baggage

Each day of my recovery has a new challenge and different pain that is center stage but I know eventually all of those things will start to get better until one day I am finally recovered. The difference between this surgery and others, the journey doesn’t stop there. 

This blog is a short explanation of my whole urostomy system- what it is, how it works, and how to care for it. I think I have glazed over this subject in the past so I get a lot of questions about it and as usual I thought I would just write a blog to answer some of the questions! I will warn you… the pictures are graphic. Before I had surgery I saw a couple pictures of stoma’s and was disgusted. Then the first couple times I saw mine I sobbed. Truthly, it looks a lot better than it did 3 weeks ago but still, if you are easily grossed out I would maybe skip this blog! Don’t say I didn’t warn you…

You can’t just remove a persons bladder and move on… you need a new way for your body to rid itself of the urine that your kidneys are busy making all day long. There are a few different ways of handling it and for me we went the direction of the illeal conduit. So they took out a piece of my small intestines and made it into an extension cord by connecting my ureters to one end and then pulling the other end out my lower abdomen, just a couple inches to right of my belly button, creating a stoma. So now that's where my urine comes out!  The problem is it has no sphincter or valve of any kind to regulate when the urine comes out. So that thing just does as it pleases…

There it it. My stoma. It's suppose to stick out like that, sends the pee forward and helps create a a good seal on the wafer.

You can see where the stoma is on my abdomen and the size, about the same as a quarter. You can also see my "pirate scar", the incision they used to remove my bladder. Apparently he did it like that so he wouldn't have to cut through as many muscles but I think it looks awesome! Arrrr!

My tummy's new look... 6 incisions and my stoma. 

I thought it would be a constant tiny trickle of urine but it actually has little spurts randomly, more or less often depending on how much fluid I’m drinking. So of course you couldn’t just leave that to empty, you would have a huge mess. So the 2014 solution (apparently it changes regularly) is an adhesive that goes around the stoma, called a wafer, that has a little plastic ring that a bag clips right onto. Just like Tupperware. I like to keep my pee nice and fresh…

There it is with just the wafer on. (I could  not for the life of me figure out how to turn this picture so just tilt your head!)

On a day to day basis I would just have the bag, which is just a bit bigger than a sandwich size Ziploc bag. It has a little valve at the bottom that I would keep shut and then just open when I need to empty it. Again depending on how much I’m drinking, I would empty it about every hour or so.

Closed! 

However, right now as I recover I'm in bed most of the time so I have it attached to a bed bag that holds way more urine. I just plug a tube into the bottom of my bag and open the valve and it just drains directly into the big bag. Later on I will just have it attached to the bed bag at night.

Attached to the bed bag!

It took me a while to find the right wafer, there are so many out there with all kinds of adhesive but once I found the one I have now it's all working great! I am still getting adjusted to the whole thing and my skin is still really tender so I’ve been changing the whole thing every 3 days but eventually I can keep the wafer on up to 7 days and just change my bag 2 times a week.

The whole process of changing the whole system was really overwhelming at first! No matter the amount of instruction we had from the urostomy specialty nurse and directions and diagrams we read my Mom and I were still really unprepared when we did the first change at home. I was in the shower and impulsively decided to remove it. With no experience and little preparation it was quiet the experience… But now we’ve got it down to like a 5 minute thing and I’m sure we will continue to get better at it until I can do it on my own and it just becomes a part of my routine.

There are two ways of removing my wafer: either with adhesive removal wipes or in the shower. If I do it with the adhesive removers then I have to use wound cleaner and gauze to clean the area really well so it’s kind of more work in some ways and I don’t feel as clean. So I prefer to take a shower and remove it then use the hand held sprayer to get all of the gunk off. You see… using some super complicated scientific solution reactor device (I’m just using impressive sounding words to make it sound like I know what I’m talking about) the wafer swells and creates this foam seal around the stoma to protect it from any excess urine that isn’t draining into the bag. Lately, since I’ve been laying down so much, the urine sits around the stoma for a while until it drains into the bag which means I have a lot of that weird goopy stuff. Once I’m up and around more it would just drain down and I’m hoping that will mean less of that business. 

