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.
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.
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.
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!
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.
Amen.
~Reinhold Niebuhr
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.
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.
