The systems

The following are affected: Brain, heart, lungs, liver, kidney/bladder, stomach/intestines, blood,  and endocrine. I'll start with the minor ones and I think do a single post on each of the major issues.

Heart - Tomas was born with 3 holes in his heart. An open PDA and a VSD and ASD. The PDA closed on its own when he was around 4 months old, the VSD closed much later; but again - on its own. The ASD was open, then closed, then open, then closed, then open again. This last go round the doctor finally said he doesn't think it ever closed, but that it is so small it doesn't always show up on the echos. It requires no intervention and no medical precautions, and he only needs an echo for it once a year. He also has a right conduction delay which may or may not be from the ASD, or may or may not be from his metabolic disorder. All in all his heart was strong from the beginning and has remained so.

Lungs - He has chronic lung disease and various parts of his lungs are usually in some degree of collapse. Sounds terrible but he has learned to adapt and with the help of his vest therapy and meds manages along pretty darned well. He still gets pneumonia 2-3 times a year, and in February needed O2 support for the first time in months, but honestly on the whole his lungs are so much more stable than they were for the first 2 years. The only remaining scary issue is that when he gets sick, really sick, his lungs don't compensate anymore and he can crash hard on me, and scare the pants off whoever is around at the time. He was admitted in June for a nasty UTI which started as a fever spike. Because of his central line protocol I have to take him in to ER with any temp over 100.4. That day it hit 102.5. I decided to drive in, thinking I had enough time to get there, but was wrong. By the time I was about 5 mins out he started retching, his skin became that awful mottled shade of gray, and he had the rigors. We had immediate triage, assement, and then the director of the ER came in (after the ER docs went and got him). He said that Tomas looked like he was in septic shock and began talking about moving him to ICU and possibly intubating him. His breathing was that terrible. However, the ER team was awesome and had the IV antibiotics up and running in about 45 mins, not long by ER standards at all, and within an hour Tomas was sitting up and responsive. Point of the story being his lungs just don't keep up when he is really ill. (And from now on mommy will be taking the ambulance into the hospital)

Kidney/Bladder - He has had a few UTIs before this last one, and intermittently has hydronephrosis (a swelling of the kidneys due to fluid build up). Because he got so sick from this last UTI nephrology was brought back on board. They were brought on during infancy, he was dismissed, brought back on about a year ago, he was dismissed, but now they are here to stay. Tomas has some white spots in his kidneys that are not stones, but either crystals (kind of pre-stones) or scar tissue. He needs to be bladder/kidney infection free for 3 months in order to have a nuclear scan done on his kidneys to find out which. So, in the meantime he is on a prophylactic antibiotic and is taking sodium acetate to help keep his bi-carbs up and reduce the likelyhood of any new crystals.

Those 3 systems sort of fade in and out of play, or rather weave around other issues going on. The reason I would classify them as minor issues is that they don't really effect the day to day health or routine, and pretty much only become an issue during illness.