April 16th 2017

Happy First Easter Arlyn! We are spending our day at Galasano Childrens hospital. This week has been trying. Arlyn started with a cold last weekend and it quickly escalated to a barking cough with mucus and spiting up by Wednesday. On thursday I noticed her vomiting was worse and by Friday Arlyn was vomiting 50% or more of what she was being feed either by mouth or through her NG tube it really didn't seem to matter. On friday Scott and I has ran out to by food and while in the grocery store Arlyn vomited a large amount. At this point I was done we called the primary care doctor and went in to be seen 10 min later. After talking to Dr Wilson about what my concerns were, ( decrease in wet diapers and not as good of a "Lasix Diaper" as normal, vomiting and inability to quantify but believe about 50% or more of her feedings and her increased lethargy) we were advised the safest bet was to go to strong hospital. Arlyn never had a fever although while spot checking her temperature there were border line temp like 99.8 with elevated HR 170s and Resp Rate 50s.

Scott and I decided it was better to get Arlyn checked although this time it was a bit different because Christian and Luke were at home so Scott stayed back. Mommy and Arlyn went to the hospital on Friday and were admitted with suspected Right Upper Lobe PNA and dehydration. We settled into 8 North, room 10 with Grandma Tic Tac in toe. Arlyn at this point was eating 25 to 30 by bottle but continued to vomit so was switched over to continuous breast milk only tube feeding for gut rest. She revived IVF for 12 hours to catch her up and started on Ceftriaxone for PNA. After 36 hours no growth on her culture made the team feel like it may have just been atalactisis (fluid) on her chest X-ray, she had gotten 2 doses of her antibiotic and overall looked better. Her HR had come down to 140s-150s and her oxygenation was better 99-100 vs the initial 88-92 when we first came in. We restarted lasix and now are at a point that we want to assure Arlyn will tolerate feeding when we go home.

The plan for today is to restart fortification and maintain the continuous feeding until this evening. then we will try to start bottle feeding like we wood at home to see if she tolerates it. We may be able to go home late in the day today or tomorrow. Although it feels like we are loosing progress we really have just hit a snag in the road. Cardiology explains that with cardiac surgery patients the common cold can even tip her over the edge. We cannot keep her away from everything but the first year is going to be challenging. Although I think it already is…