Nephrology Appointment

- All blood work came back looking good
- Urine testing came back normal
- One kidney came back (the important one) fine in the blood work, while the other was high.
- Thyroid came back normal, except the hormone produced was low. They do not feel like this is causing any problems because it has been tested three times and for the most part been fine.
- He showed us the ultrasound and explained the cysts.
- The liver is measuring the correct size.

The kidneys are enlarged to twice the size that they should be. The cysts indicate that there is a problem, but they are not necessarily causing damage/ not needed to be taken care of. They are also not causing him any discomfort or pain.

Bentley has been diagnosed with polycystic kidney disease. We are proceeding with which form of this disease he actually has. It can either be autosomal dominant or autosomal recessive. This disease, in most cases, is hereditary and leads to eventual failure of the kidneys. If Bentley has the dominant polycystic kidney disease the failure usually doesn’t come until his 30-40s, but if he has the recessive form, than it could be at any time. Kidney failure results in having a kidney transplant.

Unfortunately, the nephrologist feels that it is the autosomal recessive polycystic kidney disease because there are no known cases in our family history and because it didn’t show up in my pregnancy ultrasound. Usually, it would have been detected there. Thankfully, I go to a Maternal, Fetal Medicine Office for my ultrasounds and they specialize in problem pregnancies, so I know that nothing was overlooked. Another rarity to Bentley’s case is that it has shown up so late. Only 11% of children with this disease are detected during the ages of 1-2.

The nephrologist thinks that this is more liver involvement than kidney. So once we have the appointment with the GI, both of the doctors will get together to figure out exactly what we need to do and what testing needs to be done. They could do a liver biopsy right now to figure this out, but it isn’t benign and would rather go the less intrusive route. I am grateful for that.

Thankfully, Bentley is not suffering from hypertension, so he does not have to have a kidney transplant right now. Because he has great blood pressure and is not showing signs of extreme kidney problems, they can only monitor him for now and figure out what testing they need to do.

We have a one month follow up appointment on April 30th. He wants to do genetic testing for Bentley and have ultrasounds on Danny and my kidneys. The ultrasound for our (Danny and me) kidneys are to make sure that one of us doesn’t have the disease, or if we do which form. This will help to figure out what Bentley has. Also, if one of us has polycystic kidneys we can pass it on to our other children. Dominant is a 1 in 2, and recessive is a 1 in 4.

Right now we are doing alright. We are trusting God and really feel like He is walking us through this for a reason. On the way home, we were discussing what a privilege it is to suffer for God. It seems weird to say it, but it causes us to love and trust God more when we suffer. He has set up everything for us: people who care for us and a God that is faithful, sovereign, and full of grace and mercy, plus has given us salvation. I won’t say that we don’t have our moments of tears and sadness, but God’s grace on us has been so abundant. We don’t want Bentley to suffer, but to live a life that he can serve and glorify God. I’m sure that it will get harder as we find out more and more, but for now we are hanging in there!

So we could use your continual prayers.
For Bentley – For healing and that his blood pressure would stay normal and not cause him to need a transplant right now.

For us – That we would have peace, trust and clarity of mind as we meet with the doctors. That we would glorify God in this trial.

For the doctors – That God would really guide them with every aspect of Bentley’s diagnosis and treatments, if any.

For the baby that we are having – That this disease wouldn’t affect their body and that they would be a healthy baby.

My ultrasound for checking out everything and to find out the gender is next Monday. If you could pray, that if anything is unusual about this baby that they would find it. Also, that if either one of us has the disease that it would show up and be healed, so that it wouldn’t be a cycle in our growing family.

Lots of prayers to a very great God!!!

We stopped by the GI office because it was right down the hall from our other appointment. Their computers have been down for the past few days so their faxes haven't been coming through. So, once they get the paperwork and review it they will schedule the appointment.