UPDATE: Broviac removal is complete. They didn't even have to cut the little guy. The surgeon was able to work the catheter out gradually. He'll be bandaged for a couple of days then home free. Conveniently, they also changed his g-tube for us while they were in there. That isn't a particularly painful thing to do, but can be uncomfortable.
Tomorrow is a big day for little Isaak. A very big day. As his blood work has continued improving, the docs were comfortable with scheduling Broviac removal. We don't have a time slot yet (please don't let it be 6am, please don't let it be 6am!), but at some point tomorrow, Isaak will be Broviac free for the first time since July 13, 2010. The little fella has progressed beyond the most optimistic expectations of his various doctors and this is the latest sign.
The procedure is pretty minor, but he will have to be sedated/put under for a brief period. Apparently, we were extra-careful taking care of the Broviac and the internal cuff that holds it in place is really embedded in tissue. It's
supposed to be that way, but the surgeon told us that in a lot of cases the catheter will just slide out of the patient when it's time to remove it. I guess this means we are good parents/nurses...
To top off the joy associated with this event, we have started dramatically reducing his g-tube feeds. A few weeks ago they let us drop it to 20 hours, then to 16. And 2 weeks ago we received clearance to start dropping by 4 hours a week. Right now, he's only hooked up for 8 hours overnight. That will drop to 4 hours on Friday and (pending positive blood work) nothing next Friday!
If this happens I'm not sure exactly what Bekka and I will do. It will be the first time we've had a little boy not hooked up to tubes since Ollie was 7 months old. I expect there will be dancing and tears of joy. You can't even imagine...
Isaak only has a few blood test results that are out of range, including phosphorus and a couple of liver enzymes. He'll probably have to continue getting monthly or bi-monthly blood draws for a bit to make sure he is getting fully hydrated and not having kidney or liver issues (thank you TPN and preemie-ness). That was one nice thing about the Broviac - they could draw labs without having to stick him. We'll still trade (not sure what Isaak's opinion is on this yet). Much like with the Broviac, the g-tube will stay in place for a while to make sure he is doing well enough to go without.
In other areas, Isaak is doing fairly well. He is still lagging in gross-motor skill development and muscle strength but has made really good strides the last few weeks thanks to weekly physical and bi-weekly vision therapy. We work with him everyday to improve strength. We have been able to play with him more and more as he's spent less and less time hooked up to feeds. He appears to be responding well. Why is he lagging his sister? Other than being a male preemie (a huge strike), he was also unable to be handled and/or moved as much as Penny. Thanks to the tubes, we actually had to
restrict his movement. Even though preemie developmental milestones are based on adjusted age, they frequently lag in development. By 2, they are usually caught up. While mommy is very confident, daddy waffles between extreme concern about Isaak's physical skills to very impressed with how he's doing on a given day. I'm afraid that Ollie left daddy overly sensitive to these things. Here's to more progress and less worry!
He has a follow-up at Duke Eye Center on Thursday (busy week). The vision therapist from the
Governor Morehead Preschool has been quite happy with how he's responding. We'll see how the eye is physically doing this week and go from there. Externally, it looks to be healing well and he is even still tracking objects with both eyes. His left eye looks a bit odd with it's missing lens and huge pupil, but if the eye is functional at all, we are ecstatic parents.
Looking back over entries in the last months, it's clear that Penelope has received short shrift due to her "boring" lack of medical problems. Well, Penny is
anything but boring. She is a mess. Her head is something like a radar dish as she constantly whips it around to absorb EVERY little detail of the world around her - especially when she's sleepy (which is also when she'll slap her leg to keep from falling asleep). She loves to play rocking horse with whomever is holding her (whether they are ready or not) and has been testing her lungs at maximum volume regularly for weeks. She also likes to raise both legs and slam them into the mattress or floormat.
Repeatedly.
For an hour.
The only weird thing is a persistent refusal to roll over. She appears to have the necessary strength and coordination and can roll to either side with ease, but just won't quite go on over. My theory is that one day she is just going to stand up, turn around and lie down on her belly rather than bother with rolling.
Oh yes, recent measurements on the two: Both were 25.5" long (a couple of weeks ago). Penny is now over 17 pounds and Isaak is over 16.5 pounds. These babies have come a long way from 1lb 7oz and 1lb 11oz.
Know that we haven't forgotten about photos or videos. The last few weeks have been inordinately busy with work, doctor appointments and family emergencies. Soon though, we promise!
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This is the 200th entry on Ollie's Tale. A little over 2 years ago, Bekka
posted this. Our first, painful entry in the too-short story that was to be Ollie's life. We look forward to many more posts that are less and less about medical news and more about the little (and big) joys in our life. Bekka and I have talked about creating a new blog more focused on the twins and preserving Ollie's Tale as an archive of his struggle and the struggles of his little brother and sister as they first entered the world. We haven't made a final decision yet, but will soon. Penny and Isaak deserve their own space, I think.
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