So anyway… I remove the wafer and bag then clean my stoma and the area around it. It continuously drips urine so a nurse advised me to hold a tampon on the opening that the urine comes out of while I clean around it and then get things into place! It works great!

Handy tampon trick! 

Then I wipe the skin with a wipe that has some solution that creates kind of a barrier which protects my skin from the wafer. Meanwhile my mom or Zach, whoever is helping me, has measured my stoma with a paper template (it continues to get smaller and smaller until about 6 weeks post op so we have to measure everytime) and then cuts the hole in the wafer to be the perfect size to fit around my stoma. Eventually it will settle into the size it will always be and then I can order pre-cut wafers so we can skip this step. 

Then we just put the wafer onto my skin around my stoma! I press along the edges to make sure the adhesive is secure then I clip the bag into place and that’s it! What once, just 2 weeks ago, seemed like such a huge, overwhelming project is now a really simple and quick job!

This is how it looks all complete! I can put the bag any direction but have found it works best at an angle while laying down. (Couldn't figure out how to turn the picture again...)

I haven't gone any where yet and have only worn "normal" clothes a couple times so I am still trying to figure out that side of things. I've worn pregnancy bands a couple times which hide it really well and my friend sewed a pocket into one for the bag to go but I haven't tried that yet. So there's definitely a learning curve and it's been all about seeing a problem and finding creative ways to make it work! Overall I think this side of things has been going really well and it's definitely not as challenging and life changing as I thought it was going to be! 

I am breaking this whole recovery into several blogs because it’s overwhelming to think about writing everything and I’m really still deep in the physical (and emotional) recovery so there’s lots more to come but I’ve been getting a lot of questions about this so I thought I would summarize this real quick and show some pictures to help people understand. More to come real soon!

Oh the horror...

I had a radical cystectomy, my bladder and urethra removed, 18 days ago (for those of you that flourished in the 80's, there is another definition to the word radical than what you used/ still use.) This recovery has been harder than any nightmare could have forecast. Before surgery I met with several doctors and nurses, I read and researched, I found out as much as I could about the surgery, the recovery, and then living with it for the rest of my life but still I was in no way prepared for what was coming… 

There is so much to write and truth be told I am still in the trenches. You can’t tell your tale of heroism while you are still battling, you don’t even know if you have won or not yet… But if I waited until I was on the other side of this whole deal I’m afraid I wouldn’t remember the little details that make this story more than just a story. So I decided to break this up into several blogs starting with one just about the actual surgery and my hospital stay.

For most surgeries that would be half the story but for this one it’s really just the beginning…  

On May 19th I woke up at 4am. It was cold and dark that early in the morning and I wanted to dissolve under the hot spray of the shower and slowly slip into the drain with the soapy water. I huddled under that water reveling in it as it rinsed my normal body one last time. I watched the path it ran after picking up bubbles from my soapy head. It slowly slid down my neck, chest and stomach then crashed dramatically on the floor.

Hold on… I acknowledge that this is starting to sound like a steamy chapter from some harlequin romance novel you bought at a garage sale for a dime but bear with me, there is a point…

I was just more aware of my body that morning than usual. I’ve never had the best relationship with the old thing… It has caused me lots of pain over the years and never looked quite like I wanted it to but as I stood in the shower early that morning I knew I was looking at my familiar body for the last time. This “normal” body I referred to was far from perfect.

It had been through a lot in it's 26 years and 363 days. I have a smattering of freckles left as evidence of a happy childhood in the sunshine. There's a successful treasure map of stretch marks that led me to the loot of becoming a woman and then a mom, not the prettiest marks but ones that I wear proudly after earning them. My breasts. Oh those dear old things! By 27 I should still have a perky pair coveted by my elder women but these biddies have been through the ringer! Hormones- false and real- raging through me from an early age and a pregnancy then nursing a very enthusiastically thirsty baby for 14 months, and so many weight fluctuations over the years. They currently look like the dilapidated, 2 week old helium balloons that are dancing around my bedroom right now. They still have some life left in them but they are a little worse for wear and not flying as high as they once did… Of course as practically  every other woman in the world complains, I also have a decent amount of... Call it what you will... Flab, jiggle, blubber, lard, chub, chunk, fat. I have no dramatic story leading to that flaw except maybe a towering stack of bowls that were filled with ice cream late at night. However, the most dramatic imperfections are the scars that mar my body. When I remember to be deep and thoughtful I let them be a reminder to me that bad things will happen and though traces of those things may never leave your mind or soul they will fade and new memories will cover them up until just maybe they're harder to see or remember. But mainly I’m quite shallow and I just think of them as scars. Most of these scars were made by a doctor yielding a surgical knife, accessing my insides with hope. The results varied from extremes but the best one of all was the big one across my pubic bone that my son was pulled from but they are all as much a part of my “normal body” as my nose that matches my Moms and Grandmas and my feet that match my Dads.  

