Monday, April 25, 2011

2 WEEKS POST OP

Well, for those of you that think I can't stay still or NOT do anything, I am here today to tell you that yes, at first I overdid it, but I have learned my lesson and it is NOT worth it so I can honestly tell you that for one week I left my house 2 times!!! Twice! Both for Dr. appointments. I had to go in b/c I got a bladder and kidney infection and started spiking a temperature. Over all, I have to say that I am doing pretty good. I sleep and sleep, I have NEVER watched so much tv in my entire life and not Mickey mouse clubhouse either! Shows that mom actually has never seen before, home makeover shows, TLC.

The kids have been fantastic. I didn't go to my parents like planned and came straight home after surgery and I am so glad. Steve has been wonderful, taking care of me, tucking me in, getting me tea, adjusting my pillows, making sure I take my pills, and yes, even giving me my shots in my butt. True love :) I love being with my family even though I can't run around, play, and do all the things I would love to, I can see them, talk to them and that makes my spirits better. I go around the house pointing to things, they pick them up and put them where they are supposed to go, Karlie puts my socks on, underwear, they stand on a chair when mom needs a hug and kiss, Karlie tucks me in on the couch, helps lift me up, puts band aids on me, and even gets me water. One night we were eating at the table and I didn't feel good or like eating and Luke looks at me "MOM, you HAVE to eat your food!" I state I am not hungry (like he always does), and he says "But it will make your stomach feel better mom!!!" Sooo cute. They have all been wonderful. Steve has been staying home from work to take care of me, and I cannot tell you how much stronger we have become through this whole experience from day one, he has been at my side, really has shown me that he really does love me.

EVEN our dog Remi. She sleeps on the couch with me every single night, and every time I go to the bathroom in the night, she walks me there, lays down on a towel at my feet and when I am done, walks me back to the couch and we go back to sleep. EVERY TIME!!! She has never really been a momma's girl, but I swear she knows and its like she is taking care of me too!

A couple set backs, kidney, bladder infection, cold sores, night sweats, and I was putting my socks on and heard a pop. I snapped some of my sutures in the layers underneath and now have a bulge coming into my incision. Went to Dr. to have checked, he said its ok right now as long as I don't pop too many b/c then my intestines will come into that hole and cause more problems.
They also pumped me so full of stool softeners and laxatives b/c its been over 10 days since I had gone. Pain meds make it worse, NOT good. But don't worry, my prayers got answered! :)
My first day home alone, I took Remi out to go pee, looked down and she was gone! She NEVER does this. Screaming for her, whistling, looking all over and by this point crying b/c I am in pain yelling for the dumb dog. Called Steve crying b/c Remi ran away and I can't find her, can't walk to go find her, so he said he will come home. 5 min. later some grandpa called and asked if I was looking for a little dog named Remi. He found her on the side of the road down a ways and he would bring her home. He pulls in and there I stand crying, I was so mad, trying to do this alone on my own!!!
Then Saturday woke to a nightmare of someone ripping my stomach apart and crawling down the side of the road in soooo much pain (dream) then really wake up, look down and there is blood all over my shirt. I must have scratched myself and ripped open my incision, it STILL won't stop leaking blood, trying to get ahold of Dr. to find out what to do. It was terrible, scary.

So after today I enter week 3. I am weaning off drugs so thats a good sign. Down to less than 1/2 of what I was when I left. Still in pain but it has to end someday!!! All I keep thinking about is that I should be dead, What is the Lord calling me to do and why did He give me another chance. I should have been the one crossing that 5k finish line and falling over dead at 30 years old....But I wasn't. I owe my life, all that I have, to the Lord. Times of crisis has turned me onto a new path, one directed by Him. I know that He will use me, yes, maybe even to write a book someday, I want to tell others about His amazing grace and love, if we would just open up our eyes to HIS truth, not the worldly values....We all have a piece missing in our lives, a void, one created BY HIM, that only He can fill and I am sooo glad that I have found my missing "peace".

