Frustrating

(Original appeared May 12, 2016)

Having been on this journey for over a month, we have learned to temper our excitement and anticipation that something wonderful might happen. This morning, we had hoped for Deb to be able to hold Jacob close, maybe even skin-to-skin, while they changed out his isolette. We knew that strange things happen, medical results can alter any “plan”, and yet we still looked forward to this day. As Deb arrived at his hospital room for the big event, we learned that Jacob was in need of a blood transfusion. That procedure basically puts a halt to everything else. The staff must perform regular assessments at tight intervals, and we really can’t touch him during that time, which can take more than an hour. In short, the fact he needs to get the transfusion pushes back the mommy-holding experience; at best until this afternoon, but more likely until tomorrow.
His blood pressure has dropped a bit today and so they are increasing a medicine to help with that. This is the same medicine that is preventing us from feeding him. We’d like to get him weaned off of that soon to restart the feedings which haven’t been available for over two weeks, but we must be patient for now.
We’ve been waiting for the results of his blood culture to see if the infection is still there before inserting the PIC line. That line is crucial for the long term, and will be used to give him meds, etc. Right now, we’re on borrowed time using IV ports in his hands. Today we learned that the latest culture was positive for infection. So long as the blood cultures are positive, it’s not a good idea to insert the PIC line which would just give the germs one more place to attach and grow. The doctor will try to take another blood culture today when he begins the blood transfusion, and we’ll know more in another 48 hours. We’re hopeful that, with the umbilical line removed and that possible source of infection being gone, the culture results will come back negative this next time.
There’s also a sense that one thing needs to be well before we can move on to the next step to get that other thing well. For instance, I mentioned the blood pressure medicine and its relationship to feeding him with mom’s milk. But also his body isn’t processing bodily fluids well, and so the antibiotic that he’s receiving for the infection is lingering in his system. He can’t get another dose until that content drops and it will only drop if his body processes it out. We can’t really attack the infection without the antibiotic doses. So long as the body won’t process fluids (including the antibiotic), we can give him more antibiotic. Without the antibiotic doses, the infection may remain. So long as the infection exists, we can’t get the PIC line in. Without the PIC line, there’s continued anxiety over the use of temporary IV blocs in his hands.
This is all part of the “two steps forward, one step back” routine. We’re very glad that the nurses warned us about this up front – it makes things easier to tolerate during times like this. We remain hopeful, always, because of the great hope that is in Him and His overall plan for us and for Jacob.
One certainly very good bit of news today: his respiratory system seems to be doing much better. They’ve been able to wean his oxygen level down to the lowest point I’ve seen him at in a long time. So we’ll hang our hat on that for now! -R