A progress report on Days 16 – 23

Ok. Look. I am far too tired to proofread this post. I am sure I’ve got some sentence fragments and run-ons down there in that rambly mess but Hell, I’m too tired to even spellcheck the damn thing. I just sat at the keyboard and banged it out when really I should be sleeping. But you have all sent so much love and support that you all deserve to know that Liam is doing ok. Still not great but ok nonetheless. Thank you for your thoughts and prayers and I hope to get this kid home soon so I can blog a bit more regularly. Thanks also for not holding my bad grammar against me just this once.

*****

The downside to a sudden burst of creative energy in the beginning of a hospital stay is that when you suddenly go quiet everyone assumes that things aren’t going well. Unfortunately for us this week, that assumption would be correct.

A couple of weeks after Liam’s surgery his gut still wasn’t really waking up and doing its thing. He seemed to be healing from the surgery fine and a delay in digestion is nothing new for Liam so we didn’t start worrying until the fevers started. From last sunday to Tuesday afternoon Liam was wracked by fever spikes up to 105 degrees. With fevers come the seizures of course and so along with treatment for septic shock neurology pushed to have an eeg which lasted almost 30 hours.

I fought them off for a few days arguing that the need for cold compresses two keep Liam from literally burning up superceded the need to know if he was seizing. Of course he was seizing. He has been taken off of his two most effective seizure meds (no IV substitute) and he is experiencing every trigger that we know of — pain, fever, and exhaustion. I was actually surprised we weren’t seeing more seizure activity and I told them so.

The septic shock made for some pretty nasty days. Circulation and perfusion problems from the fevers, blood pressure meds and the fine balance of two ‘pressors’. After the usual battery of tests it has been confirmed (as well as it can be) that Liam’s bloodstream had been infected by the perferation in his appendix. His bloodstream had in turn infected his central line which in turn would re-infect his bloodstream a cycle that obviously can only be stopped by the removal of his central line.

Access to Liam’s bloodstream when he cannot recieve oral feeds is essential. Liam is a terribly hard stick and his little arteries and veins have been pocked and prodded so much that throwing in another line somewhere is not as easy as a doctor’s order. Luckily for us Hasbro Children’s Hospital hires the best around because the young guy who came to put in Liam’s PIC line arrived with such confidence and compassion that he quickly put our minds at ease.  Karin and I signed consent and went for a walk. I’ve stayed to watch this procedure before and knew that I couldn’t see that much blood again. (especially if they had to try more than once.)

While we sat downstairs making buttons Karin got a feeling.

“This is it, honey, The line is the problem.” (We still had no proof at that point)”Andrew is gonna get that PIC in and he’s going to get better.”

“I hope so.” I said.the fever spikes and circulation problems had us both beyond frazzled.

“No I’m saying that in my Mom gut I can tell that things are going to turn around today.”

That’s it. That’s all I needed to hear. ALWAYS TRUST THE MOM GUT.

After about 45 minutes we decided that if they didn’t have a line in by then we better be in the loop as to why so we headed upstairs calmly and confident that things were going to be ok.

We approached Liam’s room and I noticed that the door was open which was a good sign since its a sterile procedure. An hour after he walked in the door Andrew the PIC team Nurse Practitioner looked up at me from behind his sterile mask and yelled “We got it in Dad! We’re just waiting on an x-ray to confirm its placement.”

Music has never sounded so beautiful.

That’s when I cried.

It was all going to be ok. Karin’s gut feeling about the source of the sickness and the fact that we had clean access to Liam’s bloodstream to attack the infection with antibiotics washed over me. Liam was going to be ok.

He hasn’t had a fever since tuesday afternoon. drugs are doing their jobs and by thursday morning Liam was lucid enough to give us some kisses and smiles while we gave him his bath and combed the eeg goop from his hair.

His gut is now the major stumbling block again. The septic shock shut things down pretty good down there and Liam is having a heck of a time getting going again so we are still not feeding him anything. We’re all confident thanks to ultrasounds and CATscans that there’s no mechanical blockage but just an ileus that needs a jumpstart. If we don’t see poop soon though Liam will head to imaging again but for a barium study this time. Until then we wait and hope the distention in Liam’s belly recedes.

But we’ve been here 23 days now. And waiting isn’t so easy anymore. And just the fact that we’re here is enough to make us all frustrated, exhausted and pissed off grumpy.

7 comments

  1. Hallelujah! Frustrated, grumpy and even pissed off those of us who love you can handle–but coming to a spot where the mom gut feels it’s going to be OK–priceless!!! Continuing to keep you in thoughts and prayers! Squirrels

  2. Good to hear about progress! We all pray for poop!
    Poop comes from the “good” bacteria (acidofilis, bifidus, et al) helping, if not actually digesting the food. No food, no poop. No “good” bacteria, no poop. Septic shock anti-biotics, no “good” bacteria, no poop. More research for Mom and Dad. It’s ALL been about balance, it still is. Something more to balance, that’s all.
    Eat, Breath, Balance, Poop
    Love and Light,
    Bill and Judi

  3. I was so happy to see this progress report!!! I’m glad those rough days are behind you and I will join everyone in praying for poop. Love and hugs from all the Cebulskis to you, Karin, and Liam! 🙂

  4. Glad to hear they have a new line in and praying for poop too, don’t forget to try and look after yourselves as well!! Your brave Lion needs you to have strength for his release xx

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