Update on Finn:
It's been a very busy and crazy past couple of days and I haven't really had the time to go into detail but now I do!
Feeding: Finn still has his ND tube so nothing is going into his stomach, it's bypassing that and going straight into his intestines. This was done because when we tried to feed him orally, he kept getting sick and it was bc his gut was just too weak from not eating for so long. Once the ND tube was confirmed in the correct place, we began slowly feeding him formula through that, a formula called Pregestimil that is low in fat and gentle. As we increased feeds, we decreased the TPN nutrition he was getting through his PICC line. As of last night, he was on full feeds and has been getting them ever since. Since it's going into his intestines and not his stomach, the feeds are continuous and it's equivalent to 4oz every 3 hours.
Throwing up: When we first began the feeds through the ND tube, Finn was throwing up about every other day and it looked like just clear saliva aka natural secretions so nothing to worry about but now that the feeds have increased, it's been more often and as of an hour ago, the fluid is hunter green in color so the team is on the way to evaluate. The tube has not shifted and is still in the correct place so the concern now is that green spit up could be a sign of concern bc he has mal rotation of his bowels but hopefully it's not and we will know soon.
Oxygen: Finn is now down to only 1 liter of oxygen and I am hoping to get him on room air soon!
Fevers: Still on and off but not as often.
X-rays: Still getting one every morning and they have been on and off but overall very good since he has had his chest tube in.
Puffiness/Diurretics: We tried no diurrel since he had the chest tube but he puffed up then we tried as needed but now we are doing it once a day. It's all about a balance since we are changing his fluid intake from PICC line to feeding orally.
Medication: He is still on the same medication however, we are adding in a new one today that will increase blood flow which in turn should increase his oxygen and give him that last boost to get on room air!
Chest Tube: This has been a battle. He has put out almost 400mls since we began feeding him. We tested it the other day to see if it's chyle and the numbers are really low so if there is chyle, it's not a lot of chyle but it's still fluid. The theory now is that hopefully this fluid will decrease as the days go on now that he is up to full feeds and his body adjusts so say a prayer! I would also like to give Finn a huge congratulations bc as of midnight he had surpassed his record for keeping in a chest tube, day 10!!!!!!! Thank you lord!
So, the plan is to start this new medication today, keep his feeds the same and hope that the fluid decreases and figure out this green spit up. I had a very long meeting with the doctors yesterday. FINN NEEDS A BREAK! So I have begged and requested that we not do any testing, surgeries or procedures this week as he has had 1 sedated surgery a week for the past 8 weeks and that's not including all the tubes, studies, tests, ultrasounds and X-rays. I said they can play around with his feeds and meds this week but NO procedures unless it's necessary. This last one, the heart cath, really did a number on him and it seems like right when he is finally having a good day, we bring him back to the OR. So I have put my foot down on that one for this week and unless he is suffering due to not having a procedure, my request is being respected.
thank you, Lord Jesus.
