Update: Yesterday, Dana had a fever. No problems with her recent surgeries, trach and g-tube placement. She has had no breathing problems lately. But yesterday until today, she has fever, but she is more calm today. Her heart rate is still elevated though as high as 230 when agitated and 170’s when calm. The elevation of her heart rate maybe due to fever and an infection she may have. They have already sent blood, urine and stool cultures. The cultures came out Negative (thank God) on her viral panel and her stool (tested for C. Diff). But her guiac test did come out postive, so they will start treating for any infection on GI tract.
Don’t get me wrong, I am still thankful that she is in a better state than before but it still breaks my heart when I see her sick. When I was at work, she was playing with her dad and he actually carried her, but I guess I won’t be able to for a while again just to give her rest. I wish my heart just would turn into stone so I won’t feel anything. No matter what I do, I just don’t get numb. We were on our way to meeting our goal of getting her off from her sedation meds then this infection slows us down. I take a deep breath and shed a tear to blow the heaviness in my heart.
She has to be off from her feeding to give her belly a rest. She was having diarrhea too. She will be back to TPN and IV lipids for a week then start feeding again. She will be on IV antibiotics, meds will be shifted to IV from oral to make sure her belly rests. Well, except from her orals meds for Pulmonary Hypertension. Her liver enzymes has been good still so far. They will still continue to wean her off her sedation drips, the last two on the least dose. Tomorrow, she will be off from it so I pray that she tolerates well.
She also is still small for her age. They will continue to work on her nutrition as the Dietician has talked to us. Their last program for her was continous feed of 22cal per hour. But then again, it will be shifted to IV as they will put her in TPN and IV lipids. Niel and I ate very excited of her being chunky again. Dana has always had those cute chubby cheeks but it would be nicer if her body gets chunky as well.
We are still very thankful. When she cries, her vent doesn’t alarm much anymore. And Niel and I are now starting our trach classes because in the long run, we will be the ones changing and taking care of her trach. We started changing her ties yesterday. Eventually, we (together) will change her trach on a regular basis.
We are still praying for the best. It has gotten us this far. We pray that her infection will be resolved. And that, she will be able to feed well and be healthy. For today, we pray that she be comfortable that her heart rate will slow down a little.
It is still a roller coaster side. One day she’s ok, the next day we are helping her out on something. She starts to smile though, execpt today that she is feverish. We will be with her in her baby steps to recovery. Tomorrow, we will be talking to her spine surgeon about plans for her scoliosis.
We keep on praying for her and for us, her parents. Thank you everyone for praying with us. We have a great and good God.