Update

I was just Skyping with Jonny. He is suffering from poison ivy/oak, but is busy writing about his trip to Egypt and the following hospitalization. He will be adding to this, perhaps.

Dr. Visit

This morning we met with the new nephrologist in Sacramento, Dr. Keith Lau.  He was very confident in the visit that Jonny was doing great and well on his way to recovery but drew some labs to find how the kidneys were functioning.  He was not at all concerned with the level of swelling that Jonny has been experiencing as it was normal for what he has been through.  His blood pressure remains slightly elevated but it is of no concern and is expected for what he has gone through.

We received the lab results about 15minues ago and are very pleased to announce that his creatine was 1.08 which is normal.  Dr. Lau stated that the results were even better than he had anticipated.  He has lifted the renal diet stating that he should still watch his sodium intake but that everything else was okay to eat.  He also is able to stop the Tums with every meal and will just remain on the iron supplement as he is still somewhat anemic.  Dr. Lau stated that Jonny will probably continue to experience some swelling as his body continues to recover from the HUS but there is no concern with the kidneys any longer at this point.  He will draw labs in about a month to evaluate them again and if that goes well he will not need to be seen by him for approx. 6 months.

We could not have received any better news today.  Jonny is of course thrilled especially with no longer having to follow the renal diet and we are thrilled with not having to argue with him about it any more.  We just wanted to thank you all again for your continued support and prayers.  It has been a very difficult journey through all of this but it has also taught us much.  Primarily of what an amazing community that we are surrounded by.  We can not imagine going through any of this without the support of our family and community.  Words cannot express our appreciation for each and everyone of you. 

With deepest thanks,

Jonny and Laurie

Sunday

The blood pressure is up some more (140/90), but with the appointment with the doctor tomorrow, we'll need to wait on labs...unless it gets to 150/100, in which case, it would be drawn today.

Food choices continue to be limited. Its not the phospates and potassium as much as it is avoiding sodium.

We'll update this after our visit to the new doctor... Thank you for your continuing prayers.

Home

Jonny is still feeling pretty good. He is experiencing quite a bit of puffiness... especially in the morning. The main focus is on trying to find low sodium, low potassium, low phosphate foods for his new diet. He is becoming quite conversant with all this and he and Laurie are exploring the options.

He has an appointment with the nephrologist in Sacramento on Monday and we'll see where we are with the kidney and anemia levels.

Feeling better...

This was Jonny Wednesday... Sitting up and happy.

home sweet home

Jonny D, flew home today with Jonny T.(dad) and mom Laurie and brother Gage. He was very tired, but so happy to be home once more.

Judy and I (Grandma and Grandpa) want to add our profound thanks for all the prayers and support. The wonderful care the medical staff at Legacy Emmanual Hospital provided will never be forgotten. We know he has a ways to go to regain his full health but are confident that he will.

Good News!

The dialysis catheter was pulled this morning and Jonny will be flying home to PUC today!
The staff at Legacy Emmanual Hospital has been just wonderful but it is time to be home.

The e-mail address has been changed to JonnyD's...(rupethemonkeyboy@yahoo.com) and, we hope, the comment section is a bit more accessible.

Thursday Labs

BUN 47, Creatinine 2.3, Hgb 6.9 and Hct 20.5. The phosphorus/calcium balance is much better. It looks like the kidneys are starting to come back.

We're waiting for the doctor to come around to let us know if we're going back to California today.

Wednesday Morning Report

The labs that were posted were excellent news but we always wait to hear the Dr. report before we get to excited.  Good news this morning is that they feel we are about at the end of all this for now.  It is another day of waiting.  Since he had dialysis yesterday we have to wait and see if the good numbers are because of the dialysis alone or because his body is also helping out now.  The Dr. is very hopeful that tomorrow (thursday) morning labs will show us that his body is in fact responding well and he will be discharged at some point tomorrow. We are hopeful to catch a flight home later in the day if all goes as we hope.  Have we used the word "hope" enough.  It's what has kept us plugging along as we continue the waiting game.  We look forward to seeing each of you again soon!

Wednesday labs

LDH: 819
BUN: 42
Creatinine: 2.38
Platelets: 122,000

The H&H aren't changed, so remain low. Other than that, the dialysis improved his kidney numbers!

Tuesday ... Regular stuff

Jonny is feeling a great deal better.  He walked in the hall with the PT and his appetite has really kicked in.  He is in dialysis again today and seems to be tolerating it well.  He is on a medication to boost the production of RBCs in the bone marrow and the doctors want to see if that works fast enough to avoid another transfusion.  

He is cheerful and patient but anxious to get back home.  The doctor visited him in dialysis and told us that he might be able to fly back to California on Thursday or Friday if he continues to improve.  He is somewhat dazed by the extent of the prayers that have been sent up for him.  We are so grateful for the support from all of you.

