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Saturday, April 28, 2012

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.

Tuesday, April 24, 2012

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.

Friday, April 20, 2012

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!

Sunday, April 15, 2012

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, April 13, 2012

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.

Thursday, April 12, 2012

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!

Tuesday, April 10, 2012

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.

Friday, April 6, 2012

Pity the Fool

One thing I can't stand is self-pity. It runs rampant, especially on social outlets such as Facebook. It comes across as whining, annoying, and self absorbed. No one wants to attend a pity party.

I've come to find out that life isn't so much about the situations that we are put in but rather our attitudes. The Debbie Downers who complain about everything in their life are making themselves miserable when someone with the same circumstances who goes through life with a positive attitude let those same things slide off their back and enjoy life, no matter what comes.

Yesterday I reached my breaking point, when after 6 days in the hospital we were told it would be 4 more until Jacob would be discharged. I didn't want us to have to be in the hospital on Easter...again. I didn't want to be stuck in this jail hospital any longer. I became angry and started to have a pity party for myself. I posted a post on my personal Facebook page and then cried in the bathroom. I then figuratively slapped myself across the face and told myself to calm down. It is what it is.

I couldn't change the situation but I had every opportunity to change my attitude. I decided that it would be best to leave Jacob's bedside (which I have sat next to for 6 days) to find a place to clear my head. I took a drive to the local mall and walked around, getting some much needed exercise in. I tried on a few pairs of jeans and some shirts, which were badly needed as I only remembered to throw one shirt into our bag as I packed in a rush on Saturday evening. I listened to the music drifting from the stores and people watched. I swallowed down tears as I passed an older man sitting on a bench, wishing that my dad had been allowed to reach that age. I then held back chuckles as I exited a store a short time later and saw this man still sitting on the bench as I realized his perfect ivory coloring reminded me of a corpse. It was a weird reaction, and maybe a bit morbid, but the thought that maybe I was losing it a bit made me feel better in an odd way.

Just changing my attitude made my day a whole lot better. I arrived back at the hospital refreshed and was welcomed by a happy little boy who had made Easter crafts to decorate the room while I was away. It was a win-win situation.

Sometimes what we think is going to happen turns out to not be as bad as we once thought. We were told this morning that instead of Monday we are now being discharged today. Jacob will be going home on antibiotics and IV nutrition. We will have to watch closely to make sure the fever doesn't return (and now monitor a spot on his leg which started out as a scratch but now has a big red bump on it...hoping the redness does not increase) but we get to spend Easter at home as long as it continues to go well!!

My mantra is the Serenity Prayer, which many people know the beginning to but don't often hear the prayer in it's entirety.

God, give us grace to accept with serenity

the things that cannot be changed,

Courage to change the things

which should be changed,

and the Wisdom to distinguish

the one from the other.

Living one day at a time,

Enjoying one moment at a time,

Accepting hardship as a pathway to peace,

Taking, as Jesus did,

This sinful world as it is,

Not as I would have it,

Trusting that You will make all things right,

If I surrender to Your will,

So that I may be reasonably happy in this life,

And supremely happy with You forever in the next.


~Reinhold Niebuhr

Thursday, April 5, 2012

Still Here

Today marks day 6 of being in the hospital. I still don't have an answer to when we will be able to go home. Jacob's fever has been gone for 48 hours now but he just isn't eating and while his counts are rising they are still fairly low.

My biggest hope is that his appetite returns soon. Yesterday I worked all day just to get him to eat a few bites of food. It's exhausting. They started some IV nutrition but if he doesn't start eating soon I'm afraid that it will be a feeding tube next.

I know it sounds selfish - but I'm being honest here when I say that I just want to go home. I want to sit out in the sun and work in the dirt. I want to be around all three of my children and be with my husband. I know that the stem cell harvesting is coming up and next Friday will be admission for another 5 day stay. I'm starting to wonder just how much more of this hospital I can take - and yet I know just how much of this hospital is yet to come.

Edited to add: Doctors were just in and it sounds like we won't be released until Monday. I want to either scream or cry - ANOTHER Easter in the hospital. That will make 10 days in a row stuck at the hospital. With another 5 day stay coming up a few days after we are released. I'm frustrated right now.

Sunday, April 1, 2012

Another Day, Another Stay

Jacob and I headed back to the hospital last evening due to him having a fever of 102. Jacob was sleeping all day yesterday and feeling nauseated. I didn't think much of it because I was feeling the same way, but once the fever spiked it was off the the hospital for us.

He has been battling this fever all night and all of today and has continued to feel nauseated. He won't eat much and there is talk of a feeding tube being put in but I pray that his appetite picks up soon so that he can avoid that. Lab tests have come back negative on everything so far, yet showed low platelets so he had a transfusion last night. I'm assuming that he has the same bug as me, but because his white cell count was down to 0.2 on Friday it is really just hitting him hard. He is asleep next to me, occasionally a whimper emerges from his lips from deep within dream land.

We will be here for a minimum of three days (hospital protocol for fevers). Maybe we will have the stem cell harvesting even before leaving for home. We will return on the 13th for another 5 day stay.

I really wish I could say that all last month was an April Fools joke, but everyday I awake to the reality of what last month brought to our lives (and took away). My heart is still processing it all.


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