Home sweet Home

Today March 27th Bentley was discharged (hopefully for the last time ever) We couldn't be happier with the results. We would still be there if it were up to the residents, because they think he should be eating "textbook" volumes which he never has. So after a difference of opinion, and the help of a great nurse and charge nurse, he was released. We really would like to thank everyone who helped out ~ it made things a lot easier. From helping with the other kids, meals, visits, prayers, thoughts, understanding and flexibility at work~ we are thankful. Your help got us through.....THANK YOU.  Bentley will have several follow ups, they say until he is 18 but should have a "normal" life and even be able to play sports if he chose to. There is a chance he will develop a hernia on the stomach, we aren't sure how likely but we will deal with it "if" it happens. ~If you ever need proof of a miracle~here he is!

Have I told you how amazing our baby is???

Bentley is out of ICU!!!!! After a bad day and harder night~he did it....Bentley had  major withdrawl's from all his narcotics~that is SO hard to watch. But today he was moved to a unit to recover fully. He also only has 2 tubes, His central IV and a ng tube. He is off oxygen and is breathing 100%. Today they started a "trickle" feed to see if his tummy could handle it and so far so good. Chris has been at the hospital  so I am home with the kids and grandma for a change of scenery but we will trade tonight, so he can get to work tomorrow. I think the news might be slow from now on, as all Bentley is working on is feeding. So here's hoping we get home soon.

March 17th

On March 17th Bentley underwent a four hour surgery to repair his omphalocle. We thought he would be going for a skin closure and start a staged muscle repair "if" the Dr thought it was possible.  Well it WAS possible......a FULL closure was done. Bentley has been in ICU since, but is doing really good. He has had a few rough momments but turns around quickly. The plan is to "try" and take out his breathing tube tomorrow and Monday moving out of the ICU to a regular floor. We are crossing our fingers. Our little boy continues to amaze the medical field and us~he is one tuff kid. We will continue to update for those of you who wonder, please keep him in your thoughts as he is not "out of the woods" yet. 

check up

 Last Sunday we were back to the hospital for another surgery. He has now had a hernia on both sides of his groin. But they are both fixed. Today we went for a check up with Dr.Wong~ he was suprizingly pleasant today!! Bentley is having his "big" surgery on March 17th. The plan is to close the skin and pull as much muscle together as possible without comprimising his heart and lungs. He will be admitted on the 16th and they said to expect to be there at least 7 days....as scary as it is We are SOOO excited to get it over with. Both sets of grandparents are coming up to help out, we are thankful for that. Keep our baby in your thoughts. Thanks.

one down

 Alright some of you know and some people are wondering so here it is. On Feb 1st  Bentley started medicine for oral thrush, but he got crankier by the minute. So the next night while we were doing his dressing change we notice A LOT of swelling in groin and left testicle, another trip to Children's. The Dr. told us he had a hydrocele(fluid) and not to worry it would be fixed in March when he had his surgery. We came home. Bentley got more grumpy and cried on and off (mostly on) for the next few days, so I called our family Dr and said I thought maybe the medicine for the thrush was giving him trouble could she call in a prescription for something else but she wouldn't without seeing him. I took him in, and she said he needed to go back to Children's....by ambulance. I asked if we could take him and she agreed "if" we could go right away. She thought the "hydrocele" was a hernia and she thought it was filled with intestine. She told me "if" she was right he would be in surgery that night or early the next morning. So we went back thinking of course the pediatric Dr would be right and our family Dr wrong, but after blood tests, an IV back in his head, urine tests and a lot of poking and prodding the surgery team came down and told us that he in fact was going to need this repaired sooner than later. They would put us on the "red list" and Bentley would be going in ASAP. The they said maybe they would repair the omphalocele at the same time.....We were SO scared, but knew we really had no options. Yesterday at 11:30 our little man, had his first surgery. They decided JUST to repair the hernia, they did a spinal so he didn't have to have a general and of course, it didn't work, so then they gave him a general anaesthetic. He did really well. They went in and pulled all the intestine back into the abdominal cavity ( it was all the way into the testicle)  POOR GUY, and then repaired the opening. Hernia fixed!!! He isn't eating real well so he had to stay over night but we have brought him home this afternoon and he seems to be coping~ so here's hoping for a smooth recovery. Next Dr's visit Monday, next surgery looks like March still.

NOT right now

Yesterday we went for another check up, DR.Wong was very impressed. Today we got a call from the hospital. Initial surgery has been booked for March 17th.  I AM NOT READY to do this...I mean I knew it was coming but,  SO soon? Yes, it is good he is doing so well, but SCARY. They told us he will be going to the ICU after surgery to be watched to make sure his heart and lungs can handle the pressure. Make sure bleeding is well controlled....and all that. Needless to say today has been filled with cuddles and worry. Hopefully as it gets closer some kid of  "peace' will find us, but for now it's a lot of stress.

quick update

So we were told Bentley had elevated IRT's(?) so they did genetics to see "if" he had CF. His genetics came back that he forsure had at least one of the two genes so today he was tested for the other one. After having to meet with the "team"  they recieved the results via fax.....negative!!! It was a waste of time to sit with their "team" but I guess. a good waste of time. On to the next hurdle.....we went and seen the surgeon, he too said Bentley looks great! We go back in a week. This little boy has had tons of prayers and well wishes, and he is truly OUR miricle.