Allison received her repair surgery today. She did very well. The doctors say the next three days are critical in her recovery, but it should be uphill from there. Unfortunately she did have to receive the invasive form of the surgery, so recovery time will be a bit longer and she will have a scar across her lower left chest. But no big deal - she can finally work on getting better now!
The hole in her diaphragm turned out to be much larger than they expected, so they had to use a gore-tex patch to do the repair. They also said her esophagus muscle looks very thin, so there is a chance she will need reflux repair in the future. Also, 30% of CDH repairs develop re-herniation and a second repair is required. So basically, there are no guarantees for us... as usual, but she is definitely on track now.
Her vitals stayed perfect through surgery and the hours following. Now we are just waiting and hoping that stays the same for the next few days. After that, it is all up to her. They want to see her lungs start functioning without the ventilator and they want to see her able to eat on her own before she comes home. They are unable to give us a time frame because every baby is different. They also told us that it is likely she will come home on a nasal cannula for oxygen for sometime, but eventually she should be able to live a perfectly normal life without any kind of support.
Please continue to keep her in your thoughts and prayers these next few days. I will update again if we receive any new news or big changes take place.
You are so beautiful baby Allison. You are loved by your Auntie Jauharallah, Uncle Casey and your cousins Kaylee and Uriah. Keep fighting, we all can't wait to hold you and kiss you.
ReplyDeletei've stayed familiar with your and baby alli's story through bbc and your blog and it brings tears of joy to know she's doing so well! my baby girl also has a left cdh and is due at the end of may.. so your story hits close to home. i pray she continues to just get better and better and you guys get to come very soon (a day that i know is greatly anticipated)! take care
ReplyDelete