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.