I published my last post even tho it wasn't up to date, just to fill in the first half of the year. So much has happened since then. I'll try to do my best to get you filled in on things since then.
I went to Cleveland at the end of August. We had lots to discuss with my stomach and intestines getting worse as far as the motility. My Dr. felt it was time for me to see an intestinal transplant specialist. He spoke highly of the Dr. he would be referring me to. We discussed the options that I have. My Dr. said he has 2 patients with simular stories to mine and told me how good they are doing since they have had surgery. I asked if he would give my name and number to them so that I could ask a few questions. He shared my info with one of the patients and within an hour after leaving his office I had a phone call from her. She was very sweet and answered all the questions I had for her.
My Dr. feels like this is the next step - choice 1 - to have some of the intestines removed, and choice 2 - to have a multi-visceral transplant. He put in the referral for an appointment with the specialist. With many phone calls and lots and lots of faxing of my records I was able to get an appointment set up. It took a bit to get it all because they set me up for testing and the appointment both while I was out there. I had an appt on Oct 13 to see the specialist and had some difficult testing set up to be done while there. I had been praying that some of it would be cancelled due to the prep for some of it. Not quite sure how I was expected to drink a bottle of mag citrate and a bottle of barium...hummm. Monday started with having some blood testing done. That "some" ended up as 30 vials of blood taken. I am very thankful I have a central line that they were able to use. After that I had to go to another building and have a CT of the abdomen and since there was some down time in between, the kids and Shane ate some lunch. We took the kids with so that we could spend some time together as a family and do some things while there. They had fun while eating their lunch watching the construction in the parking lot. I got to meet my nursing coordinator, Shatina, at the appointment. We talked on the phone many times getting the appt set up and it was nice to be able to meet her in person. She is super sweet! We went over my medical history, then I met with one of the Surgeons in the office to review it. He was really nice and informative on everything. Then I got to meet Dr Kareem. He has a big heart. He went over the the 2 choices and we both felt it would be best to go with option 1 first. He is not for certain how much of the intestine he will remove. He knows the large intestine will go but not sure on how much of the small. He gave me a hug and reassured me that he will do his best on getting me back on track. Both he and my GI Dr. feel like I am strong enough for the surgery and that having the surgery will help with the pain help me feel some better. He also wanted to see the kids, so Shane went and got them from the waiting room and brought them back. He gave the girls a kiss on the forehead and told them he was going to do his best to get their Mama feeling better. He also cancelled out all the tests except for one- an esphogeal manometry test. Before leaving I signed my surgical consent for Nov 4. That ended the big day for Mon. On Tues. I met with the nutritional support team for my TPN and then had an appt with my GI Dr. We basically discussed Monday's appt and what Dr Kareem had had to say and that was my day. On Wed I had the wonderful tube down my nose for the manometry test. Glad that was no more than 20 minutes or so of testing. We started for home Thursday morning but not without stopping for the birthday girl, Kailey. She turned the big 11. We surprised her with tickets to the Blue Gate Theater to see the play- Josiah for President. It was a really good play and we all enjoyed it.
We are getting things packed and ready to go for Cleveland. I will be in the hospital for a week and then in a hotel for 2-3 weeks before I can come home. We decided the kids would be better if they stayed home. They will be able to do their schooling still and be at home and in their own beds. I'm trying not to pack the house as I'm getting ready. Just don't want to forget any of my medical supplies and things I would need while I'm in the hotel.
The kids are doing well. This is Matthew's first year of homeschoooling and he is doing great! He is working hard!:) The girls are doing good in their studies also. Matthew and Kailey have been working extra to get ahead of the planned assignments so they won't be behind when I come home. They all have been a big help to me in getting things together. What a blessing that these 3 kids are to me in so many ways!! I love them lots and will miss them bunches while gone.
