Thursday, December 2, 2010

So Close to Discharging from the Hospital We Can Taste It!!

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. 

Jacob With his feeding tube.  Down Right LivingI 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. 

Down Right Living: Jacob with his dad
I sat down with one of our doctors before we left PICU and discussed the future, and what had been accomplished so far.  On Wednesday they did the final test on Jacob, inserting dye in through a catheter and checking his major organs, specifically his kidneys to see if anything was wrong and if the valves of his kidney were working.  The results said that everything was fine, so surgery on his kidneys is not necessary. 

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.
Down Right Living: Jacob Allred with his feeding tube
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?

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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.

Sunday, November 28, 2010

7 More Days to Discharge...?

Well, that's what the doctors are telling us at this point.  I'm trying to be hopeful, but I'm not holding my breath.  Although we have had no new developments in the last couple of days, I'm not foolish enough to think we're completely out of the water yet either.

7 more days til discharge and how my baby's laughter rocked my world.
I got to finally sit down with Dr. Mueller tonight and pelt him with questions about Jacob.  He was a good sport and very patient with me as I asked question after question, looking for clarification about all of the different information I'd heard from so many different sources over the last few weeks. 

We discussed Jacob's IV and what will happen when (not if) it fails and they have to take it out.  He explained that a lot has to do with how long the IV is able to work.  He's hoping that it will continue to work for another 3-4 days (I'm thinking we'll be lucky if we get another 24 hours - Jacob's already crying when they try to flush the line).  Once they have to pull the IV out, he will then get together with the doctor from the Center for Infectious Disease and find out what the chances of a rebound infection would be if they stopped antibiotics early.  If the doctor determines that the chances are still too high for baby Jacob then Dr. Mueller would have to weigh the physical pain it would cause Jacob to try to give him another IV (several pokes and likely an hour or more of digging and crying) versus the pain of 1 shot per day into his muscle for the duration of his antibiotic treatment.  He said that if the IV came out and they determined that there were just too many shots, he would personally go in and install a line using a local anesthetic.  He just didn't want to put him under general anesthetic a third time because it was affecting his feeding, which could ultimately affect the amount of time it took for him to leave the hospital. 

We discussed his blood and the clotting issues.  I asked a few more questions than he could answer (the problem with having so many doctors looking at so many aspects of Jacob.  The Hematologist just hadn't conveyed to him whether he had done testing on Jacob and what those results were).  So, I'm expecting a few more answers in the next couple of days once he's researched Jacob's file and has been able to get together with the blood doctor.  We discussed the fact that there is a history of clotting issues in our families.  My father had a stroke, one of my sisters had clots from her birth control pills, another sister had clots from a sprained ankle, and my brother - in - law has had several issues with clots after surgeries.  The question for us is whether that family history justifies the amount of blood that they may need to draw from Jacob in order to do the specialized testing needed to check for a blood disorder.  It's my guestimate that right now, because of his condition and the sheer amount of blood needed (we're not talking a few drops - more like viles of blood) to do the testing, they will just modify how they treat him following his surgeries taking into consideration his family history.  And if clotting continues to be a factor, THEN we'll re-address the clotting. 

Monday Jacob has yet another test, although I think this is the last major test they will be doing on him before discharge (knock on wood!)
 They will be injecting die into him through a catheter and checking all of his major organs to make sure that they are all functioning correctly and that there are no other issues that need to be addressed (See? Not holding my breath. There is STILL possibility for catastrophe).  I think they're wanting to double check the kidneys and look at the faulty valve further as well as see if there were any other issues that were accidentally missed. But if all goes well, it should be smooth sailing from there. 

I was talking to Cathy, one of Jacob's nurses and she was examining the area from Jacob's last pick line.  She noted that the suture was right on his jaw line, which she stated meant that every time he moved his head while he was sleeping, crying, being moved, re-positioned, etc it would cause tension on that line and that was most likely what had caused the line to come out the second time - bad placement of the sutures on a place where there would be lots of movement. 

All I can say at this point is "what's done is done".  Let's move on and quit focusing on what has happened, and focus on what we're going to do to fix the issue we have at hand - how are we going to get all of Jacobs administered to him in the least amount of pain.

AND ON A BRIGHTER NOTE:  I was holding Jacob today after a feeding and the little boy LAUGHED in his sleep!  This was not a gas bubble, or a little stutter from breathing issues, etc.  It was an all-out giggle (something I didn't experience with Courtney until she was well over 5 or 6 months old!).  I remember thinking to myself that I couldn't remember anything his short little life that he could draw from to make him so happy he'd want to giggle, but for the next 15-20 minutes, I'd see little glimpses of smiles on his face as he continued to dream.  It totally made my night.  I wished I'd been able to take a picture!

It was then that I decided that this little boy will bring nothing but smiles, laughter, and joy to our family when he finally gets to come home.  He will bring a whole new perspective of love and happiness that we have been unable to have on our own without him.  I'm looking forward to life at home with Jacob.  I'm looking forward to lots of smiling and oodles upon oodles of laughter and giggling.  For that, I am holding my breath and trying to wait patiently for that day to come. 

Hurry home Jacob! We're ready to start our lives with you!!

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