Thursday, August 30, 2007

Day 2: Broviac, Bye to Dad and Late Night Cereal

We were worried last night that things this morning would go very slowly and John would be NPO for hours on end while waiting on the surgery schedule to accommodate him. Thankfully that wasn't the case. As soon as he was awake we were headed down to have doppler studies done on his veins to find a place for the line and by the time the studies were done the OR tech was there to take us to pre-op. Ever his charming self John made lots of new friends in the pre-op and came out with a new teddy bear friend too.

John's broviac central line (plastic catheter inserted into heart, comes out through chest wall to hook up with IV nutrition) went in without any problems, and then the scope that was done showed that his stomach doesn't clear it's contents very well. I guess we sorta kinda knew that but still, it was rather interesting to see the pictures. Although his intestines are rather dilated it didn't appear to the GI doc that there were any other issues, like ulcers or such. Of course since John had been knocked out and had stuff run down his throat he woke up crabby and with a sore throat, go figure.

We had to say good-bye to dad in the OR recovery room and then headed back to John's room to cuddle and read books for the rest of the afternoon. He did play nicely with the physical therapist for a bit and was a real sweety to the nurses when they brought him medicine, which he thinks is a treat. He managed to eat a few bites of supper and is at this time sitting next to me, eating cereal, a bit of Rice Krispies and a bit of Cheerios.

I got a few minutes to talk to the nurse coordinator today about feeds, tpn, lipids - whether we were going to be doing the old Omega 6 lipids that are so terribly hard on little livers or the new Omega 3 lipids that aren't, and before it was over we ended up making each other cry. We came to the same place, that we are both scared and worried about this line and realizing that it really is the only option right now because John is in her words "wasting away before our very eyes." As silly as it sounds, and maybe just as female as it sounds, it makes me a bit less scared to know that they are scared of this step too, somehow it makes me even more aware that we have made the right decision. In the end she decided to run tpn tonight and address lipids again tomorrow, we'll see what the day brings.

The child development specialist came by today and visited while John was sleeping in my lap, and then later stopped in for a moment when he was awake. She was impressed with all that I told her John could do, but when she came back she kind of tested him and then she was way impressed that he was so quick and fast to learn things. Another fan! She was also telling me about the therapy services that are available once John becomes an outpatient, and it sounds like we have a few choices, outpatient clinics here, a pediatric rehab type establishment that covers all of it, and registering John with the Omaha public schools and letting them run the show. We've not decided what we are going to do, for now it's not an issue and the lady is going to get us more info on each option. When it comes down too it, we may very well opt for a lot of playing, reading books, going to the zoo and just being a kid for this year. With living in Ronald MacDonald House, frequent hospitalizations and only getting to see dad every other week that is a lot to deal with.

Tomorrow is yet another day of testing, a VCUG and mag test, both kidney tests to find out how much kidney function he has and how much reflux he has in his ureters. Last night they did a cath test where they cathed John to find out how much urine was left in his bladder after he wet his diaper, and granted it was probably a half hour or maybe a little longer between him actively wetting his diaper and them coming to cath him but still 400ml seems like a lot. The urologists are waiting for the results of these further tests and then are formulating a plan.

The weekend should be rather quiet, and uneventful. For the moment they are running stool studies to rule out any infectious junk so John is on isolation and not allowed out of his room. This will not be fun when he is up and feeling good and ready to run tomorrow, but hopefully they will get the tests done quickly and either treat a real problem or let the kid run. Of course that means that I have to figure out how to keep up with him with an IV pole, if nothing else it will be cheap entertainment for all onlookers :)

Thanks again for your prayers and support, the emails, phone calls and getting to chat online and such are a real sanity saver for us. For the moment we are specifically praying that God will keep this little plastic catheter in John's heart clean and him infection free until he is big enough to have it pulled out, but as always we pray Thy will be done and commend our precious boy into Christ's loving hands.

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