I have really enjoyed the fall this year. The weather has been great and not too many days of cold weather. I have enjoyed looking at all the beautiful colors in the trees. Some are so breath taking at how vibrant they are. God is the Greatest Artist no doubt! We have gone to a couple orchards this year and the kids have enjoyed some apple cider donuts. Kelsey had the experience of a goat chewing the pocket on the back of her skirt.;)
The Lord has really blessed Shane's business. He has been able to expand and get more of the building. He did the Homestead parade again this year. Dad and Mom Pennington have moved back home from Texas to help Shane with the business. What a blessing for Shane to be able to leave and be with me and not have to close the shop down each time. God is so good! He is our Provider.
I give God all the glory and praise for the great things He is doing! He is everything we need and more than enough! I can't thank Him enough for everything He has done and every time He has brought me through. He is my peace, joy, comforter, and healer. I'm so thankful my life is in His hands and that He is my great Physican. If it wasn't for Him I would not be here today. He is doing great and wonderful things. I'm so glad that He walks with me each step I take.:)
I want to thank you for all your love, support, and prayers! I feel like this post is all over the place-hope it makes a little bit of sense. You guys have waited patiently as you have texted and emailed wanting to know what we had found out at Cleveland. I'll try to a better job with my updates. Shane will try to keep you posted until I'm up to it.
Love Ya
Tuesday, October 28, 2014
Monday, October 27, 2014
It is way past time for a much needed update from me :)
I am sorry that I have not done an update since January!! The time has flown by way too fast for me. Thank you to those who have sent texts and emails checking on me in the meantime as you've patiently waited for me to do an update. :) I'll see if I can highlight a bit of what's been going on.
I've been to Cleveland Clinic in Ohio two times and have made some phone calls there in between:) They have made some changes in my medications. They continue to change my TPN according to what my bloodwork shows and to help increase my weight. I will continue to see my Specialist there every 3 months. I was there in May trying some new meds.
I had to have my Hickman line changed out because one of the lines broke as an outpatient. :( I still get stuck to have bloodwork done, by my choice, because I don't want to have any line infections. I know there are times they have to draw off it. As I was getting ready to be taken back they premedicated me with Benadryl and I ended up having hives and itching immediately. They rushed me back and I was given something to counteract it. Other than that, all went well. I am thankful for the line and that I'm able to do the TPN, as I wait for my miracle to come :)
My foot was still hurting so I told my foot Doctor at my appointment, He did an XRAY and it showed that it was healing and I was told to come back in 6 weeks to recheck it. When I went back, it wasn't hurting any worse but still hurt and the XRAY showed it was fractured again. Not sure if it refractured or was never totally healed. Anyway. the 2 choices were.... a cast again for 6 weeks or surgery to remove the bone. I opted to do the cast. The girls had seen a lady with a pink cast on and wanted me to have that so I gave it a try :) They lit up with smiles when Shane brought me home. When I fractured it back in September the doctor explained that with the bone being fractured it may not get adequate blood supply and the bone could die. Since this was another 6 weeks in the cast I was a candidate for a bone stimulator. A rep from the company came and got me all hooked up and showed me how to use it. I had to call Medtronic to make sure it was okay to use with my gastric pacemaker. With it being so far away we were given the go to use it. Having to sleep with a cast and stimulator on at the same time took some getiing used to but we did it.:) The XRAY showed that the bone had died even with doing the stimulator and cast. What a disappointment but at the same time I was ready to get back on both feet, so in May I had surgery to have the bone removed. The plan was to stay overnite and be discharged the following morning. I was alert when I went in and as they were prepping me, the anthestelologist gave me ketamine so I was in "twilight". I said a few times to the anesthesiologist I'm awake and that my calf hurt. It was only because the tourniquet was there. I was fully awake by the time they were casting it and wheeling me to my room. Ketamine is one terrible med!! I felt like I was buzzing from dream to dream in a very fast pace! Any type of light made me feel worse, so I laid in the room for a few hours with lights off as much as possible. I was super nauseated and my mouth was very numb and tingling from an allergic reaction. I guess when they gave it to me I reacted with a rash up my arm and with my mouth numb and a thick tongue. I am going to have to make an appointment with an allergist due to all my allergies I've been having to medications. I carry an epipen in my purse and have one at the side of my bed - orders from the Dr in Cleveland. I am recovering from the surgery pretty well and starting to put weight on my foot again:) I haven't walked on it since February but step by step and with physical therapy 3 times a week I'll be back in working order here soon. The foot doctor and all the Resident Doctors have been wonderful thru all of this.