Now where was I? I watched as the soapy water raced other droplets down my totally imperfect, yet normal to me, body. I stayed in there until I had no more time. Then quickly dried off and got dressed in a comfy outfit. I dredged down the stairs and out to the car.

You wouldn’t believe the next part of the story unless you knew my family. Things just don’t go smoothly with us, almost ever. Early that morning I climbed into my car and snuggled into a blanket and prepared for the hour long drive to the world renowned University of Washington Medical Center. My husband was going to spend the night with me so he drove his car and I rode in my car (our super hip crossover that some might call a van but are totally incorrect because it’s clearly a crossover) with my Mom. I’m sure we were going over everything we were suppose to bring to make sure we weren’t forgetting anything as she put my car into reverse, before I knew it we were jolted and heard a bang. She had backed into my Dad’s wheelchair accessible van. It was pretty gentle so after a good chuckle about our luck I blew it off and said let’s just go. (There ended up being a sizable smash but I'm just pretending like there isn't because I only have so much room for stress and I'm al the limit.)

We got to the hospital right around 5:45 and of course had no problem finding a parking spot that early then I checked myself in and was called back into pre-op pretty quickly. They said I could only take one person back with me at a time. I didn’t like that. My Mom and my husband, they were my team. They both have their own jobs and their own strengths and weaknesses. I couldn’t make that decision so fortunately my husband chose for me and said my Mom could go with me first then they would switch.

They put me in a tiny little room separated by other with just curtains and then they left me to wait. Nothing happened for quite a while. There was a general sense of nervous energy buzzing around but it was relatively calm. Then one nurse came in and started asking me questions and pretty soon there was 5 medical people in my little cubicle asking me questions, putting things on me, covering me with hot air filled blankets, looking at my arms for veins, having me sign this or that, introducing themselves and shaking my hands. It was a lot. Not surprisingly my veins were feeling as overwhelmed as I was and they were in full on hiding. Those little guys have been through a lot over the years and they weren’t great to begin with. Several people scoured my arms for a vein until they eventually had to pull out an ultrasound machine to see my tiny, deep, rolling veins. After covering my arms with eventual bruises they finally found one tiny vein on the inside of my wrist just big enough to put a teensy IV in.

During all that hubbub it was made clear that they were going to do all pre-op stuff quick so my Mom kissed my head and with all the courage of a man diving into an alligator pool she told me she loved me and would see me soon just like she had before the 29 previous surgeries then before too long my husband was in the chair she had vacated. I don’t really remember much after getting the IV because they started some nice sleepy drugs. I’m sure my husband kissed me and whispered encouraging yet sweet things to me because I know him but I can’t be sure.

Once asleep they rolled me into the OR and got to work. First they put in a bigger IV to pour in all the meds to keep me safe and asleep for hours while the doctors worked.

The surgery went perfectly! They used a robot to get my bladder and urethra out of body while keeping my vagina intact. Then they cut a piece of my small intestines out, reconnected it without missing that piece and then hooked my ureters up to it and pulled the other end out of my abdomen. Then they folded it down like a turtleneck to make a stoma for the urine to come out of. I’m sure they did more things, maybe tidied things up here and there but that’s the jist of it. Either way, they did a great job and it was over much sooner than they predicted. But I didn’t know all that until much later…

Next thing I knew, I was waking up confused and in a lot of pain and very nauseated. My post-op nurse used the phrase “cool beans” frequently, way too frequently. Even though my pain was spiked and my nausea was fierce I was alert and not vomiting so they were getting ready to transport me up to my room and to my family when suddenly I was vomiting. 

