Happy Birthday to Ella’s Daddy!

Ella was up every hour again last night. We seem to be having a problem with her retching. She will be fast asleep and then she just starts retching. I can’t imagine being fast asleep and waking up with a feeling of nausea. So although I am worn out each night, I just feel bad for the Bun. I get out of bed and try to console her and help her get past it.

The docs keep saying that it is just normal and the nissen should stretch out in 4-6 weeks. I understand that it is normal for her to retch, but to wake up from deep sleep and retch throughout the night? I don’t buy that explanation.

During the day, Ella seemed happy and was smiling for me. It is so good to see that from her.

The sildenafil was decreased again today. I think they are testing to see if they can discontinue the sildenafil completely over the next few days.

I am convinced that the sildenafil is still playing a part in her overall care. Today for the first time, her saturations were lower overall throughout the day. The only time they were 99-100 was when she was fast asleep. Otherwise, they seem to fluctuate between 92-96. This is not a bad saturation, but I wanted the docs to know that this is a marked difference from a few days ago. Up to this point, her heart has been racing faster but her saturations have not been lower. Plus, her breaths per minute were also high today, even 60-70 bpm when she was sleeping!

When the docs checked in later, they agreed that maybe the sildenafil is still having a positive impact on her. They want to watch her overnight and might end up adjusting the dosage back upward. Along with me, they were noting that her saturation and heart rate were all over the place. Sometimes the variable saturations can be a sign of pulmonary hypertension, so they want to watch it carefully.

Discharge from the hospital is being discussed for Wednesday. At this point, we really want it to be Wednesday because we are not only getting tired of living at the hospital, but we have so much to do to prepare for the move. We need to be home. But, the worst is knowing that we don’t feel that great about where Ella is at these days. They are still trying to figure out the combination of meds that is most optimal for her. And even tonight, she is breathing fast, her heart rate is high and she doesn’t seem that great. The hard part is that before, we could just dry her out and leave her in a dried state; it kept her happy and clinically looking well. Yet ever since we went off the major diurectics, and added other meds like Captopril, it has gained her a lot in some areas but now we have just created new issues.

Ella is scheduled for a follow-up swallow study tomorrow. This should give a better idea of what Ella can and cannot eat by mouth. We’re interested to see if the results are the same or different than the last study, which was completed before her most recent surgery. The results should help us when we initiate therapy sessions in the coming weeks.

Please pray that Ella’s increased heart rate will come into a more acceptable range and that her retching will be minimized. We hope that she will sleep well tonight so that we can catch up on our zzzs too.

Thank you for faithfully joining us in our journey.

Galatians 6:2 (NIV)
Carry each other’s burdens, and in this way you will fulfill the law of Christ.