Cleveland asked me to see a Neurologist for a few things so I set an appointment up in March to see one. He did some tests due to some of the meds that I am on. It showed negative for seizures and Cleveland wanted it ruled out from the meds so I had to be admitted to ICU for a 3 day stay with my Sweet Husband by my side to monitor for any of the signs. I had a hard time being admitted there and not having a line infection, I mean this is where super sick people go- you don't have a private bathroom, privacy, and quietness. I tried my best to talk them into another area but the only 2 places they do the testing is Pediatrics and ICU and since the peds was closed I didn't have any choice. I do have to say they went above and beyond to make it quiet and give me some privacy. It was very hard being hooked to over 20 some electrodes to my head for 3 days on top of all my other health issues. The neurologist is very nice and I am thankful to report that I do NOT have any seizure activity at all. He feels like it is all metabolic issues and that there were no signs of anything bad signaling to the brain! Thank you LORD!!!!! That was a BIG answer to Prayer for me!
I have had a few stays in the hospital the past several weeks. God has been very good to me and I am so blessed!! I am very thankful for answered prayer and things that could have been some major issues, He turned around for me.:) The last stay was last week on my birthday. I woke up with a fever and nothing I did brought it down so after a bit I decided it was best to go to the ER. I was told I would be admitted due to the fever and the line tested for staph and sepsis, but before I was moved to my room my fever broke. I felt just as I would with a line infection but God just changed it all for the better and it was a viral infection instead! I was able to go home the next day mid morning!
I'm still going to the hematologist to help the anemia. My iron is up and down so we are still trying to keep it under control. If you are able too - donate blood! I know that a lot of hospitals do blood drives. :) I know it's not fun to do-but your pint of blood can help 3 people:)
I can't thank you enough for all your prayers, cards,texts, calls, and emails. What a blessing that is to me!! So thankful that we can take our needs to God in prayer and HE does listen and He does answer prayer. No it's not always in our timing or the way we expect it to happen. I am so blessed to have family, friends and loved ones who care and support us. So thankful to God for all HE has done for us thru all this!! I am one very blessed person and so grateful for all He has done and blessed me with! It doesn't take much to look back over the past 5 years and see what God has done for us and how far He has brought me thru all of this! I am still here today and that in itself is a miracle. :) I know things could be better but it doesn't take much for me to see what it could be also.
I am blessed by my awesome husband and my 3 wonderful kiddos who always bring a smile to my life. Mat
thew is finished with 3rd grade and ready for summer break! Kailey is just about done in the next week or two and Kelsey has a while yet due to her laptop breaking down and having to redo so much.
I've been to Cleveland Clinic in Ohio two times and have made some phone calls there in between:) They have made some changes in my medications. They continue to change my TPN according to what my bloodwork shows and to help increase my weight. I will continue to see my Specialist there every 3 months. I was there in May trying some new meds.
