February 12, 2018
We had a meeting today with our team of doctors. This was an opportunity to touch base and hear from each person their view of what’s to come in regards to Dorothy’s care and progress toward going home.
At this time Dorothy’s “ins and outs” continue to be monitored. Everything that comes out (urine, poop, vomit) is tracked and her TPN nutrition is changed, if needed, to compensate for excessive loss. Dorothy still has a drain from her g-tube. Her intake and outgo must be stable, with no drain, before we can think of going home, and the ultimate goal is to take her home. Currently she receives 5 ml of milk every three hours and her drain is closed four hours out of six. The next step is to close the drain five hours out of six. If she tolerates that then the drain will be closed all the time with chances to drain every 6 hours. Once she is stable with the drain closed all the time and is pooping regularly then the GI (gastroenterologist) doctor and her team will begin working with Dottie.
This is the team that will really begin the work in preparing her to actually go home. They will need to figure out her TPN and food (most likely broken down food through the G-tube). Again, she will need to be stable with her “ins and outs” balancing and her electrolytes being stable. This process can vary in time depending completely on Dottie and how her body responds.
Once Dottie is looking like she will be able to go home the surgeon will come back to put in a Hickman line and take out the PICC line. A Hickman line is a central line (same as the PICC). In simple terms, a PICC line goes into the skin and enters a vein, whereas a Hickman line is tunneled. The line goes into the skin and along the skin (creating a tunnel) then enters the vein. This is better because the tissue will actually heal around the line creating a more secure line. This will make it stronger at the entrance and therefore harder to pull out, as well as a lower risk of infection.
Affer Dottie is stable and ready to go home and the Hickman line is placed, we will get trained on how to take care if her. We will spend time with her outside if the NICU in either the pediatric or gastroenterology areas of the hospital. There will be nurses around to train us and help us but we will have a little more freedom to take care of her ourselves with less supervision (the NICU had one nurse for two babies, they are always close by). As this time gets closer we will figure out all our home health needs and supplies.
We will continue to update you as things progress with Dottie. We only know this broad outline right now and as details happen we will share them with you.