Post 18: Five weeks post surgery #1

Sorry I haven't written in a while. A lot has been going on, and I've had lots of ups and downs. My spirits have been so much higher after our Thanksgiving weekend and I am feeling the best I have yet today. I thought today would be a good day to write and try to update everyone a little bit. Spending the last 4 days with Phillip, Elise and our family for Thanksgiving helped me so much. I want to share a few good things that have made me happy along with some news from doctors appointments we've had during the past couple of weeks.
First off, I just want to say thank you again to everybody for all of the prayers, sweet messages, meals, flowers, phone calls....it has meant the world to me. Last night Phillip, Elise and I took a stroll around our little cul-de-sac. I am able to walk short distances now that some of my pain issues have been helped. (I'll tell you more about that in a bit)
Phillip spent all day Saturday putting Christmas lights on the house. He worked so hard making it look pretty for us! As we were walking down the street, I looked up at the house glowing with lights decorated for Christmas, and I just burst into tears. It was just so beautiful and I felt so grateful. How did I get so lucky? I have this amazing husband who loves me unconditionally, and thinks I am beautiful even when I feel disgusting. We have a beautiful, healthy baby girl who is smiling and giggling at me when I look at her. And we have a beautiful safe, warm place to call our home. Something inside of me changed and I knew everything was going to be ok. We have this little bump in the road to get over, but I still feel like the luckiest girl in the world.

In my last blog post I talked about a few challenges I was having. I'm happy to say a lot of those issues have become so much better! For several weeks I felt like I was doing nothing but measuring body fluids. It was becoming too much. I originally agreed to take part in a study to show how fluid intake effects the health of new ostomy patients. I had to record every ML. I drank, and record my output too. I emptied my ostomy bag, measured that, measured urine, and had to measure what came out of my drains. It was just gross and it really took a toll on me. I felt disgusting. I think it was important at first to show me how much water I needed to drink. They said over half of us who have this surgery would end up back in the hospital. I was determined to not let that happen to me. So seeing how much liquid I was losing did help me see how important it was to drink up! However, after recording this info for a few weeks, I asked if I could kindly be released from the study. I needed to not have this on my mind all the time. It would take so long measuring and cleaning up. I just couldn't do it anymore. The doctors were great and said I had been doing a good job and let me out of the study. Since I've stopped recording it, it has helped my spirits tremendously!! I don't have to think about it so much. Just as long as I make sure to drink at least 2500ML a day. I fill up my big Nalgene bottle throughout the day, and don't go to bed until I drink over 2 bottles full. Problem solved! :)
Another good thing is I visited a certified ostomy nurse at Shands, in Gainesville. Unfortunatey there are no certified ostomy nurses anywhere in this area. I have had 3 home nurses come out, and I know they were doing the best they could in trying to help me. But with something like this, you really need to see someone who specializes in ostomy care. The ostomy nurse helped teach us some tricks and it has helped my skin heal. With this pain gone I am able to be much more active. She really was a lifesaver. While we were at the doctor's office I alos had my drain removed! I was so HAPPY to get that thing out of me. I felt like I was always having to be so careful so it would not get pulled. It was bulky under my clothes and I was so happy to see that go!
Since some of my pain issues are gone I've been able to hold Elise more. I still place some pillows over my belly so she won't accidentally kick me where my inscisions are. This has made me so much happier. It has been so emotionally painful not to be able to hold my baby girl. I still can't be the active mom I was before the surgery quite yet. But it's a start!
Soon I really want to post about how I learned to get my ostomy appliance to properly fit. This issue was so diffucult emotionally and physically. There are a lot of details to cover, so I wil write about this more later.

