Thursday, October 22, 2009

Catching Up

I haven't been sleeping well at nights at all. In fact it is 3:14am right now, and here I am on the computer. Last night as I layed in bed unable to fall asleep I began to think about how far I've come in the past 3 1/2 weeks. I find that I am getting very impatient with how slow my recovery has been, reminiscing helped.

 I remember having to have 2 poeple help me into bed because I couldn't lift my legs up or scoot myself I am getting in and out of bed with no help at all. I remember having to have help to make it to the bathroom every time and to sit I can go and sit all by myself. I remember what a chore it was to take my first few showers having both moms do everything and wash I can shower myself (with the help of a hand held nozzle and shower seat :) ). I remember how bad it hurt to simply talk those few days, or even laugh or sneeze or it isn't pain free, but very doable. I remember all the heavy pain meds I was getting around the I am almost cut completly off of the vicaden and subbing everything with Tylenol and Aleve. I remember what a chore walking the halls at the hospital were, and now I am able to walk around the house slowly without any help. I remember not being able to eat or keep anything I am eating myself out of house and home! :) I could keep going on and on with every small thing that has improved in the past weeks of recovery. Thinking back on all these things helps me to see how far I have come. I am still FAR from being strong and where I want to be, but it is important to me that I not get down, or if I get down not to stay that way. The road ahead is still very long, and I have found it best to just take it one day at a time and not think into the future at starting over and over again.

I mentioned in my last blog update about my sister Stephanie's visit. She left her family in Pensylvania and flew down to be with me for a few days once I got home from the hospital. What an amazing time we had together! I cherished every minute. She is expecting her third baby in Novenmber, and it is finally a boy! We are all very excited to finally get a boy in the family. Us girls definately dominate! Steph was so good at helping me. She was here for the first home ostomy change. She helped David at changing the bag for the first time without help from the nurses. They both did awesome, and was so gentle. David had already been introduced to it all, but it was all very new to Steph and she handled it so good. She was there to help me shower. She helped cook and clean and grocerie shopped, and patiently put up my fall decorations. (putting up with my pickyness) :) I could list even more things about my grandmother being here to help me this whole time. David and I don't know what we would do without her!  I am very lucky to have a wonderful family!

Sometimes I sit and look down and just stare at my new friend that is now a permanent fixture on my stomach. I am still not used to it. I hate looking at myself in the mirror and seeing what I now look like. I hate picturing how my husband sees me. I have a bag of poop hanging from my can he aver look at me and think that I am sexy again! I have many times apologized over and over at how I look, and how he has to sacrifice so much for my sake. I am so tired of it being about me already! Through it all he is there. So gentle and calm and that rock that I need. He is so wonderful to me, and I am very lucky! Back to my stoma, whom we started calling SID. (my Small Intestine Dilemma) :) SID can sometimes be very active at the wrong times. I have absolutely no control over him...he has his own mind. :) Sometimes he is very loud, and makes loud noises. It is very embarrassing! One of the times pastor was in the hospital visiting us it started making tons of noise. Gurgle gurgle loud, and all I could do is sit there and feel my face flush bright red. Another thing about it is that I can feel every output. It's a very wierd feeling. The bag gets in the way alot, and I am constantly aware of it. Any time I am out I feel like thats all anyone sees. My husband assures me it isn't that noticeable, but I don't believe him. :) All these things are still very new to me and will take some getting used to. How very thankful I am that this is not a permanent fixture in my life. How thankful I am that I do not have Crohns!!

Alot of poeple are asking what I can and can"t eat right now. For the first 2 weeks after surgery I was limited on some foods. Not anymore! :) I am actually eating alot! I am trying to get a good amount of protien at each meal. One of my doctors main concerns is that my protien levels get back up. I was very malnourished and anemic going into surgery. Part of the recovery requirments is for me to get all those numbers back up to normal. The doctor won't think about doing the next surgery till that happens. Water is another very inportant thing right now. I have to make sure to get alot of fluids down me so I don't get dehydrated. The job of my colon was to take the liquid out of the waste. It isn't there to do its job anymore, so I have to compensate for it by drinking lots. My grandma is very good at keeping my glass full and encouraging me to drink more. I gained 4 poulds the first week after I got home, and started getting worried I was going to gain a ton of weight. :) Don't know why, but I lost those four pounds and am staying at a steady weight of what I was before. I am eating alot, and getting stronger so I'm not gonna worry about it. It's just a number on a scale, right!

