For the past week, Brent has been having trouble with his dialysis catheter.  It has not been flowing well and is getting clogged easily.  So early this morning he had to go into a dialysis access center (who knew that these places actually existed?) to get his catheter removed and a new catheter placed.  He will have to use this for about another month until his fistula is ready to be used. 

We are leaving Sunday morning for Disneyworld for a week -- Brent is all set up to have dialysis in Orlando on Monday, Wednesday and Friday.  The kids are beside themselves and we are pretty excited, too.  Please pray for endurance and no medical complications while we are away.  We will definitely post some pictures when we get back.

I read this yesterday from 1 Peter 1 and it encouraged my soul:  "Praise be the the God and Father of our Lord Jesus Christ!  In his great mercy he has given us new birth into a living hope through the resurrection of Jeus Christ from the dead, and into an inheritance that can never perish, spoil or fade....In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials.  these have come so that your faith .. may be proved genuine and may result in praise, glory and honor when Jesus Chris is revealed."

We have  had a great week.  We were able to travel for the first time since Brent got sick in the fall -- we went to visit his parents in Williamsburg.  We also went to see my family for Easter.  Overall, Brent's energy level is increasing, but he still days that he feels very tired.

Yesterday was Brent's birthday -- we had a great celebration with a Mickey Mouse cake in anticipation for our trip to Disneyworld on Sunday.  He also started the training for at home dialysis.  He will be training for at least 4 weeks, and he learned yesterday how to set up the machine and will start learning today about the error codes on the machine. 

Everyday that he goes in for dialysis, they weigh him and then take off as much fluid as he has put on.  When he drinks a lot, they have to take off a lot of fluid, and this makes him feel tired, weak, and crampy for the rest of the day.  It is recommended that Brent only drinks 1 liter of fluid a day.  This means about 8 ounces at each meal and 1 1/2 glasses beyond that.  So Brent is going through the day feeling thirsty all the time, but unable to drink without repercussions. So when our pastor at our Good Friday service spoke on Jesus saying, "I'm thirsty" while on the cross, we listened up.  He said that Jesus was certainly physically thirsty at this point, but even more that Jesus was spiritually thirsty.  And we were reminded of Jesus' own words when he said, "Whoever drinks the water I give him will never thirst.  Indeed, the water I give him will become in him a spring of water welling up to eternal life." 

Please continue to pray for us and pray that we would thirst after Jesus.

Dialysis Training

Brent had his fistula placed on Thursday.  Dr. Cull at GBMC made a small incision in his forearm and connected the vein to the artery so the vein can develop thicker walls and tolerate the high flow rate needed for dialysis.  This takes 6 to 8 weeks to develop so until then, they will still use the tube in his chest for dialysis.  While Brent has this in place, he cannot get it wet.....so he has to be very careful with showering and no going in pools.  Dr. Cull did a great job, and we were very happy with him.  If we had waited to go through Hopkins for this, we wouldn't have surgery scheduled until late May.

Brent has felt pretty good for most of the week.  His energy level is continuing to improve.  He walked to school with us a couple times this week.  He did go into work one day to talk to his boss and they are so understanding and wonderful.  They really set his mind at ease about being out this long.  He isn't schedule now to go back to work until the end of May when he finishes his at home dialysis training.  This training will start on April 25 (Brent's birthday!) and continue on for 4 or more weeks.  During this time he learns to hook himself up to the dialysis machine, run the controls, make dialysate, follow his blood pressures, take blood samples and centrifuge them.  He also has to learn how to stick the fistula to hook himself up to the machine.  We are planning on having a whole supply cabinet for the materials. They also require a lazy boy because you have to recline while getting dialysis. 

We are trying to put weight on Brent....he has lost about 20 pounds since first being diagnosed with aHUS in the fall.   Unfortunately, we have to follow a very strict low phosphorus diet, so that means no dairy, beans, nuts, chocolate, whole grains. 

Here are some prayer requests: 
For Brent to put weight on
Increased energy
Good control of blood pressure
All details to come together for our trip to Disneyland (May 1 - May 8)  Brent is getting set up for outpatient dialysis in Orlando on Monday, Wednesday and Friday
Patience dealing with all the paperwork and insurance and social security (Brent gets to go on social securtity since he is on dialysis)

Weekend Update

We have so much to be thankful for this weekend:

Brent has progressively felt better throughout the week and has finished his first week of dialysis.

Signs of spring are popping up all over and my girls and I are excitedly pointing them out to each other as we walk to school.

I got to gather with my neighbors to pray for my family and for another neighbor who is bravely battling cancer.

The children are spending the weekend with my parents and Brent and I are getting a weekend of rest and retreat.

Brent has an appointment for surgery this Thursday to have his fistula placed.

Our family has begun to prepare ourselves for the celebration of Easter.

Brent had outpatient dialysis for the first time yesterday.  He will be having this Monday, Wednesday and Friday for the next several weeks until he starts the training for home dialysis.  Since home from the hospital, he has had days where he has felt fairly good, fairly bad, days he has felt tired and in pain and nauseated.  My natural tendency is to let my mood be affected by how he is feeling that hour.  But I was challenged by the sermon at church over the weekend on idols.  My pastor said an idol is "anything we look to for our sense of well being other than Almighty God.  When I look to how Brent is feeling for my sense of well-being, then that becomes an idol to me.

One day over the weekend, I was feeling discouraged and then read this from one of my devotionals:  "Do not yield to discouragement no matter how severely stressed or surrounded by problems you may be....  Flee every symptom of the deadly foe of discouragement as you would run from a snake.  Never be slow to turn your back on it, unless you desire to eat the dust of bitter defeat.  Search for specific promises of God, saying aloud of each one, "this promise is mine." 

So that is what we did.  After the kids were asleep, we went through different scripture and picked out promises that God has given us and we said, this promise is ours!"  There is power in believing God is who He says He is!

Brent got home from the hospital again yesterday at dinnertime.  He had three days of dialysis in a row and afterward was feeling much better.  I have people ask me what I think about Brent starting dialysis and on one hand it has been hard because I really believed that God would heal him before needing dialysis.  On the other hand, though, Brent was feeling so completely horrible before he started dialysis, I am just so thankful that there was something we could do to make him feel better. 

Our next few week are going to be really busy.  Brent will start going to an outpatient center at Greenspring for dialysis on Mondays, Wednesdays and Fridays for two weeks.  He is soon getting a fistula put in his arm for long term dialysis (right now he has a temporary tube coming out of his chest).  Starting in two weeks, Brent is going to start the training to do hemodialysis at home.  He has to go to the training center 5 days a week for 4 - 5 hours a day to be trained to give himself dialysis, draw blood, hook himself up, run the machine, etc.    This training takes about 4 weeks. 

Please continue to pray.  Brent is not feeling well this morning.  He usually feels good for a couple hours a day.  Some of his lab values are pretty out of whack, and the doctors are sure that the aHUS is still "smoldering" -- not nearly as bad as last fall, but still causing problems throughout his body.  A transplant is out of the question until it goes completely into a remission.  We just had a doctor yesterday tell us that aHUS is a very difficult disease to treat and manage.

 We thank you for your prayers  -- we know that God works miracles in the impossible situations.