Think about the last time you vomited... What muscles hurt the most? Your stomach? Yeah... I had just had those sliced and diced and rearranged! Oh the horror. 

They tried to get the vomiting under control but it was clear real quickly that wasn’t going to happen. So I vomited the whole time some guy pushed my bed up to the room I would be in for the next few days. 

Then I vomited once I got to that room. My husband and my Mom were there and that helped but I couldn’t stop. I threw up for almost 12 hours after surgery. I had nothing left, my body had to make up bile just so something could come out. Eventually I was just dry heaving and shaking with exhaustion and pain.

I had finally realized that I would vomit a few minutes after I would push the button that sent pain medication into my IV so I stopped pushing it. I was just hours after major, major surgery and I wouldn’t take any narcotics for over 6 hours.

I just remember lying in that dark room shaking and crying. I didn't want to do it anymore, I didn't think I could continue to. My mom, my husband, my dear cousin and multiple nurses took turns consoling me and holding random vessels for me to vomit into. Oh the horror.

After several attempts of adjusting meds they found something that worked, I finally stopped vomiting and the pain was some what controlled so I slept... For days.

I have no memories of Tuesday.

Or Wednesday although thanks to later told stories I know it was my birthday, my parents visited and my sister came later with party hats and festive decor then spent the night with me. I also vaguely remember (with help from my sister) a nurse taking me for my first walk and me telling him I was walking so slow I saw snails passing me and followed that with an amusing quip about slugs being indigenous to Washington (which I have no idea if that's true) and them basically being just snail strippers…

That same night a guy delivered me sherbert (I was finally off of just clear liquids and moved onto regular liquids) and while coming into my room he was talking to someone about a golf game. Then he set my treat on my tray and said “some cruise ship huh” trying to be sarcastic and funny about the fact that he was delivering me sherbert I guess… Anyway somehow in all that I thought he was telling me something bad happened so I said, “oh no!” He looked at me strange and then left. Then I looked at my sister serious as could be and said, “were any cruise ships harmed in the making of this sherbert?”

                                     

My sister and me celebrating my birthday in style. I am so very blessed by our friendship and sisterhood. She will always come when I call and even when I don't. She know me more than most people in the world and would literally do anything for me. Our bond is stronger than any other and cannot be broken. . 

Thursday is really foggy too... Probably more sleeping. Although I was with it enough to post a selfie... 

Then Friday came, it was kind of a momentous day for my recovery... I had been working with physical therapy and just started occupational therapy and man did I need it. I could barely stand without my knees buckling and had my physical therapist not caught me I would have fallen twice.

I couldn’t even get to the bathroom that was just steps away from my bed, which was super frustrating considering I was having diarrhea 24/7. So they brought in a bedside commode. I was sitting there when my occupational therapist first came in and I kept saying I was really dizzy and she just kept telling me to try to relax… Next thing I knew I was basically naked on the floor and the OT lady was asking me why I was on the floor…

That tiny incident sealed my fate.

Once you fall in a hospital you are labeled. You are suddenly wearing a giant scarlet letter. Each medical personnel that came into my room knew about my new label as a “faller” and I was instantly treated differently.

It’s not like you’re given much privacy or independence in the hospital ever but once you fall… You don’t breathe without having someone watch you. They even put the bed alarm on so I couldn’t get out of bed without them knowing. Like I was going to try to make a break for it?!?

Worst of all… I couldn’t go to the bathroom without them watching… remember the diarrhea I mentioned? Oh, that was just horrifying. I am a lady gosh darnit, not some cave woman! I do not burp or pass gas in front of people and usually I don’t even use any restroom other than my own to do such an act. Now I had to sit on that bedside commode and have TWO people watch me. Not just in the room, changing the sheets on my bed while I do my business but standing right in front of me, watching me. Oh the horror. I couldn’t do it at first. My stomach was cramping but my brain just couldn’t command the muscles to relax enough to go. This was my 4^th day with the same nurse… male nurse… and we had become chums! We chatted about this and that, he helped me with other things, emptied the blood out of drain that hung out of me and my catheter regularly but I just tried to ignore that and think of this guy as a super friendly waiter up until this point.