Day after day is passing by, and one of the hardest things for me is being cooped up. I get really antsy at seeing the same four walls. I also have to bum a ride off of everyone since I can't hop in the car and do what I need to do. I have been able to get out some, and am very thankful for each time! My imune system is still down, and so getting out at all is always a risk. I cannot afford to catch any sickness going around. I took up cross stitching to help pass the time. It is very time consumong, but I am enjoying it.

This past week my mom went up to Pensylvania to visit Steph and the girls. Katie was with us for the week. It was fun to have her here with us! She was able to come with me to church for the first time since my surgery on Sunday morning. It was so good to be there! You really don't realize how much you miss going to church till you can't go for weeks on end! I am continually reminded at how good god is! I have had a song stuck in my head..... "God's so good to give us so many blessings underserving thats what we are...we are to thank Him love and praise Him a little more today, a whole lot more tomorrow." A little song, but full of great truth!

In just these past few days I have been working hard at stengthening my core muscles back up. I am doing good at making it around the house without any help at all. I can't wait to be free from the walker that has helped me so much. The only thing is that my back is taking a tole from not having help. My low back muscles are very sore! Once again, its just about taking it one day at a time. Each day is different. I have my bad days, and better days. All in all I am doing good. One of my small incisions on the right side lost its stitches today. It looks really good, and is healing smoothly! We have a wedding to go to this weekend, and then starting Sundady is our churchs' Missions Conference. In my next blog I will post some pics on how I am looking these days post surgery. Friday will be four weeks already! Time really does fly!

I think this blog update will finally catch me up. Thank-you everyone for all the prayers for David and I! Please don't stop!! :) We are truely grateful!!

Sunday, October 18, 2009

Remainig Hospital Stay

It is Thursday morning at 2:30in the morning. David helps me get up to go to the bathroom (a major ordeal at this point) and believe it or not this was the first time since the surgery that I felt some strength. I asked David when I was done if he would take me on a walk down the halls. So there we were in the middle of the night walking the halls. That was the longest walk I had taken, almost 45 minutes long, and it felt very good! We got back to the room, and went back to bed very excited about the progress being made. Just a mere 3 hours later I woke up in a frenzy of body shakes. I was freezing cold. David piled blanket after blanket on top of me but still the shakes just got worse. For 45 minutes David and I did everything at all possible that we could do to help me. My jaw kept slamming down hard on my tongue, and my hands were shaking so fast I looked like I was having a seizure. David put warm hearts on me, was constantly rubbing my arms and thighs to try and calm me. It seemed nothing we did made any difference. This whole escapade was constant torture for me. Basically for a solid 45 minutes every muscle in my body was tensed up. I don’t think I need to explain how bad it hurt to have all the muscles in my abdomen area tense for 45 minutes. After about 30 minutes of getting nowhere David called the nurses in. Very soon I had 4-5 of them surrounding my bed. They were watching my heart rate and temperature rise very quickly. Once they started giving me oxygen I could slowly start feeling my body relax and the body shakes calm down slowly. My whole abdomen area ached, and I could strongly feel each one of my incisions. Basically what happened is that my body spiked from a normal 98 degrees to almost 104 degrees in those short 45 minutes of time. I had no control.

So here it is Thursday morning, and I feel almost worse than I did the first day after surgery. After the doctor saw me he told us they are worried about the possibility of phenomena. They worried about my lungs collapsing. Immediately David and my family were worried and begging me to get up and walk more and do the breathing machine more and eat more. I wanted too…how I did want to. I hated feeling so bad and being so weak. The doctor put me on even stronger pain meds from the night before, and it made me so drowsy and weak and tired. On top of that I couldn’t eat anything. I think I tried eating 3 times on Thursday, and threw up each time. Thursday, Friday, and Saturday was three continuous days of high fever, nausea, and being so weak I could barely make to the bathroom and back to the bed. Disagreements of whether I was fighting hard enough or not those three days finally came to an end on Sunday morning when my fever broke, and I was able to ingest some applesauce without becoming sick. Those three days were full of emotions from one end to the other. All of the family was so worried about me getting worse. We were all so thankful once I started pulling through, and gaining some strength. Saturday night the doctor told me he would give me one more night, and if nothing changed they would start feeding me through IV. It had been 3 days and 3 nights since I had kept anything down. Praise the Lord that Sunday morning I took a turn for the better!

In those three days I had 2 CT scans done and 2 chest x-rays done. All the doctors could tell us is that I just developed some sort of infection, and it just had to run its course. What infection and where, they did not know. Sunday I started to eat very small portions of soft foods. It felt good to finally feel good! I was able to get up and walk 3 times that day. Monday was just another day of continued healing, and I was getting very anxious to get home!! After being in the hospital for 10 long days I went home on Monday afternoon.