Post 17: Update post surgery

Meredith here! Just wanted to let you all know I am alive and kicking. It's been 18 days post surgery. What a journey this has been for us so far. Mom and Phillip have been amazing and have been taking great care of me for the past two weeks at home. I've been wanting to write sooner, but haven't felt quite well enough yet. I can't say I am having good whole days yet, but I am having more and more good moments each day. I am healing a little bit more - emotionally and physically - each day. Some days are the lowest of lows, and I feel like I will never be better again and I don't know how much more I can take. But then I have to try and remember how far I've come, and how much I have improved since those first couple of weeks. I am a different person than I was 18 days ago for sure. I have to remember there is a light at the end of the tunnel. Elise helps me see it. I can have the worst day ever and her smile will completely transform my mood and spirit within minutes. We've been taking her to daycare while my mom takes care of me during the day. When Phillip gets off of work they pick her up and I get to see her for a little while each evening.

Most days have been tough, but when I do have a good moment, I use that time to try and eat something, make sure I am drinking enough fluids, brush my teeth or wash my face, or get up and try to walk a bit. I find that after I do anything small I am so exhausted that writing just hasn't fit into my day quite yet. I have so much to say, but I am still a bit overwhelmed and emotionally and physically drained.

Right now I am having 3 major challenges. I actually have MANY more....but I am trying to tackle just a couple at a time. Thinking past these right now will send me over the edge. I am just trying to focus on things I can control right now.

My first challenge, and biggest of all, is I am having a very difficult time not being able to hold or play with Elise and be the mommy that I want to be. It physically hurts my heart not to be able to pick her up when she needs me. I cry about it a lot. I try to be positive and tell myself that this will pass soon! But it is hard because I miss her so much. Just feeling her in my arms is all I want sometimes. I haven't held her in so long. I desperately needed to just hold my baby last night, so we figured out a way for it to work so I wouldn't be in pain. Last night was the first time I was able to really hold Elise. We put some pillows around my stomach and while she was sleeping we gently put her on the pillows so I could just wrap my arms around her. I still can't have her touching my stomach, but at least I could have her near enough so I could keep my face close to her head. I just kissed her hair and smelled her. She smelled so good and she was just so sweet as I sat there and watched her sleep in my arms. Thankfully I was able to stay in this position to hold her for almost an hour. My pain was getting too intense to hold her anymore but I did not want to let her go. I was very thankful for this time with her last night. It was so good for my heart and made me so happy. At that moment I was TRULY, purely happy again. I am getting kind of choked up writing this. I hope I will be able to do this every night now and eventually get rid of the pillows! :) I love that little girl so much.

My second challenge is trying to get my ostomy bag to fit. I will explain this more later, but this has been the source of most of my pain and stress. Once we get this figured out, I am going to write a detailed entry on this issue! I never knew how frustrating this part could be and no matter how much research I have done or how many different nurses who have tried different things, we are now just starting to get it to fit....we think. No two stomas are the same on anyone, and trying to get the ostomy bag to fit properly is basically trial and error. It is so important to get the right fit around your stoma or the stomach acid will leak out and eat your skin away. I have had nurses come out to my home for the past two weeks to help with this issue and we still have not been able to get the right fit yet. Once you do, you have to order all of your supplies and correct size....it's very complicated to explain and I will get into the details later. Let's just say, my bag has not been fitting, it has been leaking onto my skin all around my stoma and my skin has been burned away by the stomach acid. Keep in mind that I still have to continue to adhere a bag on top of this skin that is already raw while we try to heal it. I have been in excruciating amounts of pain and pray that we will get this figured out soon. I just got my new sample products in the mail a few minutes ago that will hopefully fit better, so as soon as Phillip gets home we are going to try the new products. Please pray for us that this works. I want my life back and I won't be able to do anything or be in less pain until I get this thing to fit.

My 3rd big issue is all of this liquid input/ output, measuring......it's hard. Anything I drink I have to measure and write on a chart. I have to empty my ostomy bag and measure and record that, measure my urine output, and I have a drain still attached to my stomach. I have to empty the drain, measure that liquid and record it as well. All I do is measure liquid all day. It is exhausting, nauseating, and makes it impossible to get all of this out of my mind for even a few minutes. I have to do this for a while because over 50% of new ostomy patients end up right back in the hospital due to dehydration. I have to make sure my input is equal to or greater than what comes out of me. Fun huh??? That takes up most of my day along with the timers that go off that tell me when my next medicine is due. Makes for some long days.

