Dearest Friends and Family,
I wanted to let you know basically what is going on and what will be happening with me for the next few days and weeks.
I am going to be admitted to John’s Hopkins on Monday 3/13. They are taking out my feeding tube (J Tube), because it was infected. Apparently, once you get an infection inside of the tube, It doesn’t clear up and you have to get it out and let it heal before you put another tube in.
They are going to take out the old feeding tube and put in a central line which is like a temporary port going through your chest. I will be able to get fed by an IV to my chest until April 3, which is the date for my surgery. Home health will have to come every day to administer the food and make sure things are sterile and that I’m okay. I will pretty much be homebound from now until April 3rd.
Of course, Things may change (as they always seem to with me!) but for now, I am scheduled to have the pacemaker surgery on April 3rd. They are planning to put in a pacemaker to see if that will help my stomach move and improve the nausea. If it does, then they’ll count it a success, and I may try eating something small. But they are still afraid that my pancreas is going to flare because I have chronic pancreatitis. They are not sure if, when I eat again, it will resurface. If it does, or if the pacemaker is NOT successful, they will do a surgery to take out most of my stomach and pancreas. They want to try the least invasive first, and then move on to more riskier surgeries if need be. They are not going to let me go home; however, until my issues are resolved.
I know and have a peace that I am in the right place. It’s just going to be hard for the next 8 weeks to 2 months or more. Please just pray for me that God will work His will and way and that things will work how they are supposed to according to His plan!
Kevin has been here in town visiting and we were able to go to the National Harbor in Maryland, nearby Washington, D.C. and Alexandria, Va. It was beautiful and breathtaking, and a wonderful time together. I loved every minute of my time with my husband. These next few days in the hospital will be hard, but I will have God holding my hand and my husband’s hand there too. Not to mention, the prayers from my family and friends.
I also feel so badly for my parents and family. They are all pitching in to take care of me…my mom and dad as well as Cherie and Betsy. Darla is in the hospital herself very pregnant with twins, so you can imagine how all of this news is affecting mom and dad. I know they are worried for both of their daughters, and they have their own struggles. It’s hard for me to not feel guilty for putting so much responsibility on them. I know they love me and are so thankful I am here, but it still is difficult, nevertheless!
Thank you for praying for me! My prayer is that I will live with all joy because I know that ALL things work together for Good to those who love God! And I do love God!
And I love you all.
Keep praying and don’t stop.
GOD IS SO GOOD!!!
Saturday, March 10, 2012
Saturday, March 3, 2012
Short Update 3/4
Well everyone!
I thought that I would write a quick blog. I can’t sleep tonight, so I have decided to write a little blog to keep you updated on my progress while I’m here in Maryland. This is very abbreviated. My condition, as most of you know, is very complicated, and to those who want to know more, I am always happy to tell you. This is just the basics of what I’ve learned thus far, and what I am getting ready to face at the doctors during the next week or two!!!
I’m actually getting very excited. I only have 4 more days until Kevin comes to Maryland for a week’s visit with me! I am really thrilled to see my sweetheart after a month of missing him.
As everyone knows, I haven’t been eating at all. I can drink some liquids but that’s pretty much it. I will sip a milk shake now and then, but I pretty much stick to my tube feedings. That’s the only way that I can guarantee control of the nausea, vomiting, pain and bouts of pancreatitis.
After much consideration, Kevin and I decided that I would stay here in Maryland and seek treatment for my complicated conditions at John’s Hopkins Hospital, thanks to my parents who are graciously housing me while I’m here getting help. I want to get “fixed” once and for all, so I can try to have a more normal life. I want to get to the point that instead of seeing my doctors at Hopkins every month or two, I can come here to see them every year or two! I want to get back to my life in Texas. I have felt in limbo for some time.
We had some preliminary visits with the doctors in February and, the first procedure I had done on Feb. 17th was the Endoscopy where they looked down my throat and put Botox in my stomach, which would help my stomach muscles. The doctor didn’t know if it would help or not, but it was something they hadn’t tried. They said I’d see results in 1 to 5 weeks. I haven’t noticed anything yet, but we’re not counting it a loss yet!
Last week I actually had a little setback. I have an infection at my feeding tube site and the doctors admitted me to the hospital so that I could get IV antibiotics. The site is still bothersome and will be sore, but the infection is getting better and I’m still taking medicine. I was in the hospital for 4 days, and you can bet I was glad to get home, although I had great care and God is always so good to me. I want to be a light for Him wherever I go.
Anyway, I had an appointment with a specialist about a week or so ago, and he said that the next step is for me to have a Gastric Pacemaker put into my stomach. What it may do is make my stomach motile again. He told me that I have a 50/50 chance of this procedure working. If that doesn’t work, then they will remove 75% of my stomach and resection it off in the hopes that it may work somewhat again.
