We left the house at 9:15 AM and walked in the door at 5:45 PM – at least we are outpatient!!! Thanks Mama for watching the kids all day – and thanks Lizzy for helping me with the O2 tank.
Today we had an echo, chest x-ray, chem 10, checked our hemoglobin, and thyroid function – and waited and waited and waited. The verdict? The diuretics have worked – they have pulled the fluid away from her lungs – yeah! Thank goodness for diuretics. Her right upper lobe also looks better. Her hemoglobin and electrolytes are normal. Her pulmonary pressures, though, not so good. Sigh. Her sildenafil has been increased. Her diuretics are going to remain the same. Her methadone is going to stay the same. The thought with the methadone is as she continues to grow, she’ll naturally wean herself. She is tolerating her feeds. I questioned that. She is vomiting at least every other feed. But the doctor said, she is gaining weight, so that is a really good sign. She is calling in pulmonology. She is going to conference with them and see if there is anything we should be doing in addition to the oxygen and the sildenafil. And we will start seeing a pulmonologist in addition of our cardiologist. There is still the risk if her pressures don’t go down or get worse of Bella going into right heart failure. But right now she is OK, so we keep moving forward and trying to treat her lungs. Time and the correct treatment is what she needs.
She did tell me that if I had been any other mother last Thursday, Bella would have been admitted to the hospital with Respiratory Distress. I was grateful that I had earned her trust that I knew how to take care of my baby.
She did ask me if Bella takes any of her food by mouth. Yes, some. She was very excited! She was thrilled that she had the energy to eat any at all. Hmmm….sounds like I need to do more research on pulmonary hypertension.
That’s today’s report. Bella has improved enough that we don’t have to go back downtown for 2 weeks – wahoo!