That night I was thrilled when it was time for shift change and my pal brought in my two new women nurses! What a relief! Of course the first time I felt the need to go the nurse assistant came in… who was also a man I had been chummy with up to this point. I begged him to call my nurse to come help instead so he did, “Hey I’m in room 7340 the patient would like you to come help her to the commode… Apparently I’m too tall to help,” I quickly told him it wasn’t his height that bothered me which he thought was hilarious.

Glad I could amuse the staff in my humiliation…

I get it! They do this all day long, actually they probably do even worse things throughout the day BUT I don’t. I never got used to that. The last full day I was at the hospital my nurse decided I had been doing well and I could not only go on the actual toilet but she could leave the bathroom with the door ajar. My husband didn’t agree. He didn’t trust that I was as strong as I was claiming.

Guess what? It’s even harder to… ehhem… have a bowel movement in front of your husband than a random guy nurse. Yes, we’ve been together for 7 years and he has had to help me do things that most husbands get to wait decades to do but this was just a new level. I got through by turning on the shower so that he at least couldn’t hear the sounds that my newly redesigned bowels were making… Oh the horror.

At least I got to shower after that. Wash away a weeks worth of sweat and tears as well as the shame of having to relieve myself in front of dozens of people. My hair and body felt so clean and fresh but the shame lingered….

Anyway. I got off track. So after my “fall” my physical therapist and occupational therapist had a meeting then talked to my doctors and they were convinced I was going to need to go to nursing home after I was discharged from the hospital but before I went home. I was really upset about that for a while and then I decided I was going to do whatever I needed to do to get well enough to go straight home. I had a lot of people praying for me physically and also emotionally while I was busy getting to work.

I talked to several different people who wanted to know every detail of my fall. I’m sure my nurse and the OT that was in there when it happened had piles of paperwork to do but I was more worried about why in the Pete I was falling. I was sitting when I fell, it wasn’t like my legs gave out like what had almost happened before… It was really more like I passed out. So that night, at shift change, I asked the nurses to start writing on the white board in my room when and what meds they gave me. I realized that any time my pain was about an 8 (basically every time they asked me what my pain was) and I wasn’t do for more narcotics they were just giving me IV ativan (a heavy duty muscle relaxer). I was just smashed all the time. I was sleeping on and off so much I couldn’t keep track of anything and my dear nurses were just trying to keep me comfortable and honestly it probably wasn’t a bad thing that I was basically unconscious the first 4 days of recovery. It wasn’t anyone’s fault but I just knew at that point I needed to take some control of the whole situation. After that the nurses and I worked together to keep all my meds a few hours apart so there was always something I could take if the pain or nausea got out of control and I wasn’t taking several things at a time making me a zombie.

By Saturday I was doing much better! They were able to remove my drain, which was the single most painful thing they did to me while awake. I couldn’t even believe how bad that hurt. If my understanding is correct, they put a tube with little holes on it in my abdomen so that any excess blood or anything can drain out into this grenade looking thing. It just hung from my stomach for days…It was disgusting. They would come and empty it and it made a disturbing sound as they squeezed the plastic bulb of blood to empty it. So when they removed it the doctor told me it might hurt and then yanked. I literally get shivers just thinking about it. Apparently the little holes on the edge of the tube can get caught on things… That’s all I will say. Once again… oh the horror. But it was a great sign that my body didn’t need it anymore (so they thought, more on that later) and they could take it out.

Once I recovered from that trauma I made it my goal in life to walk the halls as many times as I could. I finally made it to the goal of 3 a day and I even picked my speed up to where I actually may have won a race with a turtle, I left the snails in my dust!

3 walks. Boom. 

Truth be told I might still be in some rehab place if not for this man. He pushes me to be and do the very best and work the hardest I can. I rarely appreciate it at the time, in fact I usually get so mad when he pushes me but  where would I be if I didn't push the boundaries.  

