Yesterday, I went to Chicago to the University of IL hospital for a follow up from surgery. All is as well and healing as expected. Still sore, swollen , and bruised. He explained that with me being thin, that is the way it is since there is not much fat to absorb the "trauma" and everything.
After the appt, we went to the floor I had stayed on last week because we left my backpack and machine for my TPN in my room. I had called there on Sat. to have them put it up till I could get there to get it picked up. The nurse that had me Saturday was there working and we talked for a few minutes. Good to visit, but it was nice to say goodbye.
After leaving there, we headed to University of Chicago hospital for a test I had to have done. It calculates how many calories my body burns while I'm lying still. It was quit an interesting test. They had me lie down in a bed and then put this big plastic bubble over my face. I was not allowed to talk, move, or sleep during the 40 minutes of testing. Around the last 20 minutes I began to get really claustrophobic. I remained calm because if I panicked or moved or talked it would mess the testing up and I didn't want to have to redue this! There was the nurse and another lady in the room through out the testing. Shane kept conversation going with them up to the last 15 min. That really helped to keep my mind off the test and being claustrophobic, but the last 15 minutes when no one was talking very much, I really wanted to come out from under this plastic bubble thing! The nurse counted down every so often and that at least let me know I was getting closer. The nurse went over everything before we left and explained it and was very helpful and useful for me to have this test done. They estimate my calories I need for my TPN, but with the test they know now how much to actually put in my TPN. They now know they need to add more calories to the TPN, as I am using more calories than they thought. Bring on the steak n taters!!
We stopped at McDonald's on the way home so I could have a berry cherry smoothie. Yummy, but still not as good as the frozen strawberry lemonade and the the YUMMY MANGO smoothie. They don't have any fruit chunks in it so I'm able to enjoy them.:) MMMMM good!:))
We got home and I collapsed in bed. Ahh, much needed after that trip! Left at 7:30am and home by 6pm. A loooong day. God is SOOO very good to me! He blesses me each and everyday! So thankful for HIS love for me and that HE cares and is with me every step I take.
Thursday, May 24, 2012
Saturday, May 19, 2012
Back Home:)
I went to Chicago to have the pacemaker moved back up in surgery yesterday. It was suppose to be done laproscopically, but in recovery noticed that the surgeon used the same scar he had originally made back in September 2010 to put the pacemaker in. The scar is about 2 1/2 inches. So needless to say, I am very sore and in pain that I sure wasn't expecting.
After recovery, I wasn't put up on 5 East like I normally am. I was put in the Walter Payton Liver Center on 7 West since they were so busy on 5. Shane and I were nervous about being up on a different floor with nurses that we hadn't had before, but I did end up with a roommate who was so sweet. She is my age, 2 children, diabetic, and recently diagnosed with Gastroparesis. I felt so bad for her, with her nausea and dry heaving. I can relate to that! I gave her my email address and phone number so she can contact me. I pray I was a help to her. May God touch her!
By the way, they did not do the full thickness biopsy due to it being a contaminated surgery and the pacemaker relocation surgery being a clean one. No need for any bigger issues, thank you very much. Got to talk with University of Chicago regarding having it done though, and it is a pelvic floor specialist who will be doing it.
Oh does it feel so good to be at home and in my own bed. Still need help getting up, but okay after I get up. Sitting down is a bit tricky also. Enjoying being with my honey and precious kiddos. Even though I was gone just for a day, I still missed them like crazy!
Thank the Lord for a smooth surgery and no complications!!! He is so good to me! I am so grateful to be called a Daughter of the King of Kings. I love HIM and want to give Him my best in all I do. I want to serve HIM with all my heart, mind, soul, body, and strength.
After recovery, I wasn't put up on 5 East like I normally am. I was put in the Walter Payton Liver Center on 7 West since they were so busy on 5. Shane and I were nervous about being up on a different floor with nurses that we hadn't had before, but I did end up with a roommate who was so sweet. She is my age, 2 children, diabetic, and recently diagnosed with Gastroparesis. I felt so bad for her, with her nausea and dry heaving. I can relate to that! I gave her my email address and phone number so she can contact me. I pray I was a help to her. May God touch her!