Wednesday, April 20, 2011

SURGERY AT HENRY FORD-DETROIT

Well, I have made it. I am alive, I am home and for the most part, doing pretty good. I thought about the past week and thought I would relive it and journal it b/c for me, writing is therapy. I have no memory as most of my friends can confirm, so in 30 years I can look back to this point in my life and praise the Lord for where He has been in my life and thank Him for bringing me through it all. I tell you, there is NO WAY I could have ever survived this far without Him and after looking directly at my insides, my surgeon doesn't know how I ever survived this long. He said that anyone in my condition would have normally died a long time ago, it has been going on even longer than we thought, not since birth but longer than Lukes birth for sure, he would give it at least 5+ years that this thing has been "brewing" inside of me, just waiting to surface and waiting to kill me at any time, why it didn't....The surgeon just shrugs and looks mind blown and he said he couldn't believe his eyes he has never seen anything like it, I looked him right in the eye and said I am alive b/c of the good Lord, prayers, and that is all I Know. My friends, family, and so many people we don't even know have been praying for you Dr. Aboujould and we praise God for your hands that have helped me thus far!

Its Monday morning April 11. Surgery day. I couldn't eat after 10am Sunday morning so I am hungry. I HATE not eating and I thought the drive all the way to Detroit with no coffee would kill me. For the most part I was very at peace. I have a few break downs of emotional stress but overall I was facing it strong, I couldn't think any other way. Arrived just on time to surgical family waiting room and were quickly escorted to our surgery prep room. IV #1 started and fluids, IV #2 started just "incase" and then a 3rd arterial line (something I have never had before was started and sutured into my wrist so it wouldn't go anywhere) they use it for monitoring my blood pressure and blood loss. Cried with Steve, prayed, and after my nurse gave me a special "mojito cocktail" as he called it, I was gone.

I remember waking up to intense pain, crying, and begging someone to help me. I have no idea where I was but they kept telling me to relax it was all done. Why aren't they knocking me out then? The pain was so bad, all I remember saying is "help" I couldn't hardly say it b/c I lost my voice b/c of my breathing tube placed for surgery. After that, most is a blur. I was in ICU for 2 days for close monitoring. Surgery actually took 4 hours.

I transferred and ended with a joint room. *ALWAYS ask for a private room if you are going to have a long surgery and be there a long time I learned this a long time ago after my colon surgery and someone passed on the advice to me. I did ask my surgeon prior to surgery day so after 1/2 a day they realized they made a mistake and someone was discharged and i got my own room. Thank goodness b/c I was there for 5 more days.

I have NEVER had such a bad experience with nurses in all my life. They must really hate their job and it was so hard. No one was pleasant, helpful, kind, loving except for ONE and I thank the Lord that I had my husband at my side the whole time b/c most of those patients on that floor never have anyone and if the nurse is the only one they ever see, it has got to be even more depressing than it already is. It was obvious they were there for a job, they treated you like a number and it was very sad for me to see. They were rude, and even mocked another patient while I was walking by. "Suzie, if you keep complaining, I'm gonna start calling you samantha" another nurse said, and they all started laughing. Samantha was the patient in the room next to me and was discharged the day before. Call buttons, Monitors would go beeping for 10 min at a time no biggy!! Drug schedules were missed, orders were forgotten, I even threw up on myself and sat in it for 5 minutes with my call button pushed before anyone came.

I had rides to and from radiology that were like a nightmare. The driver must have thought they were in a race and would go soooo fast down hills, bumps, banging doors and when you just had your stomach cut open that is the LAST thing you want. I even cried on several occasions, begging them to slow down. I had my pain meds monitored so that hopefully I could make it thru the test before needing my next dose, one time I layed in a dark hall for 45 min. alone waiting for someone to take me back to my room. Transporters would walk by, even sit down in the chairs next to me watching me crying and said they couldn't take me b/c I wasn't their patient. I had 3 rides like that! I cried every single time! Everyone took well over triple the time they said it would take. Moving was bad, and when you are in pain, you just want to be in your room, not pushed around, pulled on, stand, walk, take in deep breathes...I can't!

