Home

We're home. Jordan was very excited. All he had done at the hospital was sit in the wagon and stand briefly holding onto the chair, but when he got home he was determined to get back to his crazy self and wanted to climb and get into things. He was frustrated when he realized how difficult it was since he is so weak. Everyone was very joyous and it was extremely chaotic as a whole carload of stuff was unloaded and dumped downstairs. Next came the 8 boxes of medical supplies and when I realized Jordan wanted to move around and Brent couldn't lift him very well, I was completely overwhelmed. Just getting all his medical supplies set up took me a couple hours. We are extremely glad to be home and hoping things will get easier as we get in the swing of things and Brent gets back to himself. This Christmas we are so thankful for our family and friends. I don't know what we'd do without you. No words can express how much your love and selfless care for us has meant. We are forever grateful.

Sunday

We are still here at Children's. It seems to go on and on. Jordan is getting better, but has had so many issues they are being very cautious about releasing him. I'm not getting too excited about leaving tomorrow, but it is a possibility. Brent is recovering well. He is stubborn about taking pain medicine and is hobbling along a little. We were quite a sight strolling through the halls, Jordan in the wagon with all his tubes and lines and Brent being pushed in the wheelchair. Someone said you should take a picture to remember this holiday season. I won't need a picture to remember and I think I'd rather forget. Thanks to all who have visited called and sent your good wishes. The stuffed animal count is up to 24 for just this hospital stay ( that includes 10 elmos that sit at the end of the bed)

Surgery

The surgery went fine and Brent is feeling much better. He has to stay the night at the hospital and should get to come home tomorrow.

Please Pray

Brent went into Northwest Hospital this morning with stomach cramping. They did a CT scan and found that he has appendicitis. He is having surgery this afternoon. I'm not sure even what to say except for to please pray for him. Jordan is doing better. He will probably be discharged on Monday.

3 Out

The goal has been met and exceeded. 3 tubes have been removed, two to go, and we'll go home with three. Still not sure when we will be out, but we're getting closer.

Wanting Out

Jordan continues to feel better, but we still have to be here. I want to go home so bad I can barely stand it, but we are dealing with 8 tubes and 3 antibiotics as well as geting his system used to tube feeds again. Everytime one of the six medical teams (urology, surgery, oncology, pain service, interventional radiology and infectious disease) comes to see us I bombard them with questions about tubes,fluid levels, days on antibiotics, etc. I am on a mission to get at least one tube removed in the next 24 hours. I am afraid when we do go home, it is going to require full time nursing care from me, for which I think I deserve some sort of degree. Anyways, we're here just hanging out.

Please pray for Jordan's cousin Ben who arrives today for the surgery to remove his tumor. He should be just down the hall from us on the surgery floor.

Feeling a Little Better

Jordan is doing better. He still has a ways to go but it is good to see him smile again.

No Fevers

No fevers for 12 hours so we are hopeful we are heading in the right direction

Saturday evening

Jordan just got back to his room after more surgical procedures to remove infected fluid buildup in his body. Two new tubes were added and one was removed. I don't really know much about this guantlet of medical procedures Jordan has endured, but I do know Jesus. Honestly, turning over our little guy to the expertise and wisdom of different doctors has been a difficult thing for me; especially when I don't know them or their various qualifications. Knowing that the Great Physician is ever present and always in the operating room has been a resolving and reassuring thought. We are praisworthy that the likely source of fevers has been discovered and now taken care of (we will have more certainty in the next day or so as fevers decrease). Additionally, we are grateful for so many hospital workers lovingly and diligently caring for Jordan. Please continue to pray for God's healing power to rest over Jordan this evening and for evermore.

CT Results

They did a CT scan this evening and have found the likely reason for the fevers; there is an abcess in the pelvic area from the the second surgery. It means another procedure tomorrow under anesthetic and another tube, but at this point we are anxious to get it done and have the fevers be gone. This has got to be the end.

