Jax went 6 weeks without a central line and didn't gain more than a few grams. Even increasing his calories didn't put weight on the poor boy. So the decision was made to put a line back in and start back on TPN. I am actually okay with this decision. We gave it a great shot but simply put, his body (bowels specifically) are just not ready to absorb the calories he needs. Amazingly he didn't lose any weight but just couldn't put any on. So he is close, soooo close to being line free, just not quite yet. People have asked, "can't we just feed him more?" The answer is no. He already takes way more calories than a normal baby but if your body is not absorbing 100% than it doesn't matter if you eat butter tub after butter tub. You will not gain the weight you need. TPN goes through the veins, not digestive system so his bowels don't have to absorb it, he is basically forced to absorb.
Moving on.....Friday, April 20th found us back at Primary Children's. Neil had a business trip to Austin, TX so we dropped him at the airport and headed to the hospital for what we thought would be a quick in and out trip. Wrong.
Carter was very excited to be back at the hospital. Probably the only kid there who was excited to be there! We always have to stop in front of the pond and Carter empties my coin purse for me.We had a few minutes to spare so we headed to Carter's favorite section of the hospital. The play area. Usually Jackson isn't with us when we come here but he had a great time as well.
Look at my big boy standing on his own playing the life size piano. 1 month until he turns 1. I can't believe it.
Carter probably played with every single toy in the room. He loves it here.Then up to Radiology where the plan was to put another PICC line in Jax's right arm. It was already established that his left arm had no access left but we were hoping his right arm had one last accessible vein.
The appt started with the sweet nurse trying to place an IV in his right hand. She couldn't get it. Because of the million IV's he's had placed, he is not an easy poke. After 2 tries she called for help. A wonderful IV Therapist came and placed one on her first try.New Rule: No nurses get to try their hand on Jackson's veins. From now on I will request IV Team. The nurses can place IV's on regular kids. Not my baby anymore.
You would think it would get easier as you have to hold your baby down as they dig around in his veins while he is screaming bloody murder. It doesn't. It might actually get a bit harder, remembering all the other times you've had to hold him down while his big eyes are pleading with you to stop and pick him up.
What a tough guy he is though. This is him after 2 failed IV placements and 1 successful placement. And also not having eaten for 7 hours at this point. I gave him his binky and his blanket and he rolled over and slept for an hour in the bed as we waited for the doctor.All in all he went 17 hours without eating one single thing. He rarely cried. He required constant distractions to keep him mind off food but what a blessing that he was able to tolerate not eating for that long.
And bless Carter's little heart. He has been through so much himself as he is dragged from one appt to another. He has his moments of course but for the most part he is so patient and flexible. He loves playing the IPAD.The PICC placement was unsuccessful so we were left with one option. A Broviac. Same concept as a PICC line but you use the main veins in their neck/shoulder area. The bad part of this is that he has to go to the operating room and be under general anesthesia. They make an incision in his little neck and tunnel the line down and bring it out just around the heart area.
The bandage on his neck is temporary until the incision heals. The tape over his chest is the sterile dressing we change once a week.
It actually looks worse than it is. He was a little sore at first but now it doesn't bother him at all. He was (finally) circumcised and that actually caused him more discomfort than the broviac. I felt horrible about that but hope he will thank me later. :)So he's back on TPN 3 nights a week and we hope to bulk him up a bit and then try weaning him down again in a few months. Of course we're disappointed that we had to come back to this, but I'd rather he be healthy and fat. And happy!