I kept telling steve that I couldn't see the light, things weren't getting better....When was I going to feel a little better? By day 6 I finally could see it. Figured out what drugs I couldn't take, which ones made me even sicker, which ones finally worked for pain and things were beginning to look up. Day 7 I got my discharge papers, instructions, loaded up with my pain meds and was ready to go home. I felt ready. I wasn't scared anymore to go home, I KNEW that God would help get me there.

Hows it look? My Dr said that things were MUCH worse in there than he thought and my veins (which should be thin and soft) were tough and thick, coarse which to him, told him that my pressures have been high for a VERY long time, this has been going on even longer than we thought. He made a 7-8 inch cut that makes the shape of a "J" starting just below my sternum to my left lower side, an angle. He has to push all my intestines out of the way so I will be sore for a long time b/c the second you touch your intestines, they go into a temporary coma sleep. He placed the synthetic shunt (8mm) which has a higher rate of clotting and goes from 95% success rate to 85% compared to an 10mm. 10 couldn't be used b/c it would release tooooo much pressure and we don't want that b/c then the blood flow would reverse in the wrong direction and we could lose my liver. My internal pressures were 27. 14-16 considered dangerous, 16+ will bleed again and again. I was a ticking time bomb and no doubt would have bled again. He released that pressure from 27 to 11. He said it was working perfectly, text book, my veins in my throat were cut off so they will hopefully never be able to come back again, all the extra vessels created have already started to disappear! He also said that while he was in there, something happened that he has NEVER seen. My spleen is enormous and the same size as my liver, and when they are that big at the beginning he tapped it and it was hard, firm, tough like a rock. AS SOON as he placed that shunt, he saw something move, he asked an assisting surgeon to check my spleen b/c he thought he saw it move. (it can take MONTHS if not years for a spleen to go back to its original size after you have released its pressure) The assistant surgeon tapped it and it was soft, mooshy, and pliable, it deflated like a balloon and my left kidney which once was forced down into my pelvis b/c of it size, they had to find it a new "home" higher up in my abdomen. Dr Aboujould said it was amazing. He just stood and held his hand to his face shaking his head, I honestly do NOT know how you managed to stay alive this long....I told him its b/c I have the great Lord above and I had millions saying prayers on my behalf for that day and for my awesome surgeon and his hands to do a great job and I told him that I KNEW he would.

Learned I will never be able to go off my blood thinners, which was a bit discouraging...lifelong pokes...oh well. I can't complain b/c I am ALIVE!!!! How can I ever complain???? Really each of us could be dead at any moment I don't care what the age! The LORD has been my rock, my ground, and all of you have been my wings, helping to carry me through this. To all I say "THANK YOU, I LOVE YOU, PRAISE THE ALMIGHTY LORD!!!!" Thank you for all your prayers lifted when I didn't have the strength to go on and couldn't do it alone. I have suffered, but I always think to myself, I cannot believe how much pain I caused the LORD to go thru. If he went thru this much, I feel so bad, so thankful, so speechless and sooooooo blessed. By His Grace I am saved, He did the ultimate sacrifice and what a way to celebrate this Easter!!! It just took on a WHOLE new perspective and meaning for me b/c I firmly believe God knows, God is there with us, He feels our pain and sadness, he knows our struggles, afflictions b/c HE too has been there!!! He gave me time only by grace, but my time will end and I can't wait to thank Him and praise Him forever.