I had to have my Hickman line changed out because one of the lines broke as an outpatient. :( I still get stuck to have bloodwork done, by my choice, because I don't want to have any line infections. I know there are times they have to draw off it. As I was getting ready to be taken back they premedicated me with Benadryl and I ended up having hives and itching immediately. They rushed me back and I was given something to counteract it. Other than that, all went well. I am thankful for the line and that I'm able to do the TPN, as I wait for my miracle to come :)
My foot was still hurting so I told my foot Doctor at my appointment, He did an XRAY and it showed that it was healing and I was told to come back in 6 weeks to recheck it. When I went back, it wasn't hurting any worse but still hurt and the XRAY showed it was fractured again. Not sure if it refractured or was never totally healed. Anyway. the 2 choices were.... a cast again for 6 weeks or surgery to remove the bone. I opted to do the cast. The girls had seen a lady with a pink cast on and wanted me to have that so I gave it a try :) They lit up with smiles when Shane brought me home. When I fractured it back in September the doctor explained that with the bone being fractured it may not get adequate blood supply and the bone could die. Since this was another 6 weeks in the cast I was a candidate for a bone stimulator. A rep from the company came and got me all hooked up and showed me how to use it. I had to call Medtronic to make sure it was okay to use with my gastric pacemaker. With it being so far away we were given the go to use it. Having to sleep with a cast and stimulator on at the same time took some getiing used to but we did it.:) The XRAY showed that the bone had died even with doing the stimulator and cast. What a disappointment but at the same time I was ready to get back on both feet, so in May I had surgery to have the bone removed. The plan was to stay overnite and be discharged the following morning. I was alert when I went in and as they were prepping me, the anthestelologist gave me ketamine so I was in "twilight". I said a few times to the anesthesiologist I'm awake and that my calf hurt. It was only because the tourniquet was there. I was fully awake by the time they were casting it and wheeling me to my room. Ketamine is one terrible med!! I felt like I was buzzing from dream to dream in a very fast pace! Any type of light made me feel worse, so I laid in the room for a few hours with lights off as much as possible. I was super nauseated and my mouth was very numb and tingling from an allergic reaction. I guess when they gave it to me I reacted with a rash up my arm and with my mouth numb and a thick tongue. I am going to have to make an appointment with an allergist due to all my allergies I've been having to medications. I carry an epipen in my purse and have one at the side of my bed - orders from the Dr in Cleveland. I am recovering from the surgery pretty well and starting to put weight on my foot again:) I haven't walked on it since February but step by step and with physical therapy 3 times a week I'll be back in working order here soon. The foot doctor and all the Resident Doctors have been wonderful thru all of this.
Cleveland asked me to see a Neurologist for a few things so I set an appointment up in March to see one. He did some tests due to some of the meds that I am on. It showed negative for seizures and Cleveland wanted it ruled out from the meds so I had to be admitted to ICU for a 3 day stay with my Sweet Husband by my side to monitor for any of the signs. I had a hard time being admitted there and not having a line infection, I mean this is where super sick people go- you don't have a private bathroom, privacy, and quietness. I tried my best to talk them into another area but the only 2 places they do the testing is Pediatrics and ICU and since the peds was closed I didn't have any choice. I do have to say they went above and beyond to make it quiet and give me some privacy. It was very hard being hooked to over 20 some electrodes to my head for 3 days on top of all my other health issues. The neurologist is very nice and I am thankful to report that I do NOT have any seizure activity at all. He feels like it is all metabolic issues and that there were no signs of anything bad signaling to the brain! Thank you LORD!!!!! That was a BIG answer to Prayer for me!
I have had a few stays in the hospital the past several weeks. God has been very good to me and I am so blessed!! I am very thankful for answered prayer and things that could have been some major issues, He turned around for me.:) The last stay was last week on my birthday. I woke up with a fever and nothing I did brought it down so after a bit I decided it was best to go to the ER. I was told I would be admitted due to the fever and the line tested for staph and sepsis, but before I was moved to my room my fever broke. I felt just as I would with a line infection but God just changed it all for the better and it was a viral infection instead! I was able to go home the next day mid morning!
I'm still going to the hematologist to help the anemia. My iron is up and down so we are still trying to keep it under control. If you are able too - donate blood! I know that a lot of hospitals do blood drives. :) I know it's not fun to do-but your pint of blood can help 3 people:)
I can't thank you enough for all your prayers, cards,texts, calls, and emails. What a blessing that is to me!! So thankful that we can take our needs to God in prayer and HE does listen and He does answer prayer. No it's not always in our timing or the way we expect it to happen. I am so blessed to have family, friends and loved ones who care and support us. So thankful to God for all HE has done for us thru all this!! I am one very blessed person and so grateful for all He has done and blessed me with! It doesn't take much to look back over the past 5 years and see what God has done for us and how far He has brought me thru all of this! I am still here today and that in itself is a miracle. :) I know things could be better but it doesn't take much for me to see what it could be also.
I am blessed by my awesome husband and my 3 wonderful kiddos who always bring a smile to my life. Mat
thew is finished with 3rd grade and ready for summer break! Kailey is just about done in the next week or two and Kelsey has a while yet due to her laptop breaking down and having to redo so much.
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