By the way, they did not do the full thickness biopsy due to it being a contaminated surgery and the pacemaker relocation surgery being a clean one. No need for any bigger issues, thank you very much. Got to talk with University of Chicago regarding having it done though, and it is a pelvic floor specialist who will be doing it.
Oh does it feel so good to be at home and in my own bed. Still need help getting up, but okay after I get up. Sitting down is a bit tricky also. Enjoying being with my honey and precious kiddos. Even though I was gone just for a day, I still missed them like crazy!
Thank the Lord for a smooth surgery and no complications!!! He is so good to me! I am so grateful to be called a Daughter of the King of Kings. I love HIM and want to give Him my best in all I do. I want to serve HIM with all my heart, mind, soul, body, and strength.
Wednesday, May 16, 2012
A much needed update
I am sorry for not updating sooner. Instead of going to Chicago for any of my tube issues, I am going to be going to Moline. It is alot closer to home and the staff and GI Dr. are wonderful.
I went last Thursday and had the tubes switched out and in his office while looking at the tubes I asked if he knew what a low profile Mic-Key button was and he said YES and they had them there!! He even knew of my GI Dr. in Chicago. :) He had me wait a bit and they took me back to the outpatient unit which is in the same building. It was like a hospital outpatient area with the cubicles,carts,gowns and yes-IV's. They got me ready to go and took me back for the procedure. They placed them with the endoscope. He had done the g-tube then as he was working on the j-tube switching it out I began retching bad and got a tear in my esophagus. He placed an endoclip to bring it together to heal and stop the bleeding. Once I was back in the cubicle, the Dr.came back and talked with Shane And I and explained what happened and that I was to have nothing to eat or DRINK by mouth till Saturday. I asked about ice chips and he was ok with it.:) I felt pretty good. Got home and in bed and about 8 or so began chilling and running a fever. I called my wonderful In Home Care Nurse and she helped me out by calling the Dr. to get suggestions on what to do. I was talking out of my head and Shane said that I gave him a pretty good scare. Thank the Lord He is a prayer answering God and I was not up all night fighting a temp. It broke and I was able to go to sleep for a good part of the night. Besides a bit of a sore throat I did good over the weekend. The doctor from Moline even called to check on me the next day!
I had a GREAT Mother's Day thanks to my 3 beautiful miracles. They know how to put a smile on my face. With the song they sang, the many cards they made, the hugs and kisses and gifts they gave. Kelsey spent money of her own to buy me extra gifts, some stuff to pamper me and a skirt and slippers. She has such a giving heart and is growing up way too quickly. I couldn't have asked for any better kids. I love them all and all three of their personalities (all so different).
On Friday, I will be having the surgery to have my pacemaker moved up and off of my hip bone. That will feel much better once it is off that hip. Both Chicago Dr's felt it was best for now to keep the pacemaker in rather than remove it. Back in February, when they switched the tubes out, I had the pacemaker turned off and during that time was extremely nauseated. I was on the couch or in bed most of the time. At least for now it is at least helping with that and I am able to function. With this being a laproscopic surgery, they will not be opening me up so the full thickness biopsy will not be able to be done till another time. Bummer for me, because that means going back under again, hospital stay,etc....
To God be the glory for all HE has done and is going to do! He is so good to me! I am so thankful for HIS blessings. So glad HE is a prayer answering God!:)
I went last Thursday and had the tubes switched out and in his office while looking at the tubes I asked if he knew what a low profile Mic-Key button was and he said YES and they had them there!! He even knew of my GI Dr. in Chicago. :) He had me wait a bit and they took me back to the outpatient unit which is in the same building. It was like a hospital outpatient area with the cubicles,carts,gowns and yes-IV's. They got me ready to go and took me back for the procedure. They placed them with the endoscope. He had done the g-tube then as he was working on the j-tube switching it out I began retching bad and got a tear in my esophagus. He placed an endoclip to bring it together to heal and stop the bleeding. Once I was back in the cubicle, the Dr.came back and talked with Shane And I and explained what happened and that I was to have nothing to eat or DRINK by mouth till Saturday. I asked about ice chips and he was ok with it.:) I felt pretty good. Got home and in bed and about 8 or so began chilling and running a fever. I called my wonderful In Home Care Nurse and she helped me out by calling the Dr. to get suggestions on what to do. I was talking out of my head and Shane said that I gave him a pretty good scare. Thank the Lord He is a prayer answering God and I was not up all night fighting a temp. It broke and I was able to go to sleep for a good part of the night. Besides a bit of a sore throat I did good over the weekend. The doctor from Moline even called to check on me the next day!
