Thank you for visiting. Braydon was diagnosed with Craniosynostosis at his 2 month check-up. I hope that reading his story, it will help out another family going through a similar situation. Also Ethan was diagnosed with Craniosynostosis at 1 week old.

Tuesday, July 7, 2015

On the Other Side (Again)

I know it's been awhile and I didn't post an update during Lauren's surgery, but everything went as smoothly as it could.  Surgery took a little bit longer than it did for the boys, but I'm glad they took their time with my baby.  She ended up with a blood transfusion, but so did her brothers.

The first night went surprisingly well in PICU.  The next day some coaches from the Virginia baseball team stopped by for a visit.  The pitching coach promised to get the boys a ball if we ended up attending a game.  Coach Karl came through on his promise as my dad was able to talk to him before the 1st championship game.  The Cavaliers lost that game but came back and won the 2nd two games to win the championship.

We got moved to the 5th floor that day as well.  Things started to decline, the swelling got worse and she stopped eating.  She was on morphine every 2-3 hours and we had a hard time keeping her comfortable.  This went on for a couple of days.  We were able to get her off the morphine on day 3 but she still wasn't eating.  So we needed to stay another night.  Later that day we finally got her to eat and the swelling started to go down.  I walked around with her and was finally able to nurse her as well.  We were able to go home on day 5.

Her brothers were very excited to have her home.  Things have been going well at home as well.  During my time off, we were able to go to the zoo a couple of times and went swimming with family as well.  She had her 2 week post op checkup and everything is on target.

We received back the results from Lauren's genetic testing that they did here locally.  And it turns out that Lauren has a duplication of the 12q15 or MDM2 gene.  While it's never been linked to craniosynostosis, we might have found the missing link.  The geneticist wasn't sure if she could get approval to run the same test on the rest of us, but since we were part of a genetic study, she thought they might be able to look at it.  We will follow up with genetics at our next clinic appointment.

I did call our pediatrician to see if he thought this could also be the cause in her issues with height and weight growth, but he wasn't concerned.  It was very nice of him to call after hours and offered to be a sounding board whenever I needed him.  It's very reassuring to have found such an awesome doctor who has done nothing best for our three munchkins.  It's not easy when one of your children have an issue, but when all three do it's nice to have a support system.  Hopefully we are closer to having an answer on how this happened.

If you are a family who is going through diagnosis, please follow me on Twitter (ebueltel81) or find me on Facebook (Erin Bueltel).  I hope that our journey could bring you some comfort.

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