I'm alive!

Alright, there hasn’t been much word from us because we have been in survival mood. The first week was hard, the second week gets better and better as each day goes by and gain more and more of my autonomy back as well. I have to keep reminding myself to go slow and not over do it as the inside of me has a lot of healing still left to do.

So here’s a recap of how life has been for the past two weeks:

PART 1: THE HOSPITAL STAY

Initial thoughts after surgery: Holy Sh*t, what was I thinking?! Thank goodness I was prepared by people who had this surgery and that everyone shares that same sentiment. I had no idea how many stomach muscles you use for talking! It hurt so bad to even talk. That surprised me! Good thing I attended the rowing clinic days before as my family and I held on to that image of rowing patients rowing six weeks post op!

Pain Killers: So yeah, I’m calling myself a bad ass as I pretty much did this surgery with minimal pain killers. Not in the plan! Why you might ask? Well, it all has to do with blood circulation, which the nurses used a fancier word for, but I don’t remember what that word was. The number 1 goal/focus/concern of this surgery is keeping my flaps (tissue) alive and they stay alive with blood flow. So when she transplanted my gut to my chest, she had to disconnect my blood vessels, and then reconnect them to my chest - all of this is done at the microscopic level! So when surgery is complete, multiple steps are put in place to keep the blood flowing strong to the flaps. I’ll explain that process in a moment. So it was critical to keep my blood flow flowing. Pain killers naturally lower your blood pressure. lower blood pressure = lower blood flow, which could compromise the livelihood of my flaps and this whole surgery. So since my blood pressure was low, I couldn’t take any pain killers because they would make my blood pressure go even lower, compromising my flaps. So instead, I had to grin and bare it. It was pretty miserable. Thank goodness for amnesia and I’ve already forgotten just how painful it was, I just remember talking about how miserable I was. And if you are curious on what categorizes as low blood pressure, the goal was to get my top number on my blood pressure reading over 100. Mine never made it to 100 during my hospital stay.

off topic/on topic: there was also a type-o on my chart about when my next muscle relaxer was. I was given a muscle relaxer via IV while in my post-op room (which by the way, hurt like hell going in through the IV and it felt like it was the slowest drip possible…). I should have been able to get another dose about 8 hours later, by chart had it documented not until 10pm the following day! So not only was I not able to take pain killers, I also wasn’t given any muscle relaxers either. As soon as they noticed that error (the following morning), they did give me some muscle relaxers asap, but I went the first 12 hours or so without them.

Keeping the flaps alive: So how did they keep the flaps alive? Multiple interventions were put in place.

• Oxygen. They told us not to be alarmed when I wake up. I will be on oxygen, not because there was a complication and I can’t breathe, but they wanted to make sure there was enough oxygen flowing through my body to keep my blood flow going. So I was on Oxygen from the moment I got out of surgery until 6:00am the following morning. To my surprise, I did not mind the oxygen mask one bit. I thought it would feel clastrophobic, but it didn’t. I also think being on instant oxygen helped my body recovery from the anesthesia ten fold. I was only in post-op recovery room for an hour and half which is like a world record for me! I was much more alert and awake after this surgery then previous surgeries and did not need as many naps at home as I normally take. My hemorrhoids didn’t bother me either and I’m wondering if it was due to such a strong focus on blood flow. No idea the science behind that one, but I do feel like there was a link.

• Bear hug. I loved the bear hug. Some people I’ve read about, despised the bear hug and wanted it off of them asap. I embraced it and loved it. I’m typically cold when I wake up from anesthesia, but this time I had a nice blow up electric blanket type thing on me keeping me warm. It was awesome! Just like the oxygen, I woke up with the bear bug on me and had to keep it on until 6am the following morning. I think the temp of my bear hug was 104 degrees! Once again, keeping the body warm, keeps the blood flowing. Don’t want those flaps to die! Around 11pm that night, my body did start to regulate its temperature and began to think, “It’s getting hot in here!” So my nurse brought me a fan and pinned it to my bed. That helped so much. To help you visualize what a bear hug is, it is like a cheap inflatable pool float constantly being filled with warm air laying on top of you. They throw the hospital blanket over the bear hug to keep it from “blowing away.”

Lovenox shots. The last method on keeping the blood flowing is through Lovenox shots. I have to be poked daily for two weeks after surgery. These shots are something I’m familiar with as they are always part of my post op care due to my Factor V mutation of being at higher risk for blood clotting in legs. Dr. Potter has all of her patients who have this surgery go on Lovenox to decrease chance of blood clotting. She says the veins she connects back together are so small that even the tiniest of blockage could cause the flaps to die. So she takes no chances and puts all her patients on these lovely shots. They are typically given in the stomach, but due to the nature of this surgery, they are given in the upper leg. Why aren’t they always given there?! Oh my gosh, they are way less painful in the leg than they are in the stomach! Still aren’t fun, but doable. This time around, my mom and friends were in charge of stabbing me! Thank you Lala, Burk, and Kirsten!!

Plugged in. I also had monitors “plugged in” to my flaps monitoring the flow of my flaps 24/7. There is some fancy technology connected to these monitors as my doctor and her team area able to log in from their phones and check my numbers anytime they want to! A sense of safety in that knowing so many people were monitoring me at all times.

