Here it is 11:36 PM on Wednesday evening and I'm sitting in the Pediatric unit of the hospital counting down the hours until we can take Jacob home with us - FINALLY!
I just need to hold out until Saturday afternoon and our sweet little boy is ours! No more pokes, no more chords or cables. No more waking him up to get his stats every hour, weighing his diaper, measuring his formula intake, or charting his every movement.
I came into the hospital today after being away for waaaaay too long and met with the shift nurse for the evening. There was Jacob, laying wide-eyed and annoyed at having to STILL lay in his little metal crib. It was the first time I'd actually ever seen him annoyed. My little boy actually has an opinion! lol
So I got permission to 'unplug' him from the monitors and just walk the halls with him for a while. We were stopped several times by passer-byers as they ooh'd and aah'd over how cute he was, we gave updates to some of his previous nurses about his discharge status, and he got to take in all of the new sights and sounds that he'd missed out on by being confined to within 2 feet of his crib for the last 3 weeks. Even as he began to nod off, he struggled to keep his eyes open so that he could see the new colors around him and look in the direction of all the new sounds. Finally, the exhaustion got the better of him, and he fell asleep in my arms. And I finally got to feel like a normal mother, walking the halls with her sleeping baby in her arms. It's the little things that make one's day (or in this case, evening).
Jacob is doing GREAT! He still has an IV in his arm which they are hoping and praying will hold out just a couple more days. Gone are the heart monitors, and cables monitoring his respiration rates and heart beats. No more beeping from the monitors sounding every time his vitals dipped even 1 beat or 1 percent from the desired levels. His room is bigger, more secluded, and I can finally bring Courtney to come visit without risking getting asked to leave because she's too little to visit her baby brother.
My concern then became that the faulty valve was their original reasoning behind the ecoli. So, if the valve wasn't the issue, what was? Dr. Fry explained that Jacob had a urinary tract infection which is what resulted in the sepsis and the ecoli. I asked her why, since he had been on antibiotics from the day he was born, the original antibiotics didn't kill all of these infections the first time around. She explained that the infections could have occurred during the week that he was home because of the urinary tract infection. She also said that it was likely that the original antibiotics just weren't sensitive to the existing infections, so a new type of antibiotic was needed to treat those new infections. I asked her what we needed to do to prevent this from happening again and she said that there was nothing we could really do. Hmmmm. Not very comforting. Go in for a stuffy nose. Spend 3 weeks in ICU. No way to prevent it. Great.
I talked to her about the clotting issues I'd originally talked to Dr. Mueller about and asked if any information had been dug up about whether Jacob had been tested for the coagulation issues. She said she didn't know anything about it, but said that that sort of testing wasn't normally done unless clotting issues were in the family history. I explained to her that Jacob's uncle had been diagnoses with hyper coagulation, my father had a stroke, I had 1 sister who had a clot from birth control, and another sister who had a clot from a sprained ankle. So, obviously, clotting issues are a definite possibility with Jacob because of his family history. She said that she'd make sure to note it in his chart (that binder is like 3 inches thick with a rubber band around it to keep papers from falling out!!!) and gave me a list of questions to ask Les' doctor about his hyper coagulation and instructed me to request the test before each of his operations so that it can be addressed with his surgery and they can treat him for the possibility of clots.
All in all though, I'm fairly confident that we're bring Jacob home as healthy as we can get him, and that we have the house as prepared for him as possible. I'm holding my breath and crossing my fingers that all will go well for the next couple of months until his surgery. Until then, I have this sinking feeling I'll become the ubber paranoid mother who is going to freak out about every sigh, every cough, and every sneeze that occurs in our house. Just a few more months, right?
The next phase? Jacob gets tested on the 15th by the physical therapist to assess his level of functioning and the amount of care and therapy he will need in the upcoming months and years to help him reach his milestones in a timely manner. Hmm. This could be a very interesting assessment.