I have a lot more to say, but I am getting really tired and need a nap before Phillip and Elise get home. Hopefully we can have some more family time tonight! I will try to write more again soon. Love you all and thank you for your thoughts and prayers. You all have been an amazing support system to me. I am so grateful for you all. Thank you for also taking such good care of my mom and Phillip. Thank you for bringing them meals and helping them out so much so they can give me the best care they can. It means the world to us.

Post 16: Day Four After Surgery

Today was a tough day. Meredith's IV pump has been slowed down and has as a result the pumping sound has become much more annoying. During the day it is easy to ignore it but during the quiet night it is about enough to drive you crazy because it is a very inconsistent sound that varies in volume and tempo. A nurse finally ended up getting Meredith a pair of earplugs that helped her sleep much better.

This morning we had to see a lot of people and it got to be a little too much. The tech usually comes by at around 5am to take blood, they are followed by the first round of doctors that come through at around 6:30am, then comes the nurse shift change at 7am, then at about 7:30 the second round of doctors including the surgeon stops by to update us, then finally breakfast arrives, and a grad student stopped by and wanted to do a survey. The good news is the doctors said that she is doing great and that we will most likely get to go home tomorrow (Saturday). In addition to the usual morning visits we had our most comprehensive session with the stoma nurse so far and that took about an hour. We learned how to completely change and clean everything and talked about managing everything at home. After that another nurse stopped by and talked to us briefly about home care and finally they took Meredith completely off her IV's and we started to manage her pain by oral medication.

In addition to our busy morning we got to see our little girl again but in combination with our busy morning is was just a little too much for Meredith who was exhausted by this time. Meredith finally got to take a nap at about 3pm and once she was out and she was pretty much done for the day. I went to the main hospital food court across the street and got her a grilled chicken sandwich for dinner and we just relaxed for the rest of the evening.

For me the past several days has been very challenging. I want to be here and help Meredith through her recovery but it is no walk in the park. The couch/bed that they have in the room really isn't too bad to sleep on but as anyone who has stayed a night in a hospital knows, it is tough to get rest regardless of how comfortable you are. I have really learned a lot and think that it will really put me in a good position to continue help Meredith when we get home. The hardest part has definitely been being away from our little girl. It may sound weird but I cannot wait to be woken up by her cry at 3am! I really miss her and getting to see her these past 2 days has helped a lot but I am really ready to be at home with my family. I would say this to anyone that has a spouse that is going through a similar situation, it is not easy but it is worth it. I feel that constantly being by Meredith's side has helped her more than I can know and will only strengthen our relationship. Boy am I ready to be home!

Post 15: Third Day After Surgery

Doctors have said that Meredith is looking good! She was moved to a regular diet and can eat solid food again, but getting back in the swing of eating solids takes a little bit of time. Usually after a meal Meredith experiences some pain that seems to be caused by digestion and any gas causes quite a bit of discomfort. I also tried helping her empty her bag for the first time and I ended up making a mess! Fortunately the stoma nurse stopped by a little later in the day and educated us some more on the bag and we are starting to feel a little more confident about using it now.

Meredith also was able to have her catheter removed today. Each one of these small steps is really a blessing because between the oxygen, catheter, IV, pressure socks, painkiller PC, drain and ostomy bag all on top of a serious surgery you can get tangled up / claustrophobic and getting up to move around can really become a production. Today while trying to get Meredith up for a bit her drain got caught in the covers and I accidentally gave it a tug... I felt absolutely terrible and it really hurt Meredith. On top of that Meredith has also still been experiencing some of that diaphragm and shoulder pain that we think was caused by her surgery CO2. Despite the setbacks we still managed to get up and walk the "block" tonight.

