There's No Place Like Home!

That saying rings so true. We are all home and back together again. Jacob is feeling good and sitting with his brother and sister on the couch, watching a movie and crunching on pretzels. He has not stopped grinning since he arrived home.

I want to thank those of you who sent Jacob a card while in the hospital. Mail call each day was a thrill for him and your notes were so sweet. You guys are awesome for making a little boy's day brighter!

Will update more at the beginning of the week. For now I'm going to hug my kids and cuddle with my husband.

Odds and Ends

The doctors decided to finally do a scope today. After a week and a half we have answers on what is troubling Jacob. A large ulcer was seen in his intestine, with probably several more behind it (they didn't continue the scope after finding the first, moving past the first one could cause irritation that they wanted to avoid). These ulcers were probably caused due to his last chemotherapy round.

Jacob is now taking a syrup four times a day to coat and heal the ulcer(s). Because he is now on the mend round two of chemotherapy has been started this evening. This is a five day round so he should be able to go home on Saturday, making it 25 days this month that he spent in the hospital. We are all looking forward to being together again!

Jacob and I are trying to stay sane in the hospital. Trips to the library or walks down to the cafeteria. Jacob hasn't been into the Child Life crafts this visit but I try to get him to go to the playroom, even if it's just to play on the computer for awhile.

We have been watching movies together (Batteries Not Included) and television (Extreme Cheapskates is a new favorite of both of us).

Most of all, we are just looking forward to going home and hope we have a week or so at home until we need to come back for stem cell harvesting.

Groundhog Day

I've ignored this blog. What's the point of writing a post each day when it is the same thing over and over? If you have ever seen the movie Groundhog Day; such is our life! One month since hubby has been able to work, 17 days in the hospital just this month (with more to go), 9 days in isolation, 7 days without eating, one day of being hungry (yay!), 2 days of a break for myself as my husband and I did changing of the guards and I spent some time with my other two children, countless doctors and tests. Vomiting once or twice each 24 hours. Bloody stools still (more blood then stool). Zero answers. The surgeons, GI doctors, and oncologist all toss the ball amongst themselves. Telescoping intestine? Scans aren't showing that. Infection caused by chemotherapy? Maybe, but it never presents this way. Other infection? All tests have been negative. No fevers either. The word puzzling is the only conclusive answer. Jacob will be here through the weekend - hopefully improving and healing more. His five day chemotherapy will start on Monday. With this extended stay, I wanted to let you all know that if you are in the USA and would like to send a card to his hospital room, as long as it is sent within the next few days, he should be able to receive some fun at mail call each day!E-mail me at babys_mama1 "at" yahoo.com for the address, if interested. And please keep those prayers coming!

Round and Round We Go

Same story, different day. For the past two days Jacob has done while during the day, only to have intense cramping and vomiting at night. He continues to have bloody stools (about once a day). The x-ray looked better yesterday so they let him finally eat and drink - he had about 6 oz. of apple juice and a few bites of chicken noodle soup. And then he had cramps and vomiting again all night.

He is sleeping yet as I write this and will be going for an x-ray soon. While the doctors think this (and by "this" I mean that they are still leaning towards telescopic intestines but aren't ruling out an infection yet as they have no conclusive results) is resolving they aren't sure why it's better and then worse at times.

So basically, we know no more then we did on Thursday when we arrived.

Friday the 13th

"Do you get queasy at the sight of blood?" asked my aunt, a few weeks ago when I mentioned that I was now drawing Jacob's labs at home.

I answered "no"; so long as blood is not gushing from a terrible wound I am okay with the sight of it.

I suppose that's a lucky thing since I've been seeing so much of it the past few days. From a bright red toilet bowl on Tuesday to dark red blood seeping into his pants, down his legs, and into the potty now. Yesterday and last night he had to change pants several times and I found myself washing him up several times and collecting his stool in a cap on the potty.