Tuesday "tech stuff"

Platelets are up to 91,000 ...which is good considering where we started.  Hgb today is 7.1 and the Hct 20.3.  BUN 93 and Creatinine 4.39, Calcium is low and phosphorus high. The LDH is down from 2000+ now and is 1031.  He is holding steady but not actually trending up in his labs yet.

Monday Morning Report

It's more good news this morning as I sit and watch JD doing a little physical therapy.  We are still in the waiting game to see how his body reacts. However, his labs this morning were very good and he is hopeful that the kidneys are beginning to recover.  If everything goes as we hope then he will be able to come home on Wednesday and follow up with the Dr. at UC davis.  There is a chance that he may need another round of dialysis tomorrow morning and a transfusion. It will all depend on how the day goes.

The physical therapy is exhausting but he is a trooper. Thanks again for all your support and prayers.  We are taking it one day at a time with much hope!

Light at the End of the Tunnel

The second dialysis went great and for the first time, his labs are turning around! He still has a way to go, but the doctor feels that if he progresses the way he thinks he will, we could look at being able to maybe come home by the end of the week. The Doctor is planning on contacting some nephrologists at UC Davis for transition and follow-ups on his Hemolitic Uremic Syndrome.

Again, we can't begin to tell you what it has meant to us to hear about all the friends and families praying for Jonny Jr. It truly has made all the difference and is a testament to the power of prayer. Please keep those prayers coming, and if Jonny can keep things improving, we might be able to thank many of you in person.

Sunday Morning

Having dialysis in the room this morning (not ICU)... The good news this morning was that platelets are up to 52,000 (from the teens)... More later.

Next up...

Not feeling to good today. Might have a little to do with having malfunctioning kidneys'. He's up for another transfusion tonight, and is planning on another exciting hook-up on the dialysis machine tomorrow morning. We're also hoping to try some jello or popsicles to have food for the first time in five days.

Thank you for all of your love, care and prayers. Thinking of me and watching out for me. I'm doing okay with all the procedures, but I'm just exhausted and ready to be better. Can't wait to see everyone and...I just want water. 

It's amazing when the small things in life can mean so much to me now that I can't experience or have them. I hope to see you all soon.

I would love to hear from you all, but if you could please use this blog for messages...which I want... so my phone doesn't die.

Jonny

How we got here...

Friday, Jan 16, Jonny flew to Portland to visit his biological mom. Beginning Saturday morning he became very sick and when his condition worsened Sunday he was taken to the hospital. He was admitted that evening and began treatment for what they thought was a parasite he had picked up in Egypt.

After a short release to home on Tuesday, he began to get worse and developed more problems. He was readmitted Wednesday afternoon and more testing began. In the middle of the night Wednesday we were informed that he was in acute renal failure and he was transferred to Legacy Emmanuel Hospital in Portland. It was at this point that he was diagnosed with Hemolytic Uremic Syndrome. It is believed that this was caused by either E-Coli bacteria or something he picked up in Egypt. At this point they simply don't know.

Thursday his spirits were good as they put in the PICC line so he wouldn't have to be poked for IVs and blood draws. At this point we were waiting to see how his kidneys would respond.

Friday morning we were informed that his labs weren't looking good and that he would need a blood transfusion as well as dialysis. The transfusion was successful. They put in the dialysis catheter and he had his first round of dialysis last night. They said that it couldn't have gone better and that his body responded very well.

This morning, Saturday, his lab results are encouraging and the dialysis was successful. We are now continuing the waiting game to see if he is going to need another round for his kidneys.

The doctors have encouraged us that he is progressing through the syndrome as he should be and are hopeful for a full recovery. The hospital staff has been amazing throughout the whole process. Thank you all for your prayers. It's knowing that you are praying for his recovery that makes this process a bit more bearable.

Thank you all for your support and we will try to keep you up to date on his condition.

The Hospital

The hospital Jonny is Legacy Emmanuel, 2801 N. Gantenbein, Portland, OR 97227. Room 3526. I understand that it is a tertiary pediatric hospital.

Update on the dialysis

Jonny and Laurie wanted you know that young Jonny got his dialysis catheter this evening, has had his transfusion and is now in dialysis. He is in good spirits and was thrilled when he was allowed to drink more than an ounce of water before the dialysis started. They are so grateful for all the prayers being sent up around the country.

He's sad

My Brother is sad that he has to be away from all his friends. but he is doing well. put him in your prayers. God bless you all. -Miranda ( his sister)

Friday

I'll get this up to date on what got us to this point, but for now: Jonny will be getting a blood transfusion today, then a dialysis catheter placed and dialysis. His blood work shows that he is very anemic and his kidneys are in acute failure. He is tired but in good spirits. More later.