Run with Faith

Thank you every one who participated in the run with Faith. As you can see in the video below it was truly a success. A special thanks goes out to Faith's aunt Allison for organizing the event. Her dedication to Faith has been truly humbling.

Thank you everyone!

Much Love,

Team Pfeifer

Follow up to Kidneys

We received a phone call from CMH letting us know that it would be best if Faith would be cathed every four hours.  This would help the pressure off her bladder and it would also help all that urine going back into her kidneys.  However, they did say that her kidneys look healthy and this will hopefully keep them in good condition.  On Monday, a week ago we went to CMH to learn how to cath Faith.  It is a VERY EASY thing to do.  The whole process takes about two minutes.  She will be doing this her whole life.  Faith holds so much urine in her bladder, I'm sure she has been in pain with it.  She just doesn't have that control to be able to release it when she needs to go.  Since it's been a week we really feel like it has been helping her moods.  Yes she is still passing out, but we feel like it has been because she isn't getting her way or she is mad for some other reason. Side Note: I often think about how I want to ask Mr. & Mrs. Ezzo, the author of Baby Wise and Growing Kids God Way, What is your advice about letting your 10 month old baby have their way, if the consequents is they pass out if they don't win.-please no answers, she will be getting her way until she stops passing out or she is old enough to know what's really going on.

Kidneys

We made our way to CMH for three clinic visits all about Faith's Kidney's yesterday.  In January 2011 Faith had all three of these tests done and we found out that one of her kidney's has a slight reflux, grade 2 out of 5.  They told us not to really worry about it, that sometimes they will fix themselves.  So we did what they said and didn't even think twice about the reflux.  As I said yesterday we went and did the same three tests.  We did not speak with our kidney doctor, he is suppose to be calling us on Friday with more information.  The first study that was done was a Urodynamic/Uroflow study.  This shows how much urine Faith holds before letting it release into her diaper.  They also test her urine to see if there in any infection.  The second study was a Renal Ultrasound.  They took pictures of Faith's kidneys and bladder.  The third was a Coiding Cystogram.  This is where they take x-rays of her kidneys and bladder with urine in them, while the urine is coming out, and while the bladder is empty.  We were told yesterday that when you have a reflux in your kidney your bladder in never really empty.  Right after the last study with the x-rays that Doctor was able to tell us what he saw in the x-rays he took.  I WAS NOT NOT NOT EXPECTING WHAT HE SAID NEXT... The reflux in her right side was a 2 and is now a 5 (the worst grade) and the left side (which before had no reflux) is now a 4.  He went on to tell us a few options on what the kidney doctor might say but he also said before you repeat these options I would speak with him first.  We were about to leave the x-ray room when the first nurse who did the Urodynamic/Uroflow came back into the room holding a basket with a needle in it.  She then explained that Faith's urine had come back positive for bacteria.  Since she had so many different things done to her kidneys today that this shot of some short of antibiotic would help her.

Definition: By Mayo Clinic Staff....

Vesicoureteral (ves-ih-koe-yoo-REE-ter-ul) reflux is the abnormal flow of urine from your bladder back up the tubes (ureters) that connect your kidneys to your bladder. Normally, urine flows only down from your kidneys to your bladder.
Vesicoureteral reflux is usually diagnosed in infants and children. The disorder increases the risk of urinary tract infections, which, if left untreated, can lead to kidney damage.
Vesicoureteral reflux can be primary or secondary. Children with primary vesicoureteral reflux are born with a defect in the valve that normally prevents urine from flowing backward from the bladder into the ureters. Secondary vesicoureteral reflux is due to a urinary tract malfunction, often caused by infection.
Children may outgrow primary vesicoureteral reflux. Treatment, which includes medication or surgery, aims at preventing kidney damage.

Neuro/Pulmonary Update

Neurosurgery

We called Faiths Neurosurgeon to request an interpretation of Faith's MRI. The conversation was brief and all good news. The MRI revieled no new developments or concerns PTL! Infact, the only change they saw from the scans was that the pocket of fluid in the middle of her spine has decreased in width and increased in length. This is not a concern as long as we have not seen any loss in motor skills (which we have not). Neurosurgery said that everything looked great and they would like to see her in clinic in 6 months. They will continue to watch her as she grows.

Pulmonology

Last week we had a pulminology appointment to see if they would adjust Faith's bi-pap settings. Faith sleeps with a bi-pap at night to help her maintain good oxygen and CO2 levels while she sleeps, she has some difficulty with this. While she seemed to do well on it when we first came home, she seems to have grown out of the settings, her sleep has become wrestless and her oxygen levels keep dipping.

Durring Faith's appointment, the Pulmonologist informed us that bi-paps are not designed for infants. And in faith's case the settings are not precise enough for Faiths needs. He told us that Faith should be on a ventilator at night. Ashley and I didn't like hearing this. From the beginning we have been praying that Faith dosen't have to be on a "life support" machine. But the doctor went on to explain that in Faith's case the ventilators function would not be much diffrent than the bi-pap. It would just help her sleep more comfortably and safer. Hearing this made the idea much easier for Ashley and I to swallow.

In order to be trained to use the new piece of equipment Faith will have to be admitted to the ICU for up to two days. We are still waiting to hear back on when this appointment will be scheduled.

Fun Stuff

Tonight we attended the annual church event at Gary's Berries. We had a great time. ALL OF US! I took Faith down the slide twice. This is something I did with both of the other kids in the years past and wanted to do with Faith too. I was tenative at first, but after some coaxing from my wife and a few friends, I decided Faith had it in her. She loved it! And it was good for me too.

Enjoy