Tuesday, just after I got home, my sister Stephanie flew down from Pennsylvania to be with me for a few days. Although it wasn’t for long, I cherished the time I had with her! Her and my little sister Katie took me in a wheel chair to Kohl’s to buy all new underwear. None of what I had was conducive to the larger incision that I have now. Steph also put up all my fall decorations around the house. This is my most favorite time of year. I just love all the colors and smells! She was very patient with me instructing her from the chair of what to put where. That’s what sisters are for, right! My grandma came down the Friday before I got out of the hospital.. She had anticipated I would already be home, and she wanted to be her for me when I got home. She came down here for the long hall. She doesn’t go back home till the middle of November! How wonderful it has been to have her here! She has just been awesome at taking care of me. She does very well at keeping lots of water done me constantly! That’s what I need. David asked me just the other day, “So…is grandma gonna come down for all of your surgeries?” :) He kept on talking about how he couldn’t imagine what the house would look like, or what kind of food we would be eating if he had to take care of it all. It is comical to think about, and I give him a hard time. The point in saying this is that we are very thankful and blessed to have grandma here with us to help!

My surgery was 3 weeks ago yesterday, and I am doing very well! I want to write one more blog update and tell in more detail how I am doing right now. Will try and finish that up in the next couple days. It feels like I got so far behind, and I just can’t get caught up.

One more quick thing I wanted to add. David and I have two praise reports to tell. First off, he got a job! It is not the “ideal” job that he may have wanted, but it is a job none the less, and we are very thankful!! Secondly, I was accepted into the Texas high risk pool insurance. No other insurance company would take me on, and this was our last resort. If you remember reading earlier in one of my blogs I told about the money the Lord provided to pay the first 3 months premium for this insurance. We had to pay that sum up front before we even knew whether or not I was accepted. Praise the Lord that I was!! What an answer to prayer, and a burden lifted that it was!

Well, that’s all for now. Thank-you for reading, and for each and every one of your prayers!! They are cherished!

Wednesday, October 14, 2009

First days after surgery

Two weeks and ----- days since my last blog update. I am very sorry for the delay of my updates from my surgery. I don’t believe I will be able to write about everything from the past two weeks in one update, but I will start at the beginning.

September 25th… is 4:15 on this Friday morning and the alarm is beeping away. Today is the day of my first major surgery, and my nerves are on end! David and I are scheduled to be at the hospital for pre-op at 5:30am. The first thing that we did before we got out of bed was hold on to each other and pray. It was a special time for me to remember back on. Today was very scary for both me and him! Once we got to the hospital things moved along rather quickly. It seemed like I was ready and in a room waiting to go back in no time. My mom and Katie came up early that morning along with mom and dad Ronson to see and be with me. All the nurses kept commenting on how special it was to have so much support and family around…..and it was! I have to thank each and every one of you for your prayers on that day. I can honestly say that the Lord gave me extra special peace going into the surgery that morning. There is no way that I would have been so calm on my own! The Lord was definitely with me!

I woke up from surgery in a lot of pain. The nurse that was assigned to me during the recovery post-op was the sweetest lady….I am so thankful! Waking up from anesthesia is a funny thing.  At the time you don’t realize how out of it you still really are. The only thing that really brings you to any amount of thought is the pain. Your mind is constantly pulling that feeling to the front and foremost of your brain. My sweet nurse gave me this button and put it in my hand. She told me that whenever it hurts to push the button. Then I asked her, “How many times can I push it?” Her response should not have been “as much as you want”.  Seriously, I laid there at one point and pushed the button over and over and over….probably 20 times at least. And then a couple minutes later I’m pushing it over and over and over again. Once I told her, “the button isn’t working”. She just laughed.  My time in the recovery post-op was supposed to be only 1-2 hrs. I ended up being in there for almost 5! Try and think about David during this time. The 4 hr surgery is done, and the doctor tells him he can see me soon after my short time in the post-op. Him and the whole family waited anxiously all afternoon for me to get out. In the post-op recovery they ran six big bags of fluid in me very quickly, and my body wasn’t putting any of it back out. After a very long afternoon for both me and the family I got wheeled to my room at 5:30 pm that night. David was so happy and relieved to see me!

Below is a before and after picture of my belly. At one of my pre-op visits they marked me where they would place the stoma. That is the blue mark on me in the first picture. The second one if you look closely you can see all six of the incision sites.