Hopefully the first procedure will work. If not, I may be here for an even longer stay because the second surgery is more invasive and complicated.
We don’t know what else the doctors are considering yet. Truthfully, They don’t have hopes that I’ll ever eat normally again, but at this point, I’m okay with having some bites of food!! I am clinging to that hope.
I go to the doctor’s office on Tuesday and I’m actually hoping to get a surgery date nailed down for the first pacemaker surgery also this week. Once I do know more specifics, I will share them with you all!
Thank you for your prayers for me AND for Kevin. He appreciates them from each and every one of you who have lifted his name in prayer to God. Thank you from the bottom of our hearts. God is listening, God is hearing, and surrounds me so many times with love and comfort I know is only from Him and I KNOW that feeling I feel is from the prayers being said by others on my behalf. Thank you so much for those prayers you all pray for me and Kevin!
Please pray for my husband to have a safe trip here and that this week will a productive one where the right decisions for my health will be made.
In a letter soon, I would like to share how God has used this illness in my life to really bring me closer to Him and to others. I will share that soon. I just wanted to update everyone really quickly tonight!
Thank you again for your love and friendship!
Love,
Ami
I thought that I would write a quick blog. I can’t sleep tonight, so I have decided to write a little blog to keep you updated on my progress while I’m here in Maryland. This is very abbreviated. My condition, as most of you know, is very complicated, and to those who want to know more, I am always happy to tell you. This is just the basics of what I’ve learned thus far, and what I am getting ready to face at the doctors during the next week or two!!!
I’m actually getting very excited. I only have 4 more days until Kevin comes to Maryland for a week’s visit with me! I am really thrilled to see my sweetheart after a month of missing him.
As everyone knows, I haven’t been eating at all. I can drink some liquids but that’s pretty much it. I will sip a milk shake now and then, but I pretty much stick to my tube feedings. That’s the only way that I can guarantee control of the nausea, vomiting, pain and bouts of pancreatitis.
After much consideration, Kevin and I decided that I would stay here in Maryland and seek treatment for my complicated conditions at John’s Hopkins Hospital, thanks to my parents who are graciously housing me while I’m here getting help. I want to get “fixed” once and for all, so I can try to have a more normal life. I want to get to the point that instead of seeing my doctors at Hopkins every month or two, I can come here to see them every year or two! I want to get back to my life in Texas. I have felt in limbo for some time.
We had some preliminary visits with the doctors in February and, the first procedure I had done on Feb. 17th was the Endoscopy where they looked down my throat and put Botox in my stomach, which would help my stomach muscles. The doctor didn’t know if it would help or not, but it was something they hadn’t tried. They said I’d see results in 1 to 5 weeks. I haven’t noticed anything yet, but we’re not counting it a loss yet!
Last week I actually had a little setback. I have an infection at my feeding tube site and the doctors admitted me to the hospital so that I could get IV antibiotics. The site is still bothersome and will be sore, but the infection is getting better and I’m still taking medicine. I was in the hospital for 4 days, and you can bet I was glad to get home, although I had great care and God is always so good to me. I want to be a light for Him wherever I go.
Anyway, I had an appointment with a specialist about a week or so ago, and he said that the next step is for me to have a Gastric Pacemaker put into my stomach. What it may do is make my stomach motile again. He told me that I have a 50/50 chance of this procedure working. If that doesn’t work, then they will remove 75% of my stomach and resection it off in the hopes that it may work somewhat again.
Hopefully the first procedure will work. If not, I may be here for an even longer stay because the second surgery is more invasive and complicated.
We don’t know what else the doctors are considering yet. Truthfully, They don’t have hopes that I’ll ever eat normally again, but at this point, I’m okay with having some bites of food!! I am clinging to that hope.
I go to the doctor’s office on Tuesday and I’m actually hoping to get a surgery date nailed down for the first pacemaker surgery also this week. Once I do know more specifics, I will share them with you all!
Thank you for your prayers for me AND for Kevin. He appreciates them from each and every one of you who have lifted his name in prayer to God. Thank you from the bottom of our hearts. God is listening, God is hearing, and surrounds me so many times with love and comfort I know is only from Him and I KNOW that feeling I feel is from the prayers being said by others on my behalf. Thank you so much for those prayers you all pray for me and Kevin!
Please pray for my husband to have a safe trip here and that this week will a productive one where the right decisions for my health will be made.
In a letter soon, I would like to share how God has used this illness in my life to really bring me closer to Him and to others. I will share that soon. I just wanted to update everyone really quickly tonight!
Thank you again for your love and friendship!
Love,
Ami
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