We got some bad news about Emily yesterday. The flow rate on her cannula was increased to 6 liters / minute, and they haven’t been able to wean her off of 100 % oxygen. The doctors have said that if she gets to the point where she would require a CPAP, they are going to send her to CHOP (the children’s hospital) and have a trache put in and put her on a ventilator. If this doesn’t happen, the best we can hope for is that she stays in the intensive care nursery at P Hospital for many more months until they can wean her flow rate down to 1 liter/minute or less. In any event, she will likely be on oxygen for several years after she is released.
Tony
I’m so sorry to hear she’s having a rough time. I remember when a trach was first mentioned in regards to my daughter and I was petrified of the idea. Although it’s difficult having a ventilator dependent baby, it’s also wonderful to see my daughter no longer struggling to breathe. In the long run I have to say it’s been the best decision we made.
I pray that Emily’s little lungs will start to heal. And don’t be too worried about the oxygen. They thought my daughter would need oxygen for possibly as long as 3yrs and here she is not even 3mos home from the hospital and she’s already done with it during the day time. When they finally start growing new lung tissue you start to notice all kinds of improvements.
If you ever want to read through some of the struggles that we went through with my daughter her blog is at dakota-rose.livejournal.com and she was trached on July 11th of this year.
Please know that there are prayers going up for Emily from our household.
~Emily
I am sorry to see Em’s setback, and am praying her O2 needs go down on their own and she doesnt need the Trach
Catherine
Tony, Jennifer, and Emily,
We are so sorry to hear that Emily is having such a hard time breathing. We’re all praying for you over here, hoping that Emily’s flow can be weaned. This would be the best Christmas present I could imagine.
Abby, Sharon and Hallie
I hope you don’t mind that I post a comment, but I found your daughter’s site through another preemies blog some time ago. I have been praying for your little Emily for many weeks and I am so very sorry to hear that she is having another difficult time. Your family is in my prayers every evening and I pray for the Lord to give Emily strength and healing.
My daughter Alissa was a former 24 weeker she had to have a trach because a small airway from scar tissue. She is now almost 3 and we have been trach free 1 year. The trach is a scarey thing but with Alissa it made a great differace she got to go off the vent within days of getting it. There is a hosp Cincinatti Cholderns in ohio who has the best ent in the world Dr Robin Cototn if Emily needs to move i reccamend them Ent pulmnary wnad gi work together to get the best care for the child they are the ariodigestive team they may have a naswer for Emily that dont require a trach i wish i would have found tehm for Alissa sooner. There is also a website that has tons of info about trach plus a great meease board the site is
http://www.tracheostomy.com
mandi peck
http://www.caringbridge.org/visit/alissa
I’m so sorry to hear about Emily’s setback. She’s defided the odds to this point and I pray she will do it again with this hurdle. Take care of yourselves and know you are all prayed for. Rowena
Hi,
I am so sorry to hear you guys get news like that. I will be saying lots of prayers for Emily. She is looking very lovely today and those big eyes are amazing!
Hugs,
Susan
I am so sorry for the set-back. Please note that we are fervently praying for Emily and the two of you. I am so sorry that Emily cannot spend her first Christmas at home and I know how disappointing that is for you. Just praying that you guys are able to somehow experience the joy and grace from our Lord’s birthday in NICU together. Also praying that you guys are comforted by our Lord as you miss Christopher and Alex this Christmas as well.
Hugs,
Sonia