Cleft Surgery is Done

Hello all...

The cleft surgery was last week and so far so good. It was about a seven hour surgery. Dr. Losee was not happy with the nose but was happy with the lip. He is a bit of a perfectionist...we love him and his group. We knew that this would not be the optimal repair as Caleb couldn't wear his mouthpiece after he coded at Duke and was on the ventilator for so long. He looks cute and very different!! We were actually only in the hospital for three days which is very odd for us. Usually we are there for the long stays. Hopefully those long stays will become a thing of the past. So he is still pretty swollen so as soon as the swelling goes down along with the black eyes I will post some pics.

So we still only have 1 nurse for five days a week, she is awesome. Not to happy with the nursing company still as we are qualified for 16 hours of nursing care a day for 7 days a week and they have had 3 months now to staff this case. We have had two nurses not even show up for their shift, one nurse who did not tell the truth about her qualifications, and another nurse who made a med error. So needless to say I would not recommend this nursing company. I would totally drop them and switch to another company but I don't want Caleb to lose the nurse he has now.

There are many of you who continually send wipes, diapers, etc. to our home. I wanted to give a little tidbit of information as I know many moms who read this are big into which companies help those who have children with special needs. I had posted that a certain company was going to donate hand sanitizer to Caleb. . .well they pulled there donation off the table. However, I did find another company that is willing to send something. If you ever need hand sanitizer and can buy Avant please do so. They were very willing to help out. Yes it may be a one time shipment but they still sent something, which is more than I can say for other companies. It is very disappointing when you call many well-known companies who would probably not be financially burdened by a donation that are not willing to donate to such a case. It seems to me, from our experience (i.e. Windcore, Panhandle Restoration and Cleaning, Jamison Carpeting, Cavi-Wipes, and you all) that the littler companies and individuals, who will bear a financial burden, are more willing to donate. Excuse my rant, but it just seems like something is wrong with that picture.

So it was a year ago we were arriving in Durham, NC to get Caleb a thymus transplant. It was not too long after we got there, May 10th 2007, that Caleb got sick and coded and was placed in the PICU on ventilator. I remember mothers day last year. . .my first mothers day and I was praying that Caleb would make it and we would have many more mothers days together. I remember all the other moms in the PICU waiting room that were spending their first mothers day the same way I was. I think of you all and your little ones often and you continue to be in my prayers. May this mothers day be a better one for us all!

In case I cannot get another opportunity to get back on in awhile. . . I wish everyone a Happy Mothers Day.

God Bless you all!!

God Bless Caleb!!