Thursday March 15, 2018
Journal entry by Megan Halligan — Mar 16, 2018
Thursday March 15, 2018
Tomorrow marks day 75 in the hospital, Dottie’s 76th day of life. She has been doing very well the past two weeks.
After getting her her central line on March 5 she healed very well, spending the rest of the week in the NICU. On Friday the 9th Dottie was moved from the NICU to the pediatric floor. This was a big move because it meant she no longer needed intensive care. For the first time Seth and I began taking on nearly full care of our daughter. She was taken off her monitors and only hooked up for checks every 4 hours or so. We have had our own private room with a single bed so one of us could stay the night. Be have been giving her Lovenox shots twice a day (for the blood clots) and changing her TPN lines. It’s very important to be extra cautious, work with a partner, and double check each other during line changes.
Her 1 ml continuous feeds (into the stomach) were restarted but she began emesis after just 12 hours and was stopped. Our GI doctor said this is was normal after having been under anesthesia for surgery the previous Monday. On Monday March 12 Dottie had a another barium contrast study of her bowels and that showed things are still moving correctly. A day after the study we began by giving her 5 mL of milk by mouth (enteral, into the stomach) twice a day. After two days her 1 ml continuous feeds were started back up into her G-tube and she has been doing great handling these.
This week our GI team has also figured out that Dottie can get all her nutritional needs met in 20 hours of TPN and therefore can be “unhooked” for four hours each day. This will give us some freedom each day for us to take her out without bringing along the TPN and as she gets older and is moving more she will have that time to move around freely herself. This was a huge step for us and very exciting.
Tomorrow, Friday March 16, Day 75 at OHSU Doernbecher, we will be taking our daughter home!! We will continue to work with the GI team, staying in constant contact about how Dottie is doing. We will work together as we increase the amount of milk she takes through her G-tube. This will be a very long process as we push her bowels to work. She may have lots of emesis during this time and we are assured by the surgeons and the GI team that this is fine and we will push through it and monitor it carefully.
We we will also be overly careful about Dottie getting sick. Anytime she gets a fever there is a risk for line infection. This means an automatic trip to Doernbecher and a minimal 48 hour stay to check for line infection. She will still catch colds and get sick like all kids but each time will be a test for her bowels and how well they can handle the added secretions her body makes during sickness (what our bodies do naturally).
All this his means that although we will be excited to have visitors at home (which will be Dale and Liz’s home for awhile) we are going to more more careful than someone might usual be. We will be asking that anyone with cold symptoms (or has had them for 48 hours) stay away. There will be lots of hand washing and hand sanitizer. Also, if we don’t allow you to hold Dottie please don’t take it personally, we just want her to have the beat chances of being healthy. And we will be asking that when you do visit and are around her you keep your face (and germs) away from her face (sorry, no sweet baby face snuggles/kisses).
So, unless something comes up with Dottie on Friday, or some kind of supplies aren’t ready, we will be going to Monmouth. We are excited to get into the routines of a more normal life.
Thank you all for your extraordinary care of us during this time. We could not have made it through without God’s care and your constant prayers and love. We continue to receive financial support through ELIC and will remain on home assignment with them for the next year, receiving our health insurance through them and paying down our deficit from leaving Lhasa and moving to Mongolia. We love you all and will use this site in the future for updates in Dorothy.