I was also begging for a shower! Since I had fallen everyone was waiting for OT to approve it but it was memorial weekend and that meant they wouldn’t be there until Tuesday… After being in bed for 6 days, vomiting, having diarrhea, and feeling miserable the only thing in the world I wanted was a shower. Each time someone new came in I asked them what they thought about me showering. One time I mentioned it to my Mom while the medical assistant was in there and she was horrified and offended (not as horrified and offended as I was after this conversation) she said in a very thick accent, “You no need shower! I gave you many special baths. You shower later, I keep giving you special baths. You don’t want shower.” She was referring to the multiple times I had been happily napping when she would come in with an arm full of supplies and she would rip off my gown, sheets and blankets then wipe me with “special” cleaning wipes. I would try to cover up with any pillow or edge of blanket I could reach but she would quickly take them out of my reach saying, “must be very clean, just relax. Feels good.” For the first few “baths” I was so drugged I just slept through most of it and could try to ignore the complete awkwardness of the situation but the last one I was fully conscious and it was just plain weird. She did offer me a wipe to “clean my delicate area” as she called it but unfortunately the other times she didn’t deem me well enough to have such a luxury… So I laid in the bed naked, shivering, and pretty much traumatized for life. Oh the horror. Just when I thought it couldn’t get weirder… my nurse came in and my assailant aka the assistant said, “I ask her first.” No, she definitely didn’t. No matter how drugged or out of it I ever was I don’t think I would have ever agreed to such a…. experience.

Later when she couldn’t believe I didn’t consider her bath as “special” as she did I tried convincing her that I just never feel clean until I can be under warm water. I said, “it’s okay though my husband will be here tomorrow and he can help.” Then that sick freak was like, “ooooh, I see you have your husband help with you take special shower! Eh? Eh? Ha! You like special shower with husband!! Ha ha!” (after reading my tale about him “helping me” go to the bathroom and shower you know it wasn’t any kind of “special shower”) I didn’t even know what to say, I tried to bumble some defense and then just let it go so she would leave my room… Oh the horror. Just writing this makes me want to go take another shower.

Anyway, the pain was still really intense, getting up out of bed, walking and then getting back into bed sent my pain sky rocketing each time. I still needed a lot of medication for pain but my nausea had eased way up so I was almost exclusively on oral meds by then.

Sunday was even more progress! I was finally drinking and eating enough that they could take me off the IV fluids and when I went on walks I unhooked my bed bag catheter so we didn’t have anything extra to carry along with us! I even ate breakfast, lunch, dinner AND ice cream! I was just thriving!

So the next morning when my doctors came in for their morning rounds they deemed me ready to go home! A WHOLE DAY EARLY! I not only didn’t have to go to a rehab facility but I got to go home a day earlier than they had ever planned. Take that.

Of course that was day was full of approvals from different specialists including the physical therapist, occupational therapist, pharmacist (they had to teach me how to give myself my blood thinner shots), and another verification from the urologists.

My nurse was amazing that day and she kept things moving all day but allowed me to rest and still control my pain. She loaded us up with supplies, got me my new wheels (a walker), then I signed a million papers and we were on our way!

I remember sitting in my hospital bed reflecting while my mom took loads to the car and the nurses scuttle around making sure they had dotted every i and crossed every t, it was a momentous day. I kept thinking, the moment I left that hospital my new life would begin. I couldn’t wait to see what that new life had for me! It had been an unbelievably hard week and I knew the recovery had just begun but I had just finished a huge leg of the journey.

I had never been more excited to leave a hospital than I was that day! The moment my mom rolled the wheel chair outside I took a big breath of fresh air only to choke on some bus exhaust and then hurt my still fragile abdomen with coughs but still it was glorious! 

 

I think it was fate that my Mom was on her way when the doctor told me I could go home a day early. She was there with me all day as they instructed us on care at home and then she was there when I finally got to leave! She had her girl back. She didn’t care that her work had really just begun, she just wanted me home! 

Part II of this story is still in production... Coming soon. 

I want to take a second to thank all my amazing family and friends who helped me through this phase of my recovery! Some of you were there with me, some regularly calling and texting to check in, some were waiting for updates and all of you were constantly praying. I'm so thankful for every single one of you. I couldn't have done those 7 days in the hospital without any of you. Also a GIANT thank you to everyone who pitched in to not only take care of Titus but give him a really fun week so that my Mom and Zach didn't have to worry (or at least not worry too much) about him and could spend time with me at the hospital!! We have been so blessed throughout this whole thing!!