Keeping tube.................

Well I thought it's about time that I update my blog! The last update I wrote was five days after surgery. Today is day 12. I thought I was healing pretty well and feeling better the past few days. My tongue is still really swollen, so it's still hard for me to talk, and I drool and spit all over when I do try to to talk. lol. My pain kinda leveled off. It got bad around day seven or eight, and I called and they said that was normal, that some of the white coating falls off and you have open sores again, which made sense. Now I am back to where I was before. Still using pain medication every 3 hours. It seems that when I notice myself not swallowing and having a mouth full of spit, I'm overdue on my pain medicine and I just subconsciously stopped swallowing cause it hurts! lol.

Yesterday was an interesting day to say the least. Our power went out the night before around 9pm. We woke up and our trampoline was GONE. Just gone! No sign of it! That is pretty scary if you ask me. I felt sad that our trampoline was gone, but also felt very thankful that our house was still standing! That we were all safe! It must have happened when we were all in the basement cause we didn't hear anything. So yesterday am, my dad came over to help with the kids and we were all in the kitchen and Gracie had our cup drawer pulled out, she decided to sit on it, which was obviously not a good idea. The drawer fell to the ground, with her in. I grabbed her hand and pulled her up, then my dad and I both leaned over and tried to pick up the drawer. All of a sudden I felt a bunch of fluid in my mouth, honestly, I thought, did I just throw up in my mouth? So I ran over to my suction device and turned it on, and started sucking and it was bright red blood. I about freaked out. It was just pouring out of my mouth. This was one of those moments of shock! I am bleeding from my mouth what do I do?? Quite quickly we decided we need to hurry up and go to the hospital and everyone got into panic mode, especially me, Ms. nervous Nellie. Jake helped get the kids in the van and the dogs in the house, my dad grabbed what we needed and we headed off. My suction machine didn't take long to get clogged up with blood, then I started really freaking out. Now what? So I handed Jake my cell phone and he called 911. He talked to them, as my dad drove the van towards the hospital. They kept asking where we were and when they figured we were passing a firehouse, they said, stop there. So we did. They put me in the ambulance, It amazes me how calm these guys are when someone comes walking up to them with blood gushing out of their mouth. They are just so nonchalant! Oh, what is going on ma am?? UMM!! I'm bleeding that is what is going on! They are quite slow to get things moving! I had to get myself in the ambulance, and tell them to take me to the hospital! My dad beat us there. How sad is that? So I spent the day in the ER. The kids were there with me for awhile, then Kevin came home form work and got the kids and my dad stayed with me, all day, until finally at like 6pm we got a regular room on the 4th floor. My dad sat there with me the entire day, except for leaving twice to get me clothes and my food for my feeding tube. Kevin and the kids came up around 7pm, they were there about 10 min and Gracie was crying she wants to go home. I guess she really didn't care about spending time with her mom. lol. The original plan was that my dad and I were to leave for mayo clinic this morning at 6am for my follow up appointment. But we didn't know how that was going to happen when the hospital wanted to watch me over night to make sure I didn't bleed anymore. We finally did get it worked out that they would discharge me at 5:30am so we could still go ahead and get to mayo today. My dad picked me up at the hospital at 5:20 this morning. He said he didn't sleep at all last night and neither did I , I just couldn't get to sleep, just worrying I was going to start bleeding again.

So we ran home so I could pack up my stuff and we left for mayo. We got there around 11:30am, so we were even early for my appointments. My first apt was my swallow study, which I didn't do to well on. My first few sips of water I just choked and coughed. After a few more I did just OK. Then they did it with the barium, and they watch me swallow kind of on an xray and see what happens. I didn't do great. It took me lots of swallows just to get down a tiny bit of barium, then she tried applesauce mixed with barium and it took me 6 swallows just to get down one little bite. So she said I need to keep my feeding tube for another 2 weeks. I just cried. I know, it could be so much worse, its only a few weeks, I just really am tired of this feeding tube and really miss eating real food! lol. But I will survive it.

So after that apt I saw Dr. Moore, he wasn't too concerned about my bleeding the day before. He said that happens to 5% of people around the 7th to 10th day, scabs can fall off and cause bleeding, he said that's probably what happened. He did scope the camera up my nose and down to my tongue and throat and saw one little red spot, he said that might have been where the bleeding had came from, but he didn't see any "active" bleeding so he didn't seem too concerned. I guess I need to be more careful at home with my lifting and bending over and stuff like that. I'm sure I will be now, since that happened I am paranoid about it happening again!

I also am afraid to be alone now. I just thank Jesus that my dad was there when that happened. If he hadn't been, we would have called 911 from home and Jake would have had to stay home with his younger siblings. I know he would have been scared. So I think now I'll make sure there is always someone at our house with me and the kids, at least for a few weeks!

So now my dad and I are at a hotel. We are both so tired. I hope I can sleep in this bed. At home I am used to sleeping on the couch so my head could be upright, and at the hospital I hardly slept, so tonight should be interesting. We will be on our way back home in the morning.

The plan now is to go back to mayo once again in two weeks. They really don't care that we have to drive 5 hours, they think that we need to come there for follow up. What a pain. I hope the next trip will be the last for at least 6 months!

That is the latest. Thank you for continuing to pray for healing, and please pray that I will get used to swallowing water and food soon so I can get this tube out in two weeks.

love,

Amy