Keeping the incision closed. So since they “fileted” me in half and pulled my abdominal skin down to close it, it was critical I kept my body folded at a 30-45 degree angle at all times, so the incision would stay closed. So that meant, sleeping, eating, walking, etc. bent at all times. Down below is a picture of me walking with my walker. Talk about a glut work out! To minimize back pain, I had to walk with my knees bent in a hunch back position, with putting weight onto your heels. Man, it was a work out to walk. And they wanted me walking ASAP (to keep the blood flowing). I had to get up and walk 4-6 times/day! I also learned they considered me one of their shorter patients who needed a pediatric size walker for walking.

So they don’t tie the hospital gowns closed in the back because it’s just a pain to keep them tied. I’m also plugged into so many machines, not worth the hassel of tying and untying them along with not tangling the chords. So whenever I was forced to stand up and move, whoever was in my room at that time, got a full moon showing. So before I go walk the hall, the nurse tie another hospital gown around my back like a superwomen cape! Now, if I walk by you, you no longer get a viewing of my moon. So if you are wondering what’s going on in the picture below, you now know: I have two hospital gowns on, a tons of chords wrapped around me, and a children’s walker so I can walk being bent at a 45 degree angle.

Going to the bathroom. A big question people have going into this surgery, “am I able to wipe my own ass?” Well, for the most part yes, but with the over sized gown, iv’s, and chords all around me, it was nearly impossible for me to wipe myself and stay hunched over. One nurse asked if I needed assistance, I said, “seriously?” She said, “yes, I have no problem wiping you.” So I said, “okaaaaaay.” And ever since that moment, everytime I went to the bathroom, I had a nurse wipe me because it was just that much easier. The nurses had to walk me to and from the bathroom, so they were already there. I had such cool nurses that it was almost comical relief to this whole ordeal. If I wasn’t entangled in so many things, I could have done it…

Going pee. Going pee has always been hard for me to do after anesthesia. Since there is so much to do right after this surgery (oxygen and bear hug), I woke up to a catheter in me. I was actually relieved because I was dreading having to get up multiple times a night to go the bathroom after this surgery. So thank goodness for my catheter, I didn’t have to get up to go to the bathroom until it’s removal. My catheter got removed at the same time as my oxygen and bear hug. Thank goodness, getting a catheter removed does not hurt at all. It’s a quick uncomfortable feeling, but nothing after that. Now what hurt, was getting that darn catheter bandage removed off my leg that was holding the tube in place. Now that thing hurt! After I got my catheter removed, I should have been able to “void” aka pee on my own. But of course, I couldn’t. So they gave me a flow max to help and it worked, but only for 24 hours or so. Once it faded, I was no longer able to pee again on my own. Of course, they want you to be able to void on your own before they send you home. So they decided to give me more flo max to see if that helped. And then they set a timer, if you can’t void before this time, then they were going to put the catheter back in me! NO THANK YOU!!! catheter’s aren’t bad when they are inserted inside of you when you are asleep, but awake, different story! I was trying so hard to pee. Water faucet going on in the background, visualizations of water falls and warm water. It felt like nothing was working. Then all of a sudden, I went pee and everyone cheered!!! I had to continue to take flow max the next couple days to help me pee.

My nurses. My nurses deserve a huge shout out. They were unbelievable! In order to work with DIEP patients, they have to go through a special training. Theses nurses are choosing to be there and I could tell. Their care was phenomenal and I felt very comfortable in their care. So much that I told my family I could sleep alone at night. Leading up to this surgery, I told my family I did not want to be left alone at all, but once I saw the level of care I was receiving, I told them to go home and get good sleep at home.

Level of care. So this topic goes along with my nurses. I was a step down from ICU level of care. I believed they called it PCU. I had to be checked on every hour on the hour and nurses were only allowed to have two diep patients at a time. So their attention only had to be divided by me and one other patient. They were deligent and always on time. Whenever I needed to page them, they were in my room within 2-5 minutes of being paged. I even called a nurse to be with me as I coughed. I told her I was scared to cough and that it hurt so bad that I did not want to cough alone. So she stood by me and rubbed my back as I attempted to cough. Evidently coughing is a sign your lungs are expanding and recovering from being under anesthesia. No matter how positive coughing is, it still hurt like hell! I can’t even describe the pain, but I could feel every muscle in my abdominal region and I felt like every stitch was about to bust. The nurse reassured me coughing is safe, painful, but safe. So she stayed with me until I popped those lung sacks and I was so grateful for her being with me.

First night. The first night was tough. I told my family I would be okay by myself due to the level of care I was getting. No matter the level of care I was receiving, the care could not take away the pain. I remember being in pain that night, feeling alone. Even questioning myself “why did I tell them to leave?” (If I were to do it all over again, I would still tell them go home because that room was not set up for an overnight guess and with my nurses checking in on me every hour on the hour, there was no legit sleep). Then I felt all the love, the prayers, and energy everyone was sending me that night. No joke, I looked over in my room, and I thought my room was full of people. The energy was so strong and I knew at that time I was not alone. So thank you all for being with me that night!

Second night. Due to Factor V and my low blood pressure, they decided to keep me a second night for observations. I was relieved with that decision. I was not ready to go back home with the level of pain I was feeling and the level of care I was needing. So not only was I grateful for that extra night, but my care givers as well!

Vanilla Pudding. And to end on a fun note, whenever I ordered my meals from the hospital, I was sure to always order a vanilla pudding for Antonio. He loves vanilla pudding!