Friday, April 15, 2011

Hi all, Steve here.....learning how to face book and blog! i don't know what is more stressfull, facebook or blog! ;-) or caring for Lisa in this procedure. It has been a long few days. ups and downs. I believe Murphy is our best freind as always. (that being murphy's law) Lisa has had a good Wenesday and things looked good. Walking the hallways, eating her meals, having bowol movements.....etc.... Thursday was a step back. We started the day with a lot of pain, hic-ups causing pain to the stomach and turning into back up of the intestines. Lisa's stomach swelled inches in a matter of hours and the pain increased dramatically. She started dry heaving and vomitting all afternoon causing much more pain. It was the worst thing I had to watch in a long time. All she kept asking for is prayers...."please facebook everyone for prayers" that is when I showed her the emails of over 100 of you that have responded today with prayers are coming!!! thank you all soooo much. I have been on the giving end of prayers and wondered if this makes a difference....... being on the receiving end let me tell you___it DOES! Please keep it up!! Thank you sooo much!!! Back to facts----Lisa is having common problems with this type of surgery. Collapse of the lungs--due to laying down for surgery and after surery. Intestine problems--- doc's pushed alot of stuff around while they were in there.....and yeah, organs don't like being touched! It will take time to work through these problems and strength to over come them. we are hopefull that Lisa can keep positive and focused to get through this. She is mentally, physically at her ends and just wants this to be done...... now..... but we have to ride this boat to the dock.... I keep telling her there is no jumping off now!!!! It is hard work both for patient and me... I can not stand to watch suffering, but I know it is part of the recovery package. The main blessing is in the big picture.....her shunt is working perfectly and diverting the high pressure from the one system but also flowing through the liver!!! Praise the Lord. This is what we have asked for!.... I know we have a long road ahead of us, and again I (Steve) want to thank all of you, friends and family for all the support you have given!! I have never in my life felt so much love and support than now. Thank you, thank you, thank you!!!!!!!!!!!! I had hoped that we would be back home this weekend, but I think todays setbacks may add a day or two to our stay in detroit. I will keep doing my best on updates please call, email or text if I have left any one out....... Again, thank you all soooo much! Praise be to God, and his will be done!!!!!!!!!!!!!!!!!!

Sunday, April 10, 2011

Yes this is very complicated but it helps describe what is going to be done by showing you a picture. My synthetic shunt which will vary between 8mm-10mm in size depending on how much pressure needs to be alleviated. It will be placed between my splenic vein and kidney vein. I have 2 large clots that will always remain, one in my right portal vein (liver) and one in my superior messenteric vein (which feeds your intestines). These will not be removed b/c they have been in there so long they are now like rocks and have hardened. We are hoping to relieve the pressure behind my liver so that those "varicose veins" will no longer be created and I will not bleed again. He will also cut my coronary vein which is just behind my liver, this is where all that pressure goes up and creates those veins in my esophagus and stomach, therefor hopefully they will NEVER return. I have MANY new veins inside my body that have been created as the bodies way of defense to keep me alive, to get around the clots that have formed....These new veins are great b/c they kept me alive, but they can't handle all the pressure and eventually they bleed. This is going to be an OPEN vascular reconstruction surgery 5+ hours in length. He doesn't know if it going to be possible for sure until he "gets in there". I am afraid that he will cut me open and find out that it is worse in there than we thought and not be able to do it. This is what happened to me in 09 at U of M when I was a patient awaiting my shunt in my liver...It never happened and I am thankful to the Lord for that, but when you go in, thinking that this is going to be it, this is going to be the "fix", it is devastating to me emotionally b/c the struggle continues..... The Lord is my great physician and I pray that this time, it is it. This is the answer, this is the "fix" we are hoping it will be.