I had a GREAT Mother's Day thanks to my 3 beautiful miracles. They know how to put a smile on my face. With the song they sang, the many cards they made, the hugs and kisses and gifts they gave. Kelsey spent money of her own to buy me extra gifts, some stuff to pamper me and a skirt and slippers. She has such a giving heart and is growing up way too quickly. I couldn't have asked for any better kids. I love them all and all three of their personalities (all so different).
On Friday, I will be having the surgery to have my pacemaker moved up and off of my hip bone. That will feel much better once it is off that hip. Both Chicago Dr's felt it was best for now to keep the pacemaker in rather than remove it. Back in February, when they switched the tubes out, I had the pacemaker turned off and during that time was extremely nauseated. I was on the couch or in bed most of the time. At least for now it is at least helping with that and I am able to function. With this being a laproscopic surgery, they will not be opening me up so the full thickness biopsy will not be able to be done till another time. Bummer for me, because that means going back under again, hospital stay,etc....
To God be the glory for all HE has done and is going to do! He is so good to me! I am so thankful for HIS blessings. So glad HE is a prayer answering God!:)
Monday, May 7, 2012
Thankful for HIS protection
I went to Chicago last Wednesday to have my pacemaker checked out since it is sitting on my iliac crest (hip bone). Yes, it does need to be moved up. I am waiting for University of Chicago to call me back in regards to whether or not we are going to keep it in or have it removed. They also want to talk with the surgeon about doing a full thickness biopsy while they have me opened up to save me another surgery.
I ended up in the ER on Thursday night with severe burning and pain inside me where my j-tube is. I thought at first on Thursday it was just from the big trip to Chicago and that I had worn myself out. As the day went on with me resting it just kept getting worse though. The ER Dr said it was cellulitis after an exam and CT scan. I was put on Rocephin while in there through the IV and given some pain meds. I ended up breaking out in hives from the Rocephin so they gave me a dose of benadryl through my line. With that and the pain meds in my system I felt a bit loopy. I was discharged home and able to get some rest till the pain meds wore off then I was in severe pain again. The following day, In Home Care was able to save me an admission by getting an order to have pain meds put through my hickman line. I didn't read the vial before hand and just assumed it was drawn up and ready to use. At 6 pm I gave myself the first dose and I used the whole vial. Never knew till later the next day according to In Home Care that one vial is for 4 doses worth and I had taken the whole thing at one time. So thankful that God is watching out for us even when we don't see it. I may not would have been here considering the dose and my weight. Thank you Lord for your unseen hand and for watching over me. I did end up going to the ER again later that night due to my j-tube coming out. The balloon is deflated and was out. The ER Dr ended up pushing it in deeper and taping it down and scheduled me to see the surgeon on Monday to have it checked out along with the cellulitis. I am on an antibiotic so between that the pain meds and prayers I am doing better. Still hurting but manageable compared to Thursday and Friday. We'll see what Monday holds. Not sure if he will put a new tube in or what the plan will be.
So glad i am in the Master's Hands and He holds my future and knows the plans for me. I want to make sure I am in HIS will and be the vessel He has called me to be.
