Sunday, September 30, 2007

Wes is still here in the hospital. Again I feel complete confidence in Wes care here at Children's Memorial. He a spinal meylogram Wed showed the success of his neurosurgery last month. NO leak!!!! Even with this information, Dr. Bowman has stayed very involved in Wes' care.
Unfortunately due to his prior C-diff infection, g-tube surgery was postponed until Friday. Wednesday and Thursday brought high fevers, which resulted in his surgery again being postponed. Yesterday his pediatrician here, Dr. Shah, told us that Wes has a very serious blood infection. At this point no specific name, only referred to as a gram negative bacteria. Initially Dr. Shah and Dr. Bowman felt there could have been contamination, b/c this is so serious and unusual. Yesterday afternoon was very scary as Wes began vomiting that was alarming to his nurse and doctors.
Today Wes has shown some signs of improvement, lower fevers and no vomiting. His second culture results today did confirm a gram negative bacteria. This morning because of the vomiting and gagging, Wes pulled his feeding tube up some. X-rays showed that it is still in his stomach, which is to his benefit. He has been taking very little by mouth for many days now. At this point we do not know when his g-tube surgery will be schedule. With this infection he will need at least 10 days of IV antibiotic treatment. Today Dr. Bowman told us how important it is for Wes to be here with this infection.
Due to me making reservations with the wrong Ronald McDonald House, Joey is homeless and floating between waiting room cots and the chair bed in Wes room, when his nurse allows two parents to stay in his room. At least we have been fortunate enough to be isolated in a private "suite". Wes' first few days, his nurses and doctors come in with the full yellow suits, which oddly enough Wes seemed to think was funny.
There is a point in the hospital when you really begin to break down with each issue weighing down heavier. Beginning so far away from our boys, family, and friends also adds to this difficult journey.
I know Wes webpage reaches many wonderful people. I would like to request that you all pray for Mr. Charles Creamer, and his family. His daughter Marie Lee is close friend of mine and their family is faced with some very difficult decisions after a very lengthy battle in the hospital with several lung infections.
Love to everyone!

Sunday, September 23, 2007

Wes is such a busy little guy. He is all boy! After his surgery and returning home, he is back to full speed. He has dealt with some issues, but has not slowed down. His sleep apnea has come back full strength. Dr. Curry feels the best option at this point for Wes is a g-tube, which will help with food irritating his airway and help Wes gain some much needed weight before his palate surgery. (Here is link with pictures and explanation of g -tubes
He is scheduled for g-tube for Wed Sept 26th in Chicago. Yes, back to Chicago! Dr. Bowman wants Wes back for scans and where all doctors involved are aware of his neurosurgery and airway issues. His surgery site is actually visible through his palate.
The antibiotics he had post op in the hospital caused an intestinal infection, C-Diff. This has caused horrible diaper rash and put us on alert for side affects. It can also cause this surgery to be postponed. Dr. Bowman has arranged for Wes to have surgery with the head of the pediatric surgery department, Dr. Reynolds. She does require that Wes have a clear culture before proceeding with surgery. Last week this infection appeared to be resolving with Flagyl, but today this does not seem to be the case. Friday the local hospital sent out a culture that will not be back until Monday. Joey and I are suppose to fly out Tuesday. Wes will be in the hospital for a few days following surgery and in Chicago one week post op to learn how to care for and change the g-tube.