Hayley went to the kidney doctor today. He told her that the Wegeners disease was no longer found in her blood.  Previous he said that it was in remission.  That meant it was there but dormant. Today it is completely gone.  I guess that is very unusual for an auto immune to be completely gone.  We are very grateful.  So far Leslie has passed the tests she has taken to qualify for donation.

Lots To Hope For

Hayley was accepted to Mayo to test for possible kidney transplant.  She is a great candidate.  The first Mayo doctor looked at Hayley and her chart and knew immediately that she had Wegeners.  Where was he all these years???  He was so encouraging for her future.

Annalyn, Hayley's younger sister has been testing to donate her kidney.  It has been trying as she has had to leave school and come over for about 30 different tests.  She failed one test and they wanted to retest her.  Meanwhile mom started feeling like Annalyn may not be the one the Lord intended to donate.  Jace, her brother has been persistent in wanting to donate as well as many others.  It is a sweet act of charity to offer. (The doctors want someone very close to her age or younger for best results) but non-the-less Hayley prayed and was told that there was someone else.  Leslie, a cousin meanwhile had a dream and saw herself in the hospital having just donated her kidney to Hayley.  Mom called her a couple weeks ago and asked her if she was ready just in case.  She said "I have been waiting for you to call.  I know I am the one to do this.  I have just been keeping Hayley's kidney warm for her".

Today we got word that the retest Annalyn did last week was one point away from acceptance.  She got an 89 the first time and 90 the second.  She has to have a 91 to pass.  There is nothing wrong with her just that at this time she needs both her kidneys to achieve maximum function.

We are now looking for Leslie to go through the many tests.  What a sweet sacrifice.  Meanwhile Hayley is doing 3 to 4 dialysis treatments a day.  She is working and staying active.  She still hopes for a miracle of recovery but is willing to be healed through a transplant.

When I took Hayley to the Doctor last week he looked at her last lab results and then with much emotion said to me, "Why doesn't she have any iron?"  I sheepishly said "I don't know".  He obviously was upset.  They dripped 2 bags of iron into her in the hospital but the concern is growing as to why she is not retaining it. But at least they let her leave the hospital.  We were grateful for that.

She is to see a GI doctor to see if he can figure out what is wrong.  We also start the training in dialysis this week and will have 4 long days of information and doctor appointments and training at Mayo next week.   Mayo sent us an agenda with every minute accounted for.  They may not be so anxious to get started when they learn that she has no iron.  Just a thought.

Life if good and Hayley knows she will be normal and healthy and well some day soon.

The surgery went well and Hayley is in recovery. We are hoping she will be able to come home tonight but won't know till late tonight.  She will now be able to begin dialysis at home in the next 2 weeks.  She is going into Mayo just after Thanksgiving to start the long process for transplant.  She and her mom will do 4 long days of training and appointments to make the preparations.  We will then search for any volunteers for a donated kidney that fit the right criteria.  As always Hayley is in good spirits, a little discouraged because she was hoping she would not have to go through this. She knows she will live a normal healthy life and have a family and that gets her through.

Surgery tomorrow

Hayley was admitted to the hospital again this morning.  Her kidney functing is dropping very low.  She needs to start dialisis soon.  She will have surgery tomorrow morning to put a "port" (not sure what it is called it may be a cathedar) into her stomach that will enable her to do at home dialisis.  The surgery is not long.  If she does well she can come home tomorrow night.  Hayley will need to continue dialisis from here on out until she gets a kidney transplant.

Hayley's kidney function is at 10 percent.  Mayo Clinic just called and said they are going to set her up for a transplant.  We have spent 1000.s of dollars on trying to get the kidneys to kick in and heal but the function is not improving.  One doctor said that the kidneys have improved but the brain is not sending the message for the kidneys to kick in. 

When Hayley was born, the doctor used a suction device to help her be born and we believe it harmed the pituitary gland in the brain.  This is the place that Wegener's disease originates according to some experts.  So we are not sure what else to do at this point except go with the transplant.  We know that the brain can heal but there is not a lot of knowledge about it.

Hayley continues to have a great attitude about all that she is going through.

The doctor has given Hayley a break from everything for the time being.  He is waiting for an insurance to come through for her so that he can do a kidney transplant.  Hayley is trying and praying like crazy to keep the kidneys she has.

Her last kidney function test was at 16 percent and that is up from 13 percent.  Her other levels are slowly improving but aren't sure if it is enough to keep the doctor at bay.

We received a call that notified us that Hayley qualified for the chemo drug to be donated.  Our sweet Rituxin.  It is $25,000.00 a bag and Hayley received 4 bags.  Since we don't have insurance that was a great blessing.  They also discounted the hospital bill down to almost nothing in comparison to the cost.  We have been very blessed in many ways.

Thanks again for your prayers and for your continued prayers for her kidneys to heal.