I ended up in the ER on Thursday night with severe burning and pain inside me where my j-tube is. I thought at first on Thursday it was just from the big trip to Chicago and that I had worn myself out. As the day went on with me resting it just kept getting worse though. The ER Dr said it was cellulitis after an exam and CT scan. I was put on Rocephin while in there through the IV and given some pain meds. I ended up breaking out in hives from the Rocephin so they gave me a dose of benadryl through my line. With that and the pain meds in my system I felt a bit loopy. I was discharged home and able to get some rest till the pain meds wore off then I was in severe pain again. The following day, In Home Care was able to save me an admission by getting an order to have pain meds put through my hickman line. I didn't read the vial before hand and just assumed it was drawn up and ready to use. At 6 pm I gave myself the first dose and I used the whole vial. Never knew till later the next day according to In Home Care that one vial is for 4 doses worth and I had taken the whole thing at one time. So thankful that God is watching out for us even when we don't see it. I may not would have been here considering the dose and my weight. Thank you Lord for your unseen hand and for watching over me. I did end up going to the ER again later that night due to my j-tube coming out. The balloon is deflated and was out. The ER Dr ended up pushing it in deeper and taping it down and scheduled me to see the surgeon on Monday to have it checked out along with the cellulitis. I am on an antibiotic so between that the pain meds and prayers I am doing better. Still hurting but manageable compared to Thursday and Friday. We'll see what Monday holds. Not sure if he will put a new tube in or what the plan will be.
So glad i am in the Master's Hands and He holds my future and knows the plans for me. I want to make sure I am in HIS will and be the vessel He has called me to be.
Monday, April 30, 2012
Quick Update
I'm sure some of you are wondering what is going on and why I have not posted. Sorry, but I have been busy and the times I was going to post I was not feeling up to it.
I ran a temp again the week after being home from the hospital and had cultures done on the line again. All came back clear...Praise the Lord!
I went to the Ortho doctor two weeks ago in regards to the hip replacement and we are just going to keep on eye on the hips with X-Rays every 3 months. Nothing substantial found to warrant that big of a surgery Praise the Lord!!
The Neuro doctor discharged me. He said I have mild peripheral neuropathy and also autonomic neuropathy. For the autonomic, I could have more testing but even if I did, it wouldn't matter regarding treatment. I have a low blood pressure and dizziness.
Today we went to Rockford for the Rheumotoligist follow up and she did a cortisone injection in each hip. Yes, I am sore and hurting, but this too shall pass.
I go Wednesday to Chicago to see the surgeon who placed my pacemaker to have it checked. It is now sitting on part of my hip bone. They are concerned of it having dropped since the leads can pull out of the stomach and get tangled in the intestine or be "shocking" another organ. We are at a point, I believe, of needing to make the decision of it being placed back up or having it removed. He will need to be in contact with the Dr's from University of Chicago so we are all on the same page in agreement of the choice made. If I have it removed, then I have worse nausea than I already fight is the only thing.In the mean time, I will continue to trust God for my miracle.
So thankful for the strength He gives me day by day. So thankful for Him being by my side and being so faithful. So greatful that He cares and understands and will never leave me through all this, but continue to guide my steps. He keeps pouring His blessings upon me. I can't imagine going through all this without God on my side and my wonderful loving husband.
I ran a temp again the week after being home from the hospital and had cultures done on the line again. All came back clear...Praise the Lord!
I went to the Ortho doctor two weeks ago in regards to the hip replacement and we are just going to keep on eye on the hips with X-Rays every 3 months. Nothing substantial found to warrant that big of a surgery Praise the Lord!!
The Neuro doctor discharged me. He said I have mild peripheral neuropathy and also autonomic neuropathy. For the autonomic, I could have more testing but even if I did, it wouldn't matter regarding treatment. I have a low blood pressure and dizziness.
Today we went to Rockford for the Rheumotoligist follow up and she did a cortisone injection in each hip. Yes, I am sore and hurting, but this too shall pass.
I go Wednesday to Chicago to see the surgeon who placed my pacemaker to have it checked. It is now sitting on part of my hip bone. They are concerned of it having dropped since the leads can pull out of the stomach and get tangled in the intestine or be "shocking" another organ. We are at a point, I believe, of needing to make the decision of it being placed back up or having it removed. He will need to be in contact with the Dr's from University of Chicago so we are all on the same page in agreement of the choice made. If I have it removed, then I have worse nausea than I already fight is the only thing.In the mean time, I will continue to trust God for my miracle.
So thankful for the strength He gives me day by day. So thankful for Him being by my side and being so faithful. So greatful that He cares and understands and will never leave me through all this, but continue to guide my steps. He keeps pouring His blessings upon me. I can't imagine going through all this without God on my side and my wonderful loving husband.
