Ethan Ethan Ethan... Genetic disorder???

Ethan had another antibody (IVIG) infusion today, he did so awesome. The poor guy had 2 IVs blow but the 3rd one stuck. We also met with Rheum today and have a whole new idea for a diagnosis.... Collagen Deficiency (http://en.wikipedia.org/wiki/Connective_tissue_disease). Yeah a whole new ball game which became absolutely terrifying once I started reading. Ok, so not all diseases associated with this are scary but the one that I thought fit Ethan was (http://www.ncbi.nlm.nih.gov/books/NBK1494/). Now I could be completely wrong and I should probably stop researching. We see Nephrology and Rheum again in a month. In the meantime they did the blood draw today for the DNA testing. 

Ethan Update

All we wanted was the smallest of and answers to help with a diagnosis. I hate to ever think we have put Ethan through another surgery that was not helpful. Now that is me just being mad that the kidney biopsy did not offer something helpful. However it did tell us things he did not have which have only added to the frustration. Straight from the Nephrologists mouth... 

"1. No antibody or immune disease. Thus, nothing that we need to up his cellcept of prednisone for. This is good and we had to know this. 2. The parts of the biopsy normally affected by Alport were almost normal. I do not think we can say he does not have it based in this --partly because changes build up with time.However, even without the concern for Alport, I needed toknow that he did not need more immune medication and would have biopsied him. There is a genetic test we could send to screen his DNA for Alports as well. We could draw the blood on any of the days he is here for an infusion."

So DNA testing is what we will do and Ethan has an infusion Monday we will get the blood drawn then. Side note: Ethan has become a super hero at getting poked, really super proud of him! I have reached out to his Rheum to see if there is any additional DNA testing we can do for him end as well. Ideally that will provide some kind of answer (for crying out loud please even the smallest of answers). 

We did also hear back from Pulmonary on the bronch and Ethan does have an active bleed into his lungs and has been bleeding. They were waiting for the kidney biopsy results to determine what, if any, action to take on this. We see out primary doc, which is Rheum, on Monday after Ethan's infusion. 

Heavenly Father, watch with us over your child, and grant that he may be restored to that perfect health which it is yours alone to givem through Jesus Christ our Lord. Amen. 

Ethan Update.... Routine

Our big guy had surgery Wednesday morning for a kidney biopsy and bronch. It was so nice having Daddy here. When Ethan asked for his Daddy, as he usually does at times like this, it was awesome that Daddy was actually there. It felt so right to be supporting each other together in the same place. With all of that being on our side I was not surprised to hear the doctors say, "Ethan did really great. Everything was routine." That one word "routine" was music to my ears. As you know nothing is "routine" with Ethan. There is always something (knock on wood as he still has not been discharged as I write this). 

So medically here is the updated: The pulmonary doc saw a slight red color to the fluid in Ethan's lungs but he did not think there was an active bleed. We should hear by Friday what the results were as far as if there has been bleeding. We really do not expect anything new from the bronch. With Ethan being sedated for the kidney biopsy it was really just a good opportunity for our new pulmonary doc to see the pulmonary hemorrhage for himself. Kidney biopsy results will all be back by the middle of next week. We are first looking for confirmation that Ethan does in fact have Alports Syndrome (http://en.wikipedia.org/wiki/Alport_syndrome). There is not a whole lot they can do for him right now with this diagnose and it is unrelated to his auto-immune disease. He will continue to be followed by Nephrology to monitor this. Additionally the kidney biopsy may answer some more questions to his auto-immune disease for his primary doctor in Rheum. At this point in Ethan's care we are hoping for answers to lead us closer to a diagnosis. A diagnosis I feel gives us direction or more confidence in our current efforts. 


So today went really well. He had to stay one night to ensure he could be still following surgery due to a risk of bleeding with the biopsy. He has done awesome and I expect him to be discharged as soon as possible tomorrow morning! The 5th he has another antibody infusion and we see Rheum again.

REUNITED AND IT FEELS SO GOOD!

FEBRUARY 7, 2011 @ 1100 our family was reunited. We can finally breath that our hero is home safe. Daddy was missed terribly and his boys were thrilled to wrap their arms around him. We have adjusted nicely and are getting back into our routines. Life is so good.

Final Countdown

We are on the final countdown to our Big Daddy being home. This is so exciting and many time I am overwhelmed with emotion (the super awesome amazing kind). My outfit is picked out and our happy homecoming banner is on its way. I catch myself day dreaming about what that moment will feel like when we are all back together. Today one of my very good friends said "You did it!" and I thought, hell yeah we did it! We did it because of Mike's strength and the strength he taught our boys and our family. I am so proud of us and however silly it may sound I have to say I think we handled it with dignity, grace and most importantly with respect of the journey we chose to go on. Love that we can add this to our list of accomplishments and open the next chapter. Super cheesy post I  know but this is my blog and I can post what I want ;) xo

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Ethan Update YAY!

We met with pulmonary yesterday and Dr. Austin gave the sedation team the all clear to sedate him for the kidney biopsy, which is great. He also decided that since he will be sedated they will go ahead and do another bronch to verify the finding from the bronch in October. Still waiting to find out when this will happen but I am hoping it will work with Mike's schedule as he is coming home so soon. Ethan was very excited to see a doctor and not see any needles so it was a good appointment. The risks with the biopsy and bronch are low but he will stay overnight. I will keep everyone updated :)

Ethan Update

Ethan, Ethan, Ethan.... The kid is such a trooper. So since I last updated everyone on Ethan he has had another IVIG infusion, they found a significant amount if blood in his urine, was on "lock down" to avoid him getting sick after finding a lung infection, and he has unexplained bleeding form his anus. They think Ethan has Alport Disease which will explain the kidney problems but not everything else. Alport Disease runs on my Moms side of the family and i am a carrier for the disease. Before Daddy gets home he will have another IVIG infusion, meet with pulmonary again for a complete pulmonary workup, meet with ophthalmology, have a kidney biopsy, and chemo (Ritux) infusion. He is being super tough, back on a low dose of steroids, and no longer on lock down. He has a team of half a dozen docs at Vandy now, all of which are amazing. 

RAWR! Means, "Hey, you are AWESOME" in Dinosaur

Happy Birthday Jesus