Tests, Tests, and More Tests

Day 1 in the hospital was mainly just hanging out and getting vitals etc., as we did not get checked in until late afternoon.

Day 2 the doctor’s performed an ultrasound/echo of Bug’s heart, to make sure that everything looked good there. After that came back clear we were basically going to be discharged, as they did not know what was going on, however on the back end our doctor was advocating for them to do more chest x-rays in order to see the hazy spot that they had originally seen the day before. Once the x-rays came back it was determined that she would get a CT and potentially and MRI the following day, since she had been eating all day and they would have to put her under sedation, they had to wait. Given that her Jay-Are has a history of pulmonary AVM’s (Arteriovenous Malformations https://en.wikipedia.org/wiki/Arteriovenous_malformation) which are a result of HHT (Hereditary hemorrhagic telangiectasia https://en.wikipedia.org/wiki/Hereditary_hemorrhagic_telangiectasia ), we knew what we were looking for. The hazy area that was showing up on Bug’s lung was most likely the result of a pulmonary AVM, however the only way for us to know for sure was to do all of the tests. If the CT did come back positive for a pulmonary AVM, then the next step would be the MRI in order to check for AVM’s in her brain and liver, hence the need to put her under sedation.

Always such a happy girl!

Day 3 we were scheduled for a CT and potential MRI at 5pm. The bad part about this was that bug was not able to eat all day as they were going to put her under sedation for the procedures. After a long day of waiting and a very cranky, but for the most part distracted little girl (thank you playroom!), the CT happened as planned. This for mom and dad was by far the hardest thing that we have ever had to do. They had us hold her while they were putting her to sleep via her IV, and when she went limp in my arms all I could do was start to cry. Once the CT came back as positive for pulmonary AVM’s the next step was that they were going to do the MRI to rule out any AVM’s in her brain or liver which are the other 2 most common places that AVM’s form. 2 hours later and more than a few tears from mom and dad, luckily everything came back clear from the MRI, and there were no additional AVM’s in other areas of her body.

Ready to go home!

Day 4 meant results, and with them tons of new doctors to talk to. We talked to in the span of a few hours a cardiologist, geneticist, and regular pediatrician. After many conversations and more than a little bit of information, our next steps for the most part was follow up appointments. This meant us going to see the geneticist as well as setting up an appointment to have Bug’s pulmonary AVM’s taken care of. So after 4 days in the hospital, and finally some answers, we were ready to go home!