Sunday, April 8, 2012
Home Sweet Home
God is good...all the time! On Thursday night, I was admitted to the hospital for pain in my 'Hickman Line' port entry area and up into my clavicle and a low grade temp that I had since Monday afternoon. The doctors were hoping to rule out a port infection and with much prayers, thankfully it was ruled out. Not sure if it was phlebitis or not, but it sure hurt (and still hurts).
Anyhow, I was discharged on Saturday and home by 2:30 that afternoon. So glad to be home and resting in my own bed. No blood pressure checks or nurses coming in to bring me medicines, or any pokes for blood!:) I do miss someone answering my call light! I keep waiting for someone to come. Ha! Shane and the kids have been wonderful at helping and taking excellent care of me.
So thankful God gave me strength to make it to church tonight! It felt so good to be in the presence of God, especially on Easter. Glad I just don't go to Church on holidays because it would be a long time till Christmas! :) So grateful for His LOVE and Sacrifice HE made so that I could live.:)
At home in bed for the night and letting the kids do a camp out on our bedroom floor. Oh what fun. Hearing them all giggle, just can't help but smile. SO much to be thankful for!! I am Blessed!!!!!!
Anyhow, I was discharged on Saturday and home by 2:30 that afternoon. So glad to be home and resting in my own bed. No blood pressure checks or nurses coming in to bring me medicines, or any pokes for blood!:) I do miss someone answering my call light! I keep waiting for someone to come. Ha! Shane and the kids have been wonderful at helping and taking excellent care of me.
So thankful God gave me strength to make it to church tonight! It felt so good to be in the presence of God, especially on Easter. Glad I just don't go to Church on holidays because it would be a long time till Christmas! :) So grateful for His LOVE and Sacrifice HE made so that I could live.:)
At home in bed for the night and letting the kids do a camp out on our bedroom floor. Oh what fun. Hearing them all giggle, just can't help but smile. SO much to be thankful for!! I am Blessed!!!!!!
Tuesday, April 3, 2012
A Few More Things...
I feel like a whirlwind has come through, but so thankful God is my Comfort and Peace in the storm. I received a phone call from Chicago saying they received a letter from the Rheumatologist and that the report shows that my hips are not in good shape. I have had pain for the past few years and it has worsened the past 6 months. It is from the malnutrition. They are concerned that it will break just by walking and requested I see an Orthopedic doc ASAP. They had me cancel out the knee surgery and focus on the hips. They want me to have hip replacements to both hips. Both before they break and I fall or before they get worse. I have an appt on Mon.
Since Monday evening I have had a low grade temp and tenderness around my port site that has gotten worse since last week. My In Home Care Nurse suggested I see the surgeon regarding it to make sure I don't have an infection. Went today to see him and not sure if it's a low grade port infection. I'm on Bactrim right now and if things get worse then get in touch with him, otherwise call him Thurs. and give an update. So glad I wasn't admitted. I thought I'd better pack my bags just in case. I always have a suitcase ready to go just in case I ever get admitted I have everything all together.
My inlaws are here from Texas visiting us ( I mean the kids). :) It has been a fun time. It will be sad to see them go. Feels like they just arrived. Got a big day planned tomorrow.
Praying I get a good nite sleep. God has been so good to me and to my family. I am so blessed!! Don't want to fail to give Him THANKS for all He has done and is going to do!
Since Monday evening I have had a low grade temp and tenderness around my port site that has gotten worse since last week. My In Home Care Nurse suggested I see the surgeon regarding it to make sure I don't have an infection. Went today to see him and not sure if it's a low grade port infection. I'm on Bactrim right now and if things get worse then get in touch with him, otherwise call him Thurs. and give an update. So glad I wasn't admitted. I thought I'd better pack my bags just in case. I always have a suitcase ready to go just in case I ever get admitted I have everything all together.
My inlaws are here from Texas visiting us ( I mean the kids). :) It has been a fun time. It will be sad to see them go. Feels like they just arrived. Got a big day planned tomorrow.
Praying I get a good nite sleep. God has been so good to me and to my family. I am so blessed!! Don't want to fail to give Him THANKS for all He has done and is going to do!
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