Monday, September 27, 2010


On Monday we had a port placed in Harris' chest.  We came to this decision gradually and jointly with our care team.  I am a big believer in looking at the entire picture when deciding what type of medical care is appropriate at any given time.  I believe this is true in all aspects of health care, not just hemophilia.

We considered a lot of different factors before settling on the port.  Among other things...

1. Harris' body has the ability to get him to places that his mind doesn't know to warn him about... there's a fair amount of scaling of tables and surfing on rocking chairs at our house.  Plus, with three older siblings there's a lot of keeping up to do... and that can be hard on the joints.
2. His "rubber ball" veins (ie- good veins that bounce around when you try to stick 'em).  This makes for a very sweaty, hold-the-hemo/wrestlemania extravaganza, where I usually end up laying across my baby attempting to distract him with his favorite food source, (me), while he screams his bloody head off.
3. The potential for turning out bitter siblings who tell their therapists all about how their mom made them wait for hours in the hospital waiting room with a baggie of brownish apples, some stale pretzels, and the choice to either watch the waiting room movie and like it, or watch the waiting room movie and not like it.
4. To this girl, self-reliance is always better than dependence... even though we will miss seeing our nurses on a weekly basis.  We really love them and they have become like members of our family.

After discussing the risks of the port, (infection, migration (another word for moving around), out growing it, clotting (are you kidding me?)), and the surgery (punctured lung - rareish, bleeding into the heart and chest cavity- really rare, oozing (another word for bleeding) - pretty common)  we decided to go ahead.

The surgery was short, maybe 30 minutes and we got to go back into recovery with him while he was still coming out of the anesthesia.  He didn't have any problems with the meds, but he was "a wild man" while leaving their influence, so the recovery nurse asked us to come be with him.  I think the mark of an excellent care provider is knowing their limitations.  I am sure that J. is an amazing recovery nurse, but she is not my baby's mom, and she realized that "mom" is what he needed.  I have so much respect for doctors and nurses who ask for help when they need it, or say "I don't know" when they don't.  They are really the ones I trust the most.

Our recovery has been surprisingly smooth.  I expected Harris to be in a lot of pain, but with the help of appropriate medications, he was up and walking (sort of) and climbing (sort of) the same day and was off everything except Tylenol by the end of day 1.

We went in for post op on day 4 and he looked "the best that we have ever seen".  Hardly any bruising, no oozing and the incision looks immaculate.

We are glad we made this decision and are keeping our fingers crossed that all goes smoothly from here on out.

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