Luckily, he has had no more nausea since last night and the blood doesn't seem to be coming as fast as it was yesterday. It seems as though he may be turning the corner on this whole thing. Right now he is just angry that he isn't able to eat or drink until the surgery team makes rounds. How unfair that they are taking their sweet time to get here - this boy has not eaten in well over 24 hours.

The news from the GI team this morning was that the C-Diff culture came back negative. They sent some more samples off to the lab but they are leaning towards a telescopic intestine again, which they think has resolved itself. The bleeding would then be from inflammation in the intestines. It's still a wait and see thing, but the situation seems to be getting somewhat better.

Prayer Warriors

I felt such relief yesterday when I decided to have hubby take Jacob to the doctor for his stem cell count today. I figured that they may have to stay overnight but that at least it was a simple procedure and I couldn't fathom the thought of spending another night in the hospital so soon.

I awoke with hubby and Jacob this morning and sent them on their way. A few hours later I hear that his hemoglobin and platelets are low and he is getting transfused. Looks like the stem cell harvest won't happen and chemo will be pushed back to next week.

A few hours after that I hear that Jacob presented with underwear full of blood and that the doctors were now concerned that it was not the fissure causing that yet something higher up in the intestines.

My gut feeling told me to go be by my little guy, especially since the doctors were considering doing a scope. Hubby could have handled it just fine, but I knew that Jacob may want his mommy.

I arrived at the hospital to Jacob who was experiencing extreme nausea and he started throwing up soon after I walked in the door. The potty was bright red after use. Doctors begin to suspect a telescoping intestine.

An x-ray, ultra-sound, and CT scan later the surgeon held a consult with the GI doctors outside our room for over an hour. The surgeon doesn't think it is a telescoping intestine after looking at the CT scan and examining his tummy. He suspects an infection in his small intestine which is causing inflammation and possibly ulcers which is causing all this bleeding. This in turn is causing Jacob's hemoglobin and platelets to drop...which can in turn make the bleeding worse.

Lots of lab work and tests are being done to figure this out. He is still have bleeding and just isn't feeling well, though the past couple hours have found him sitting in bed watching television, instead of sleeping and throwing up like the earlier hours.

I'm asking for some prayer warriors tonight. That the doctors will figure out what this is quickly and get him on the path to recovery. That his body can heal and that he can have a break from sickness. That his next round of chemo (moved back to next week) will not result in more sickness and infections. Please keep the prayers going and put him on any prayer chains that you know of. Thank you all so much!

Coming or Going?

I seriously feel like I'm not sure whether I'm coming or going around this house. Today Jacob and I made the 140 mile round trip to the hospital to see if his numbers were high enough for the stem cell harvest. They weren't. As we were getting ready to leave Jacob had to go potty. As he finished I heard his little voice behind the bathroom door, "Mom?" I opened the door to see a toilet full of blood.

Keeping calm for him I told him to finish wiping and not to flush. I told a nurse what had happened and everyone seemed to be flying by at once...calling doctors, checking the potty, getting a room ready for him. Luckily, it turns out that it is a fissure, which is the best possible scenario for this...though there is now a risk of infection. He was hooked up to fluids for 2 1/2 hours and then sent home with ointment. That is one scene that a mother never wants to see. :(

We will be heading back on Thursday to recheck the counts and see if it's time to harvest. We will either spend the night then or come back on Friday for the start of another 5 day chemotherapy stay. I've decided that we will try one 24 hour shift with hubby at the hospital and myself at home. Hubby is willing, but Jacob balks at the thought...I think he will see that daddy can be fun and daddy can find out that sleeping on those chairs aren't fun!

On top of all this, Jacob has been sick over 24 hours with nausea and vomiting. We aren't sure if it is a bug, but I'm beginning to suspect that maybe it's the antibiotics he was on - and thankful he finished them this evening. Hoping and praying that he feels better tomorrow.

I'm off to work on my to-do list for tomorrow. It may be one of the only days in a week that I will be home to get things done.