I can honestly say that the incisions are the very least of the pain that I felt. Although they may look bad, the amount of work that they did on the inside far exceeds these small cuts. The colon (which is the large intestine) had to be cut completely free from everything and removed from the body. In turn the small intestine and everything around it has new “neighbors” and has to be reattached to abdominal walls. Basically, my point is that the work done on the inside was very intense, and you feel it! It is 90% of the pain, and very painful!

Saturday was a hard day for me. It was the day I realized how out of it I was. I honestly wasn’t prepared mentally for how bad of shape I would be in. It was hard for me to even look at myself and how bad I looked. I was immediately depressed about my self image. I felt like I would never be normal again. It is over 2 weeks later now, and I can still honestly say that I still struggle quite a bit with my self image. I secretly hate my stoma and ileostomy and can’t wait for the day it is gone! I do know that these things are just something I have to live with and deal with for now, but that doesn’t mean I have to like it, does it? Ok, so on top of all this the doctor came in and told David and I that he thought that the last 8 inches of my small intestine had the disease called Crohns in it. This news hit David and I very hard! We wouldn’t be able to get the results for a few more days. The news of that possibility was very hard on both of us! I couldn’t at that moment even think of the many things we would have to deal with if the results came back positive. My husband (though he probably wouldn’t admit it) was such a strong support to me every single day! I praise the Lord for him!! It was this night, just one day after the surgery that I started feeling all the anxiety that I thought I should have felt going into the surgery. I don’t think that David or I slept all night that night. I felt an overwhelming sense that that night was going to be my last. It was so very real to me at the time and in that moment that I didn’t want to even close my eyes I was so scared. We tried calling pastor to talk to him but couldn’t get through. We talked to dad Ronson on speaker probably for 30 minutes. David read to me from the Bible chapter after chapter, and we prayed together over and over. I talked to my mom for a while, but no peace. I felt so scared and without any peace at all. David was wonderful, and did everything he could do. Finally we called our used to be youth pastor at 1 in the morning, and he talked to us for almost an hour on speaker. It did help a little by the end of the conversation. He told David to get in the bed with me and wrap his arms around me. That did help me to feel safe, and I dosed off and on for a couple hours. That night seemed to go on forever, and I couldn’t wait till the morning.

Sunday was just another day. Lots of pain, but nothing out of the ordinary. According to the doctors I was progressing well. We still awaited the news about the Crohns. This waiting was a huge burden on us each day we waited. Today was the day of my first shower after the surgery. My mom and mother-in-law were there to do that very hard job. They were wonderful, and took care of me very well. I can’t emphasize enough how helpless I was. I felt like I couldn’t do anything for myself. I guess really I didn’t realize how much you use all of your core muscles, and without them…..its just hard to do anything. I was soon a big fan of all those wonderful pain meds they were pumping in me! Rachael, my sister-in-law spent the night with me tonight. This night I was having a lot of the same feelings of being scared and anxious like the night before. It was nice to have a girlfriend there to talk to. Rachael started reading to me from the Bible too. She just read a lot of the Psalms and Proverbs, and a lot of the promises of the Lord. She was reading in Proverbs 3, and read this set of verses that spoke to me, and I claimed them, and I had her read them over and over. It was Proverbs 3:23-26a “Then shalt thou walk in thy way safely, and thy foot shall not stumble. When thou liest down, thou shalt not be afraid: yea, thou shalt lie down, and thy sleep shall be sweet. Be not afraid of sudden fear, neither of the desolation of the wicked, when it cometh. For the Lord shall be thy confidence,….”

Monday and Tuesday were uneventful days. Each day anxiously awaiting the news about having Crohns. Each day I received so much support from family and friends! My room was filled with flowers, and cards from people who loves and cares so much about me. On top of it all I slowly started crashing emotionally. 

On Wednesday I finally lost it, and after a sting of events I finally broke down. I cried, no I should say I wept out loud to David for a good 15 minutes, and then to my mom for just as long again. It did feel good to just get it out. It was kinda funny that in the middle of this breakdown I was having the doctor comes to inform us that the results for the Crohns was negative. Praise the Lord!! Everything was in such a tizzy I couldn’t even be as happy as I wanted to be.  Ok, yes, I am a girl! Oh, may I also mention that right then in the middle of all this pastor shows up too. David leans his head in and tells me, and I just started shaking my head and crying more. In my head I almost wanted to laugh how everything was happening all at once, and also how out of control I was….!

I will have to say these first few days after surgery were hard in many different ways, and I am very glad to have them done and over with. The Lord is very good, and he was with us every step of the way. Thank-you to every one of you for your prayers for David and I during this time! The Lord was with us. We are very grateful!

More on the rest of my hospital stay in a little bit. Sorry it has taken so long to update you all.