Had another crazy night and morning..again. No sleep (all three of us), lots of pain, and too much activity/interruptions to get Stephen to calm down and mellow enough for the pain to subside. He actually fell asleep last night around 10 PM watching tv and I thought we were going to be good for the night, but by midnight, he was up kicking his legs crying and in pain. After that, we spent the entire night chasing his pain.
I had told the pain person who came in the evening that four hours between his doses of oxy was too long. The oxy was taking about 30 minutes to work and then only lasting for about 2.5-3 hours. So for that last hour, he was in a lot of pain. And then he'd get so worked up, that it would take longer for the oxy to kick in, and so forth. A vicious cycle. He did get a few doses of nubain in between, but it wasn't enough to get him through. I think somewhere around 4 am we finally asked them to give him a rescue dose of morphine, but by then, it didn't even touch him.
And then add the pain on top of his issues with GI right now, and it's become a really crappy situation. He's apparently extremely full of poop (I never would have guessed he was constipated, but the surgeon saw it while he was operating). So they've been giving him all sorts of things to try to empty his bowels, but the pain meds are working against it. And then every time he bares down to try to poop, it hits even more. Again, a vicious cycle.
And this morning while he was sitting on my lap, I notified the dressing on his central line in his neck was wide open again. So they finally made the decision to pull it out. That became a whole ordeall in itself (think total restraint while they pulled the layers of tape off and out of his air, cut the stitches and pulled it out of his jugular vein), but it's out thank god and I think it will make Stephen more comfortable in the long run. Unfortunately, it hasn't happened yet.
Aunt Jess, Chloe and Norah did come for a visit today, but with everything going on they could only pop their heads in to say hi. But Stephen did respond to the girls which was nice.
Unfortunately, stress is compounding upon no sleep which is compounding on watching your child writhe in pain over and over again and the feeling that he's so traumatized at this point, it can't be reversed which is equaling very short fuses. Something has to change today, or I'm going to lose it or someone.
Don't underestimate the pain of constipation. I had the same problem after my C-Section (meds bound me up, abdominal surgery made pushing extremely painful and I went nearly a week without going). The pain becomes really bad... The best way I can describe it is as extreme menstrual cramps that are unrelenting. Can they give him an enema?
ReplyDeleteSorry to hear that Superman and his Mommy aren't having a good day. The good thing is that the kidney is working and that Stephen is well enough to acknowledge pain. I know that isn't much of a relief to the situation, but I am sure when those staples come out he should feel much better. He is tired of everyone poking and sticking him--we would be too! Hopefully relief will come soon. In the meantime we will keep those prayers and virtual hugs coming your way.
ReplyDeleteLove,
Aunt LuAnn
Anonymous above is correct! My living kidney donor's worst pain was not from the surgery itself but from constipation. I'm so sorry for all of you. I can't imagine what it's like to see your child in such pain. They can give only so much oxy because it can suppress breathing. Such a conundrum. I hope you can all get some rest very soon!
ReplyDeleteI'm so sorry things aren't going exactly according to plan!!!! We're praying for ALL of you. What a tough little guy you have. I can't Reddit until this is just a memory for you guys and you can start enjoying life without dialysis!!!
ReplyDeleteDear Lindsey,
ReplyDeleteAs someone who has been in a similar situation, there is nothing worse than seeing your child in pain and not being able to do anything about it. Please know that you are in my prayers for a quick recovery for Stephen and a restful night for all of you.
I promise he isn't traumatized for life. My son had a liver transplant at 19 months and the first week to 10 days were awful but he is 3 now and doesn't let much in this world phase him except if he thinks you are going to hold him down for something ;).
ReplyDeletePraying for relief for all of you. I cannot begin to imagine the depth of emotions you are all feeling on top of near exhaustion. May you find comfort in knowing soooooo many people are praying for you and walking this journey with you.
ReplyDeleteSheri Roth
Hang in there, Lindsey. This too shall pass (sooner rather than later in the literal sense for Stephen). You've got great doctors, a great facility, and a patient with the heart of a champion. Our thoughts and prayers are with you from Houston.
ReplyDeleteLove,
Matt & Donna
Lindsey, The first week to 10 days are the roughest, My husband Stephen had a kidney transplant and then 2 years later had a pancreas transplant. After the 1st 10 days he was great. If you can get little Stephen to hydrate and maybe a warm blanket on his belly, the bowl pains may subside. I am praying for patients for you and your husband, and for Stepehn, a speedy recovery and a healthy beautiful life. You have a real champ there!!! GOD Bless you all.
ReplyDeleteBest Regards,
Tracey
Just read on facebook that Stephen and Lindsey are doing better, as of late last night. YEH!
ReplyDeleteL - if you go up to the psych ward, and scream your brains out, maybe the residents there wouldn't even notice, but it might make you feel a little bit better? Couldn't hurt, right?
ReplyDelete