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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1 comment:

Christie said...

I am so glad that the end of this hospital stay is in sight.

What a wonderful tender mercy of laughter that you were blessed with. I love those glimpses of hope and moments of what the future has to offer:)

Your way with words is amazing. Loving every word!

You are in our thoughts and prayers.