Jac had a fairly quiet day today. He had a morning visit from Dad and an evening visit from Mom. During his morning visit with Dad he started crying for no apparent reason but with Dad's calming touch he calmed back down and was fast asleep by the time Dad left. During my visit he started crying also - this time an astute nurse pointed out that perhaps he needed to have his diaper changed and man was she ever right. Once his diaper was changed (which I did with Auntie Alexis' assistance) and I had my hands on him for a bit he calmed right down and went back to sleep. This is a lesson in the fact that a preemie infant has the same most basic needs as a term infant to sleep, to be burped (well not yet on that one!), to eat and to have their diaper changed. This was a good lesson in the fact that what is upsetting him can be very simple and easy to resolve.
Now that he has his PICC line installed blood draws are not a major ordeal and the PIC line is holding so far. This line can be difficult to maintain as it is very small - his arm is strapped to a piece of cotton to keep it stable. Since he got his PIC line we have not been able to have any Skin-to-Skin time but hopefully that will come soon.
Joseph asked Dr. T about the effect of Jac's PDA on his ability to eat Momma's milk (through his feeding tube) because there had been a thought that the PDA was the reason that he had thrown up the milk. Dr. T says that he has a large PDA but that it is not casuing him a lot of problems - and is probably not related to why he did not hold down the food - the more likely explanation is that his wacky electrolyte levels are more related.
Jac's biggest challenge right now is his electrolyte levels. Electrolytes are part of the system in our blood that includes calcium and phosphorous. Jac's calcium level had been quite high but has now come down (it was 15 and is now 10) - but his phosphorous levels have remained very low. They have been giving him infusions of phosphorous since Monday but the phosphorous levels in his blood have not come up at all. They are also testing the phosphorous levels in his urine and they are quite high - showing that his body is not holding on to the phosphorous, but rather excreting it in his urine. Dr. T explained that having a low phosphorous level makes you very weak - it is like running a marathon and losing a bunch of electrolytes in the process and then not being able to replace them.
The balance of electrolytes in his blood is maintained by his kidneys and specifically by the nephrons in his kidneys. There is some very recent research showing that IUGR babies have fewer nephrons in their kidneys - and that they may have kidney problems later because of this. This has been shown quite clearly in animals but the studies in infants is still very new. The endocrinologists have gotten involved because of this problem. Dr. T is continuing to monitor his electrolyte levels and they are also going to perform an ultrasound of his kidneys to get a baseline of their size and appearance. It is possible that his kidney function is impaired because of his IUGR and this is why his kidneys are behaving this way. Dr. T says that this is all very cutting-edge, doctors are just starting to think about this and that Jac may make a good case study as they try to sort out what is going on with his electrolyte levels.
Dr. T has expressed the opinion that Jac's long-term outlook is very good for developing like a normal child - although she can't tell us how tall he will end up being. She said that he is going to be a challenging case and that he will throw us lots of curve balls along the way but that she thinks his long term prospects are very good.
Jac is still on the respirator - Dr. T would love to get him off it but she is waiting for his phosphorous level to sort itself out before seeing how he does off of it. He is getting very minimal support from the respirator - he is frequently at 21 - 23 % oxygen level, 21 % is room air.
He got a shot of caffeine today - the caffeine is supposed to help his lungs develop and improve the outcome when he does get off his respirator.
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