While I'm writing this I'm mentally going over my ER trip check list for my husband:
Extra underwear - check
Shaving supplies and toothbrush - check
Extra guaze, tape, alcohol wipes, saline/ heparin flushes, gloves, updated list of what is in David's TPN - Check
Wallet and cellphone - check
and the list goes on...
I figure I'll post our story before we leave either tonight or early morning, depends on how his fever's running...
In spring of 2006 David was diagnosed with FAP. David's dad had had some surgeries earlier in his life, the last one to remove part of his colon due to precancerous polyps, so David knew that he had to worry about polyps, but he didn't know that he had to worry now. In July, David surprised me by asking me to marry him. We had been living together for about 3 years and we knew we were going to get married, we just weren't in a big rush.
We went to see doctors and had a genetic test done on David to confirm the orgiinal diagnosis, then there were more prepartory endoscopies and what not before we were finally able to schedule a date for the surgery on 1/22/07. We talked and planned on how to tell David's son, who is autistic, and doesn't always accept change well (we know we have to get him tested, we're just dreading the results). We decided that David's parents would take care of his son since they lived close by, so as not to disrupt his schedule. We wrote out advanced directives and power of attorney's so we were prepared for the worst case scenarios, you know, just in case... I had started noticing a freckle that looked like it was growing on David's leg, I told him to go have it looked at, just in case. One week before David's surgery we find out that freckle is a melanoma. 1/22/07 David goes in for his surgery to remove his all of his large intestine, and his gallbladder and then have a temporary ostomy placed until everything healed and he could have it taken down. The doctor gave us a recovery time of about 6-8weeks total and then David should be fine. Once he is better we would have another doctor remove the melanoma and do a sentinal node to make sure it has spread. That was the plan. During the surgery the doctors discovered that David's small intestine was covered in polyps, more than they saw the first time. So they had to removed part of his small intestine and reattach it. So the surgery went from 6 hours to 9.
We've been married for a year now.. David has not been able to eat or drink for most of this time because of pancreatitis, abscesses, fistulas... David has had multiply infections and gets all of his nutrition through TPN. At one point the doctor's had to do emergency surgery on him where they discovered that the area of his small intestine that had been reattached had opened up and was deterioting. David was in a medically induced coma for over two weeks so that the doctors could go in every few days and wash him out. Since then he's been doing better, BUT he is constantly getting infections, or his electrolytes are critically off. Everytime we get to the point were we're ready to bring his son back home, he gets sick and we do the mad midnight dash up to the ER...
We're tired... has anyone else had such a bad streak of luck for this kind of surgery? Any ideas to pitch to the doctors, because they're just as frustrated as us. It's sad when pratically all the nurses know us, and the ER receptionist knows us... Man, I need to get some sleep, and I'm starting to ramble.
Hopefully, this won't be another long stay...

quote:

We're tired... has anyone else had such a bad streak of luck for this kind of surgery? Any ideas to pitch to the doctors, because they're just as frus

While I do not have FAP, I can relate to complications and frustrations. I have Ulcerative Colitis and had my large intestine completely removed last year ... with that came many long nights ... kidney failure/blood clots/fistula/abscess ... My TPN stint only lasted 3 months but I understand the mindset you are describing. When will you guys get a break? It seems like one thing leads to another and you can't see the end of the road.

Hang in there. I know it is not easy now and my thoughts and prayers are with you and your family through this rough time. It has been nearly a year for me since my 6 months of recovery and hospitalizations where I was also on the 'frequent flyer mile' ER wall and though it felt like forever then - lets hope it works out for you like it did me where its a relatively short time to pay for the rest of your lives together.

I am recently married too - congratulations! I hope David makes a full recovery and you two can truly start to enjoy your marriage together.

God bless.

It's late here and I can't think of anything to offer you. It sounds like your docs are on top of things. I know it seems like it is such a pile on and once the infections start happening, it is nearly impossible to get ahead of them. TPN is a life-saver, but it is not without its own set of risks. I presume that once the small bowel is healed enough, they will resume an oral diet, which should help, since TPN really does not provide total nutrition. It only provides the nutritional needs we know about. It cannot replace real food.

I have to ask, did they get that melanoma?

We will amass our collective positive energy for you both.

Jan

Wow!!!! I think you and David may be up there leading the pack for complications. Isn't that a nice dubious distinction.

You might want to PM Chuckus and/or Ranae. They're both very good with FAP and both do much research. Chuckus has FAP and Ranae's husband, daughter, and son have FAP.

This doesn't seem quite fair since FAP'ers usually do quite well after surgery. But apparently David doesn't do things the easy way. There are two other members here you might want to PM. Connie (her son Thomas has a j-pouch) and Cait (her husband Dan has a j-pouch). They both had UC. Both Thomas and Dan were vying for most days in the hospital. I believe Thomas was the clear 'winner'. Both are doing fine now. With the exception of Chuckus, the other 3 people I mentioned are the wife or mother of a poucher so they can probably really empathize with what you're going through.

I hope this is a very short and uneventful stay for David. And welcome to the site, even though we really don't like to see new members here because we know what that means. I think every single one of us wishes this site could close down because they found a cure for UC, CD, FAP, HAP and any other of those naughty diseases.

kathy

Thank you, guys.
We left at 3am Friday morning when David's temperature hit 102. It turns out that David had pneumonia, which was great news for all of us (and I'm really not being sarcastic). When ever we've had to do a midnight dash to the ER in the past the docotrs would immediately think that David's picc line was the source of the infection and pull it, or we would be afraid David would have to go into surgery again.
The funniest part is, all the doctors (and we know quite a few, even in the ER) always asked us after David was diagnosed with pneumonia "So, he just had a fever? No coughing or anything?". I would have to explain to thme that on Thursday David complained of chest pain so I did my usually 'quad' (check his blood pressure, heart rate, temperature, and blood sugar) to find out if anything was off, and that's how we noticed the fever. We got David in so early, and the doctor's doused him with anitbiotics so quickly that they were able to send David home on Monday. And David's doing great! No fever, or any other signs of pneumonia, but my mom and I are keeping really close tabs on him.
Jan Dollar- David did have one of the doctors remove the melanoma, but that doctor also wanted to go back and do a sentinal node on David when he was stronger... Unfortunately, David hasn't been strong enough yet, but we're going to contact that doctor soon and find out what he wants to do now.
And thank you Kathy Smith for some contacts to fellow FAPer's and their families.

Jackie