Thursday, April 7, 2011

3 DAY COUNTDOWN.....GETTING SCARED

I have been meaning to get on here for a long time....Kids sick, sister is in town, watching my nephews, time just goes....I don't know where sometimes but its amazing how quickly a week can pass and you have nothing accomplished to show for it. I have been LAZY!!! Just wanting to stay home, I want to stay in my pjs, watch movies, snuggle with the kids, do nothing! That is really strange to me b/c that is SOOO not me. I keep thinking to myself that I am doing great, then all of a sudden out of nowhere I start freaking out. Maybe its because the day is coming soon. Pre-op went well. It was a long 10 hour day, 3 hours in the car there and then 3 back with a 4 hour appointment. I got my chest xray, EKG, blood, met the anesthesiologist, and surgeon again. I have a nice drawing he made but can't seem to get it to download on here so I will try again some other time, b/c it definitely helps in explaining exactly what it is that I am going to have done. Synthetic "artificial" shunt placed between my splenic vein (a high pressure system) and tying into the kidney vein (a low pressure system) to balance out the pressures and release all that high pressure in my liver area creating all those veins and causing my bleeding. 5 hour surgery, cutting me open from top to bottom on my belly, with venous vascular reconstruction, leaving me 5-7 days in the hospital. I am afraid of the pain. I am crying already right now just thinking about being away from my kids....I know I have done it before for vacation but this is different. I hate being away, I worry whats happening to them even if I know they are in good hands. Motherly instinct and worry, the nurturing part of me that tells me that I want to do it, I want to be with them, when I know that I can't. I know I had surgery before but this one seems more scary to me. Probably b/c my colon surgery was when I was 20 and nieve, now I am in the medical field and know too much, and been through SOOOO much that I just don't want to do something else. I want to be done. Now. I don't want to have to do this to "fix" me. What if it doesn't.....Thats the good ol devil working on my negative side, fearing that its all going to be a waste and THEN what are we going to do!!!!!???? It took us this long to come to this conclusion with 3 different surgeons disagreeing, if this doesn't work I don't know whats going to happen to me. Then I look to the positive again, and thank the good ol Lord that I don't have cancer, that I am alive today after all that I have gone thru I could be dead by now. If I have a day where I am feeling sorry for myself, all I have to do is go to work for a day and see people that ARE dying, my newest friend just 24 with maybe months to live....Why? It breaks my heart to scan patients that don't even have a clue whats happening inside their own bodies, to see the poison killing them. They would trade places with me in a heartbeat! So I have to stay positive, I have to stay strong....This IS going to fix me, this IS going to be the end of it! I WILL get off my bloodthinners someday, I WILL NOT have another bleed again, I WILL NOT have to get my veins in my throat "wrapped" again and that my friends is sooooo much to be thankful for! I have been ignoring a bill on my counter for weeks ($1500) then this week my friends at work gave me a surprise "brunch" they all gave money to help me and it came to EXACTLY the same amount as my bill from my hospitalization when I had my bleed. CAN YOU SAY TO GOD BE THE GLORY!!!! I couldn't stop crying b/c I was overwhelmed by the love and support that they were showering on me...I was shaking and I was sooo surprised, had NO CLUE what was going on. What a great God we serve and How awesome to be a giver. I am not used to this "receiving" stuff, and I will be honest it makes me feel weird, but at the same time rejoice in the Lord, to see His hand at work, to see how many people really DO care and to know that I too can do the same thing for someone else when I am thru all of this! How much better will it be to give than receive!!!! Its all so exciting. I can't even begin to explain how many ways the Lord has revelled his hand, brings tears to my eyes. I am so undeserving, such a nothing, I have been humbled soo many times b/c so many love me and I am BLESSED beyond words. It has taught me sooo much. I know how it feels to be on this side of receiving and in the valley, and I will work harder when I am on the "good" side someday! "Earthly discomfort is a glad swap for heavenly peace"....God wanted to get my attention and trust me, He got it. What is it going to take to get yours? Is He whispering to you? Shouting? I keep telling myself when I am sad and wonder why....Though I hear nothing, He is speaking. Though I see nothing when I WANT, he is acting. With God there are no accidents and every incident is intended to bring us closer to each other and to HIM. Each day is a gift from Him and I am going to try my best to choose to use that day to glorify Him in all that I do. I know I will fail. I know I am weak and have plenty of faults, but each day I am going to wake up and start anew, try better, try harder to be better, not for me, for Him. That is all that matters.