Ups, Downs, and Changes

You may remember that I mentioned that Evie would be having an angiogram today, February 1st. Francis and I have decided to cancel the procedure. We have been in contact with the cardiac team at Texas Childrens Hospital for a second opinion, and specifically with Dr. Keila Lopez (you are awesome and so helpful!). After talking with her at length, we decided to cancel the angiogram for two main reasons.

The first is that Evie's anatomy is so unique that she does not have a specific syndrome; rather she has three main problems, the combination of which is rare and something that cardiologists only see once in awhile. Hers is not a common problem with a well-documented solution.

Keila and her team feel that Evie's best chance is to see a doctor who specializes in her issues, specifically her MAPCAs (Major Aortic Pulmonary Collateral Arteries - the web of vessels that Evie's body created to compensate for her lack of a pulmonary artery). This doctor would be Dr. Rome at Childrens Hosptial of Phildelphia.

The other concern is uncertainty (on our part) over exactly what the next step should be. One plan was to balloon open the blood vessels that go to Evie's lungs in a hope to increase blood flow. But since she does not have a pulmonary artery, these small vessels are all she has. If something goes wrong during the procedue, or if the results are not optimal, there is no going back. What's done would be irreversible and Evie could end up worse off than she is right now. It would be better for her procedure to be done, if it should be done at all, by Dr. Rome.

So we are seeking yet another opinion, and will hopefully be in contact with Dr. Rome soon.

Moving on to Gavin, who had a tough day Friday...

He had not pooped for 72 hours (I am sure someday he will just love me for writing about this) and he was uncomfortable, so I called his doctor and she said to give him a suppository. Luckily, it worked fairly quickly! He had a low fever in the morning, but I gave him Tylenol and he was acting happier after the suppository did its job.

Then after his nap he had a fever of 105, so we went to the doctor's office. He has a sore throat, and at the time we were not sure if he may have had a UTI also (given his history). The doc taped a urine collection bag to him, so the pee would go in the bag and not his diaper. She gave me a sterile cup and a test strip with 10 different colored squares on it. When he had some pee, I had to pour it from the bag into the cup, dip the strip in, wait 60 seconds, and see if the squares changed color. If so, that could indicate infection.

Luckily, nothing changed color, so there was no UTI! If this sounds crazy and complicated to you, remember that this was the alternative to a trip to the ER, where a nurse would stick a catheter in Gavin, with no sedation, to collect urine. And also remember, I am going to be a NICU nurse someday so I consider this part of my pre-nursing-school training!

Gavin got an antibiotic and by Saturday was feeling much better, playing and jabbering with Evie and Nana & Grandpa Cermak.