Meredith's mom and sister brought Elise so we got to see our little girl Elise today and it really brightened my day, she really helped me recharge. Meredith really enjoyed getting to see her too, she really got us to refocus and we are excited as ever about getting home. They said that if everything keeps going well that we can expect to go home Sunday.

Post 14: Second Day After Surgery

Today started off pretty good. Meredith got to take her first sip of water in two days over the night and her ileostomy started producing so they put her on a clear liquid diet. First thing this morning I helped her up and went to the bathroom so she could brush her teeth, she was excited about that! After that she sat in her chair for a bit, we thought the day was off to a pretty good start. That unfortunately was the high point of the day. During laparoscopic surgery they pump you full of carbon dioxide so they can see what they are doing. This gas can irritate your phrenic nerve and cause some serious pain in her chest and shoulders. This pain has ended up being the primary source of Meredith's discomfort. Even with her morphine drip the pain caused by the gas has been difficult for her to manage. The pain is usually compounded when Meredith has a panic attack that causes labored breathing, it turns into a pretty rough cycle. The doctors have administered adavan in her iv to help calm her and it usually knocks her out.

The pain today has probably been the worst since the surgery and it along with the panic attacks has kept Meredith in the bed for most of the day. Though out the day Meredith has several "accessories" that have to be emptied. She currently still has a catheter, she has an ostomy bag that has to be emptied and she has a drain from the procedure still attached that moves fluid away from the areas effected by the procedure. In addition to having to be emptied they have been administering lovonox directly into her abdomen She was allowed to start her clear liquid diet so it was good for her to "eat" and her ostomy continued to produce. We talked to the stoma nurse today and she educated us on living with the ileostomy and gave us some tips. Tomorrow Meredith's mom is bringing Elise to visit and I cannot wait. She has really been a ray of sunshine through all of this.

Post 13: First Day After Surgery

Today was Meredith's first full day after surgery. Thankfully the morning started out on a high note, they removed her NG tube. It is a tube that goes through her nose and into her stomach and caused her quite a bit of discomfort. At this point she has not had any thing to drink since Sunday, her mouth is really dry and we have a little sponge on a stick to wet her mouth. Even with the tube removed they said she should not drink anything until her stomach "wakes up". To help with that process a physical therapist stopped by and encouraged us to get moving. Meredith was able to get up and sit in her chair for a little while and later in the day we walked her down the hall. It worked like a charm! Over the night she started "producing" so tomorrow she should be able to drink and start a clear liquid diet.

Post 12: Surgery Went Well!

Hello everyone, Phillip here, Meredith is resting so I am taking a shot at blogging. Today started early for us. We were up at 3am so we could make it to Shands by 6am. The hardest part of this morning was definitely leaving our little girl behind. Elise woke up just in time for us to feed her before we left. Meredith said that she flashed her little grin at her as she dozed back asleep, a perfect goodbye she said. The drive was pretty uneventful and the hour and a half flew by.We got to the hospital right on time and they took her back pretty quickly. They really had things moving along for it being so early in the morning. They let me back as everyone was coming by to make sure everything was in order. My dad was in town so he stopped by and said a prayer for us and let us know he loved us. We briefly met with the stoma nurse and she marked Meredith for her stoma X marks the spot! After that we met with the surgeon and the anesthesiologist, they gave her a little something to start calming her down and within seconds she just started chatting, I kissed her and they took her back...

Meredith's mom and sister joined me in the wait after they dropped Elise off at daycare and made the drive. The surgery lasted six hours and they kept her in recovery for another 3 hours before they let us see her. After the surgery the doctor came out and told us the operation went better than expected and we are now waiting for pathology results. The wait was really hard but it was good to finally see her. Unfortunately Meredith was having a pretty serious panic attack and it took a bit before they could give her something to calm her. She is resting now and doing much better.

I have really got to thank the staff at Shands. To this point they have exceeded my expectations and have really gone the extra step in helping feel that we are in good hands. Thank all of you for your thoughts and prayers, we will be home soon.