June 27, 2019
The past six months have been mostly wonderful with a few setbacks. Dottie is growing and so healthy with her HPEN (home parenteral and enteral nutrition). We just had a check-up with out GI team yesterday and she looks healthy, she's growing at a great consistent pace, she's just over 32" tall. Dottie's G-tube still runs 20 hours a day and she gets 12 mL of formula per hour. Her PN (parenteral nutrition) runs 15 hours per day.
At the end of January Dottie had a slight skin infection around her G-tube sight and was given some antibiotics. Unfortunately, she was not able to tolerate these oral antibiotics and got very sick. She didn't want to eat or drink her formula and she craved water like we had never seen before. After talking with pharmacists, doctors, and nurses we heard from our GI team to stop the antibiotics! Her labs the following week showed very high sodium and she ended up in the hospital for about 24 hours to monitor bringing those levels down. Dottie still has not recovered the ground lost during this time. She had been up to 17 mL per hour of formula through her G-tube and they had just dropped her to 14 hours PN. She was also eating 5 mL of purees and 5 Gerber puffs each day and drinking 180 mL of formula orally. Since then the days vary drastically if she wants to eat or drink anything at all or how much. The past few days have shown a positive increase in her desire to eat which is wonderful.
In March and April Dottie had two fevers (over 100.5) that took us to the ED. The first time Seth was supposed to leave with a group of people from the church for a trip to Mexico. When her first set of labs came back showing a positive culture (blood infection or line infection) we decided he should stay with us. This was her first line infection and we didn't know what would come while in the hospital. She also had cold symptoms so we were confined to just her room, no walking around or going to the play rooms- this made the days even longer and more difficult.
Labs must show 48 hours with no positive cultures before she can leave the hospital so we were there about 5 days. We might have been able to leave the day before but it takes time to organize things with our home health care company for home IV antibiotics. This was a good case scenario, with only one positive culture the antibiotics they put Dottie on began working immediately and the infection was taken care of immediately. If the infection continued to show up for multiple days, they might have had to remove her central line (this would mean surgery) and place a new line. Thankfully Dottie was able to keep her central line!
Exactly three weeks after leaving the hospital we were back in the ED with another fever. This time her first culture came back positive as well, another line infection, ah! Both of the infections were from gut bacteria, though different kinds each time. It is impossible to know for sure if the bacteria was introduced into the bloodstream externally through central line contamination, or internally, gut overflow you might say. It's very likely that because of her extreme short gut that they happened internally.
Our most recent trip fell over Easter weekend. One of our wonderful NICU receptionists saw we were in the hospital and brought over a sweet Easter sign for Dottie. Dale and Liz brought Dottie an Easter basket full of plastic eggs and some goodies from Sean and Dawn. My mom Mary brought us a homemade Easter dinner. We continue to be grateful for all the support we have, especially during those longer hospital stays. Once again Dottie only had one positive culture and we only stayed 5 days! She was able to keep her same central line and we have not been back in the ED since, praise Jesus.
Those are a few updates from the past six months. Overall Dottie continues to thrive and grow. She learns new things everyday. She is repeating more and more words, or at least trying. There are still certain sounds that elude her but we know she will pick them up when she is ready. Dottie will get to see and Occupational Therapist next month whom we hope will help her with eating/swallowing foods that are not pureed. As of now she tends to choke a bit when given small bites of foods, can't quite figure out how to get them down.
Thank you for your continued prayers. We love you.
~Megan, Seth, and Dottie