More

There seems to always be more, doesn't there?

Last Wednesday night, Izzy and I sat in the waiting room of the psychologist's office while Phin was  in with his therapist. We were just sitting. Taking selfies, but simply sitting.

For half an hour we had been sitting. Then Izzy started to act weird, got sweaty, heart racing, short of breath, feeling weird all over. She asked for the oxygen to be turned up to 3L, yet she still looked purple  and complained of shortness of breath. She was asking me to take her home because she felt so bad. She didn't care if we left Phin at the office. She looked so miserable. When I felt her chest, it felt like the ground as a horse gallops across. I was petrified and so was she. The episode lasted about 15-20 minutes and is believed to be a longer run of SVT. Scared me to death watching her. Izzy was just as scared as me.

Izzy didn't make it to school on Thursday. Thankfully, she did make it to school on Friday for her last day of second grade.

Last Friday evening as we were heading out of town for end school year/father's day fun, Izzy's cardiologist called. Dr. Cutler indicated that she had talked to Dr. Doshi (pulmonology) and they feel like Izzy needs four imaging tests to rule out issues that may be able to be fixed. She feels very strongly that Izzy's current breathlessness is not coming from Izzy's heart nor is it caused by pulmonary hypertension. She even consulted with the head echocardiogram doctor at the Mott and he agreed that the pictures he saw do not look like Izzy should be suffering as she is now.

Dr. Cutler wants to look at Izzy's lungs to see if there is some fibrosis causing a problem and to see if the blood flow is not reaching the air sacs, making perfusion a problem. She also wants to look at the pericardium (sac around the heart) to determine if it is thickening/stiffening. She is hopeful that we may be able to find a way to get Izzy off of oxygen during the day through these imaging tests. We reluctantly agreed to allow it, stressing that we do not want to put Izzy through more testing if there is no hope of actually changing anything. Dr. Cutler feels that there is a chance things will improve for Izzy, so we can't say no.

Dr. Cutler also told us that she reached out to the Mott echo doc about Izzy's conduit and how it is plastered to Izzy's sternum. He had never seen anything like it before either. As such, he did not know what effect that could have on Izzy's overall health. The one thing the docs could agree on is that any surgery to attempt to fix the conduit would be extremely high risk. The surgeons would have to put Izzy on bypass through her legs before even attempting to cut through her chest (which typically takes many, many hours because of all the scar tissue from three prior open chest surgeries).

Even less invasive surgeries are dangerous at this point for Izzy with her desatting (oxygen concentration lowering), so anything with anesthesia is out. Needless to say, the imaging Dr. Cutler is requesting does not involve anesthesia.

Finally, Dr. Cutler was concerned about the SVT episode Izzy had on Wednesday night, but once again confirmed that she was going to do nothing to treat it. We are to wait until the next time before she will consider treatment.

Thankfully, we had a great weekend away to not think about imaging, cardiologists, nor pulmonologists.

Now, we are waiting to hear from Dr. Cutler's office about the imaging tests. I was told to expect them to call Monday, but have heard nothing yet.

Thank you for keeping up with our girl.

Mel

PS
If you wanted an "I ate ice cream for Izzy" shirt, you must order ASAP. The sale closes on Thursday, June 23. If you don't order by then, you will miss out!