Things I Will Never Take for Granted

Watching my daughter's musical theatre performance, going to the kids' school Christmas party, chasing Jordan around, pulling him out of the dishwasher, sleeping in my bed, sleep, a sweet little blond head of hair, going to church as a family, putting up the Christmas tree, a tubeless tummy, a regular bath, going out with my husband, good news, and a day without fear.

It has been a very, very difficult 2 1/2 weeks. It is starting to feel like we are never going home.

fevers persisting

We believe we will be able to see God's answer to prayer soon, but in the inbetween Jordan's fevers have continued. Though a another surgical procedure was done yesterday, in an attempt to drain fluid and reduce his persistant fevers, those fevers have not gone away and the doctors remain baffled. Jordan's heart rate has also remained high. We are grateful to God for the great news concerning his clear/clean "margins" and we know He will respond to this present need for healing.
Jesus said: "Abide in Me" John 15:4

Negative Margins

We were very happy to hear today that the pathology reports showed all negative margins. It is very bittersweet news as much has been sacraficed. We are moving forward and desperately anticipating the day we can say it is the End of the End. Jordan's fevers continue and they found some fluid near his liver in an ultrasound today. They think it could be the source of the fevers and will be placing a drain this afternoon. It is another unpleasant procedure for Jordan but will hopefully put an end to the fevers and any infection going on.

Day #15

I was told I misrepresented Jordan's condition by saying he did a "dance." What I meant was he waved his hands to the music. He actually has been very sendentary, but brighter. He has started ordering everyone to take off their coats and sit when they arrive and has enjoyed playing with all his new toys. We have a long way to go still as he continues to have off and on fevers, still many tubes and has yet to get out of bed. We are on day #15 and are anxious to be out of here.

Coming Back

Jordan seems to be turning a corner. He is still having some fevers but not as high and they seem to be coming down. He has actually given us a few smiles and did a little dance to the Spinners "I Keep Working my Way Back to You," yesterday. The relief at seeing him "back" is indescribable. It has been 2 weeks of extreme stress, exhaustion and worry, but we are hoping things are looking up. The new motto in our family is "Hawaii '09. It couldn't come soon enough.

update

Please pray for relief from Jordan's fever, elevated heart rate and discomfort. We are hoping for some calmer waters today, as things have not gone so well for his recovery from second surgery.

Friday Dec. 7th

Jordan has had a rough rebound from this last surgery. We are hopeful that today things will pick up for him and turn in his favor. We are back to 10 different tubes draining, filtering, feeding, comforting, etc. So much has been done to his little body, he simply is exhausted. Presently, he is resting well and watching another episode of Elmo. Thanks for continued support and prayers.

surgery over

Jordan has just now come back to the room and did very well in surgery and recovery. Thanks for many prayers which made this a successful surgery. Though doctors have expressed their optimism, we will know more about the margins when pathology reports come back in several days.
Pray that no more cancer will be detected!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Exodus 15:26 "I am the LORD God who heals you"

Surgery #2

After lots of discussions with surgeons and oncologists, they have decided to go ahead with the second surgery tomorrow. It was very last minute news for us but we are anxious to move forward and get it over with. Please pray for him and the success of the surgery. It will be at 1:00 and probably about about 3-5 hours..

day 6 of recovery

Jordan is continually improving each day and we should be down to 6 tubes by the end of the day; hoping to leave here with only 2-3 tubes to work with. We anticipate going home in the next few days. His favorite hospital event is to be pulled through the halls of the third floor in his wagon and visit a couple of the Christmas music displays...it got me fired up to watch him delight in such a simple activity; especially in light of his significant medical struggles. Speaking of Christmas, I was able to join the kids on the homefront and we put the tree up and strung some lights. It was a big thrill for the kids and it wouldn't have happened if not for the blessing of friends dropping off a beautiful noble fir... what an exciting surprise! Becky continues to be a great inspiration to me as she endures the roller coaster of uncertainty and information that comes our way. Pray that we will navigate this holiday time with patience and understanding for one another. Again, we appreciate all that so many others have done in consideration of the busby family. You are loved! brent & becky