Sunday, October 23, 2011

Health update - sorry for the wait :(

Hey I guess you can say that it's been really hard for me to even provide for you a health update! Ugh :/ Things have been so stressful and of course, painful.

Last week I had to be admitted to the hospital for persistent vomiting and retching that wouldn't stop. They gave me so much nausea medication but none of it worked. I had gone to the ER next to my house first and they said nothing was wrong (bloodwork looked normal) but then went to a totally different hospital called Baptist in Miami (really far from where I live) and they almost placed an NG tube to suction my stomach cause I was vomiting so much bile it was ridiculous, my G tube wasn't do anything (now, before you think why haven't you connected it to a decompression bag? well, unfortunately, we don't have those at the hospitals here in FL, they are extremely expensive and I check everywhere for good deals to buy them or try when I get a chance to get people to give me a few of them for free or something and it just doesnt work out so we don't have the ability to get those decompression Farrell bags...), so yeah there's no way to "decompress" my stomach anyway. Anyways, we found out I had pancreatitis, not sure why I got it, but I had it and they connected my G-tube to suction and the vomiting and retching stopped almost completely. It made me get better. A mixture of pancreatitis and my very bad motility issues was just making me really really ill. We saw the hematologist who looked at all my bloodwork (my platelets mostly) and diagnosed me with chronic ITP. ITP = idiopathic thrombocytopenic purpura, which means I don't have enough platelets cause my immune system destroys them. Treatment for it remains pending, if it gets worse, we'll try transfusions, etc. But get this - the week before this pancreatitis decided to come I had to get two surgeries to replace/fix my GJ tube cause it had come out of place. My body doesn't recover well from these replacements and "fixations" of my GJ. So, we left Joe dimaggio after 2 attemps to get my GJ back where it was supposed to be, arrived a good two days later at Baptist with bad acute pancreatitis AND with all the vomiting and retching of course my tube came out of place...AGAIN.

At Baptist they told us we had to get that tube back and I dreaded that whole week of pancreatitis and when I left I felt great, way better than I had felt before (obviously). But they I had to go two days later back to Baptist and they told us that they're pretty sure they would be able to do the tube change with the same tract and stoma but they were gonna change it to a bigger tube not the button and I would be a-okay. However, when I woke up...they told me and my family that it was impossible to work with that tube so they had to make a brand new incision, with a bigger stoma and leave the other hole in my belly to close. So to this second I have three belly buttons.

When you look at the complexity of my situation you begin to wince. Or at least I do.... I've had three surgeries in about two weeks, one of which involved a real incision....I'm in so much pain I can barely explain body feels like it's been hit by a truck...I was sent home hoping that oral pain medications are going to help me get through this but so far it's not working so great...I haven't gone to the bathroom in about a month and in the hospital they tried getting me to go and it didn't work...we have no idea what step we are gonna take next. I have a fever and have had one since getting out of surgery but they say it's normal cause my body just went through surgery. Honestly, I don't know what else to say in this update....but I'm supposed to go to mito camp in a couple days and I'm in this tremendous amount of pain and I don't know what to do about any of it....I'm praying God PLEASE give me a break soon cause I just need one SO much.

Please continue to pray that I can catch a break, that this pain from the new tube goes away soon and I can live life again...and tomorrow is the 5th month since one of my close friends Roxanne went home to's really really hard on me and everyone who knew her...pray for us and her family for them to be comforted she is no longer in pain and no longer suffering....I will see her again one day, I can't wait...

Nothing else I need to say, the words on my tongue have dwindled away...I apologize.......



  1. Caroline, you are such a strong, amazing girl. I'm praying for you. Hang in there!

  2. If you are only decompressing your stomach (G tube) and not feeding through it, you don't need an expensive farrell bag... Foley catheter bags work just fine (if not better bc the tubing is bigger). You can use the big bags (2,000 mL like they attach when used with a foley or the leg bags which hold 300 or 500 mL). If you want more details or photo just email me Hope this helps!