The surgeon decided that it was time for the contrast study. Yippy! Unfortunately, the order was put in after noon and the Radiology department was already full. Next step would be this morning, but Radiology didn't want to do it this weekend. That leaves us with Monday, and we're ok with that. So until then we are clamping Caleigh's g-button for 4 hrs and then leaving it open to gravity for 4 hrs. This helps drain out the stomach acid that isn't going down. She is still stooling well and doesn't get so upset when she is 'doing the deed' like she used to. We changed Caleigh's Methadone dose to go into her g-button and she should be off of it by Tuesday. Caleigh's two seizure medicines are now going through her CVL because we finally pulled the triple lumen central line that was in her femoral artery. She had started favoring that leg and not wanting to move it much. Plus it was a big infection risk. We are really excited that it is gone and Caleigh seems more comfortable without it. Even kicking her left leg a lot more today.
Here it is. A trophy of sorts. A lot of short gut parents take the old central lines and put them in baby dolls so that the kids have a doll like them. Kinda like American Girl....with a twist! So the triple lumen name comes from the three lines. The very top tip (it's blue) at the end of the cream tube was actually in Caleigh's heart. Hard to believe.....The cream tube is threaded through an artery up to the heart. So the central line that Caleigh has in her chest is very similar, but with just one lumen.
On to the annoying...... and my ever building need to vent. Ever since we had our little chat with the charge nurse about what clean practices we were expecting; things have slowly gone down hill. Eric and I don't get any sleep because we are constantly having to 'police' the nurses & respiratory therapists as to what we are expecting of them. We've stopped medicine mishaps, heparin overdoses, reminding them to wear gloves, etc., etc. The other night Eric woke up to a lab tech about to stick Caleigh for blood work. Caleigh doesn't get stuck with any needles unless she is really sick and they need access. That's one of the fabulous things about having a central line; you can get blood anytime without a stick. We were very angry about this. The night before last, we still had the triple lumen in Caleigh's leg. We told the nurse that we were using that line for medicines. I woke up at 2am and she was giving the medicines through her chest central line. Fine, whatever, but the medicines aren't compatible with her TPN & Lipids. This can cause serious problems. They have the nursing degree, why should we tell them how to do their job! I was pissed and couldn't sleep the rest of the night. Then we have had issues with the social workers. Not so much on the floor but in the ICU. Because Caleigh has Medicaid we are eligible for transportation or meal reimbursement while inpatient. It's not a lot but adds up when your at the hospital for more than a month. We were told by the social worker in the ICU that everything had been taken care of. When we got up here to the floor we asked about it and were told it was taken care of. Long story short....it wasn't and nothing had been reported to the medicaid people. So at some point one of those many things broke the straw on the camel's back. We called the patient advocate service that the hospital has. By yesterday afternoon, we had talked to the nurse manager for our floor and expressed all of our concerns. She apologized for the inexperienced nurses, but made no excuse for the medication problems we've had. She set us up with a schedule of primary nurses (her picks) for the next 2 weeks. The social worker thing is still in the works, but things seem to be getting better. Volunteers stop by everyday to see if I want a break, offering to sit with Caleigh. Not a chance. I'm not leaving her side and even if things were going great I just don't think I have it in me to leave. I know, I know....I'm a total control freak. I think everything that has been going on just boiled up until we popped. If it wasn't for our amazing doctors we would probably be finding a different hospital. Frustration & exhaustion are most likely to blame. We will keep dreaming about being back in our home sweet home. Sooner hopefully than later.
On a side note, I wanted everyone to pray for Carter. He is a month older than Caleigh and lives in the DFW area. I'm pretty sure Carter and Caleigh will be comparing scars very soon! About 2 weeks before Caleigh's surgery, Carter had a Multi-Visceral Transplant in Boston. Carter is no longer a short gut baby! TPN free! He has done amazingly well and looks great. Just recently he has started having some trouble and they are still trying to find out what is going on. They are all the way in Boston, far from home with unanswered questions. Please pray for little Carter, his family & his doctors.