Crash

We heard from Shriner's Thursday about Peyton's foot surgery. They had the entire board meet last week about him and they have decided they will not do any surgeries until he has a kidney operation. They will not risk losing his kidneys with the anesthesia. Dr. Barnes has said that he wants us to seek a second opinion from Duke as soon as possible because they do not agree with the doctor here just letting him go like he has - they believe he is in fragile condition. Needless to say we were pretty upset. After an entire day of phone calls, messages, and return phone calls we finally got a schedule going for this month. We were able to have Peyton's renal scan moved up to this Thursday - Oct. 4 at 1:30. Then we're going back to Houston the 7th or 8th through the 11th so we can get him some new splints. He has almost outgrown all he has. And we'll also be able to sit down with the doctors and sort this stuff out. We are hoping that tomorrow Shriner's will call the kidney specialist here and get on the same page. The kidney specialist is clearing Peyton for surgery and says there is no reason why not. So we really need for these two places to get together and see what they can come up with. Dr. Makres called me yesterday and counseled me a little bit about the whole situation which was quite helpful. He says before we take him to Duke we need to check and see if Dr. Preston Smith, a urologist in Knoxville, will see Peyton and give his opinion. He says Duke has no advantage over him unless he is just uncomfortable with Peyton's arthrogryposis. So he is going to call this doctor tomorrow and find out. Maybe we'll get this worked out! I feel like this renal scan will be the determining factor. And it could boil down to us taking Peyton somewhere else for treatment of his arthrogryposis. So of course, as always - - MORE WAITING. We will update on that again soon.
As for Morgan - she had her colonoscopy this past Wednesday and all is well. She has a perfect healthy colon and there is no sign of damage from the chronic constipation over the last several years. The child doesn't even have the first hemmorhoid which is hard to believe. It was a tough couple of days for her but she sailed right through it and is back to her normal self. We will just have to keep her on stool softeners and practice better bathroom habits. That's all we can do! Her diet is perfect so it's not that.
Just pray everything works itself out with Peyton's treatment.

A couple of more things...

I failed to mention in the last 2 blogs that Peyton got his SSI! It was definitely a BIG surprise. We thought for sure we were above and beyond what they allow but they have a strange formula they use to figure it up. We won't complain though - it is a huge blessing!
Morgan has been having some problems lately with her bowels. Last week for the first time in her life she had diarrhea for 6 days. We ended up in the ER with her Tuesday night because she was passing blood and mucous. No stool at that particular time - just blood and mucous only. They sent her home from the ER and said they could find nothing - they even did an exam on her and felt no abrasions or hemmorhoids. So anyway the diarrhea continued throughout the week along with the bleeding and we ended up at the doctor Friday morning. The doctor did another exam and he confirmed again he felt nothing. He is sending her to a specialist to have them get her in for a colonoscopy. Her initial appointment for a consult is this Thursday. Most anyone who knows Morgan knows what a tough time she's had over the last 3 years with chronic constipation. She continues to battle it and now this bleeding is just worrying us. It has stopped along with the diarrhea but we need to see what is going on . She has just been through too much for too long. So we'll let everyone know about that too when we get more info.

We have a little news...

The nurse called today with the results from Peyton's blood work. It is showing normal kidney function. She wants him to come back in the morning to do a repeat urine culture due to the bacteria that was showing up on the last one. She said it could be that the bag was contaminated but they need to be sure. So if all is well with that he is definitely clear for surgery on his feet. She did go on to say that the doctor reviewed his ultrasounds and the right kidney is definitely worse than the left (the left is only mildly affected) and they want him to have a renal scan - which they are scheduling but we don't know the date yet. They will insert an IV and run this radioactive substance through his veins to see how it flows through the kidneys. This way they can see what exactly is causing the urine to back up into the kidneys. Possibilities are a blockage, ureter narrowing, connective tissue or something cutting off the flow, etc. Whatever it is may require surgery to fix. But it is pretty certain at this point that he does have fully functioning kidneys. God is taking care of him!
Hopefully this week we'll have our next trip booked for Houston. I will post again as we get more info . . .

Peyton's Kidneys

Peyton went to see the pediatric nephrologist this past Thursday. The doctor seems to know his stuff and treated us very well. He weighs 14lbs 12 oz - so he has gained more than a pound since we were in Houston last time! They took urine and blood for testing. They had to draw the blood from his femoral artery - it took several tries. We felt so bad for him. The doctor talked with us for a while and ended up sending us to JCMC for ultrasounds of his bladder and kidneys. We could tell by the look of the ultrasounds that his right kidney is pretty bad. The ultrasound tech even agreed. It was huge and full of these black areas indicating fluid. The left kidney was not near as bad. The ultrasound tech said that in his opinion if he had to rate the severity of the left he would say mild. Based on that we are forced to believe that the condition of his right kidney is moderate to severe. The radiologist was supposed to come in and talk to us but at the last minute she said she needed to call the doctor and speak with him first and then let him talk to us. We have yet to hear anything back. We have been on edge the last couple of days. We're so worried what they're going to say. When you research hydronephrosis (the condition he has) there is a broad spectrum of situations. It ranges from a doctor just placing him on observation with or without antibiotics over the next year to see if it worsens, all the way to kidney failure. Please pray for Peyton! He just doesn't need this - he is going through so much already. We will hopefully know something Monday. I will be ringing their phones off the hook at the office if I haven't heard anything by lunchtime. The good news is that if Peyton's blood work comes back normal he is clear for surgery on his feet! They are looking for increased levels of creatin in his blood which would indicate his kidneys not functioning normally - and of course any signs of infection. They called us today about his urine and said that there were some things in his urine culture but they aren't sure if it was just contamination or something trying to start up. There was so little of it - whatever it was. And he has had no fever or anything so we will just watch it. And one praise is that he is in no pain - that is a major plus. AGAIN- PLEASE PRAY FOR HIS KIDNEYS!! I will update again when we have some answers.

Great News!!

Peyton got TennCare! We got the letter today!
Nothing else new but just wanted to share that with everyone!

Round 2 Houston

It has been a very hectic couple of weeks for us and we just haven't had a chance to update this thing! We're so sorry because we know there are some who check all the time.
We didn't have internet access this time in Houston - our modem was broken and we had to get a new one.
Our trip was quite interesting this time - it seems like there is always a story to tell. We flew Continental Airlines this time around - using the complimentary tickets they provided us. We barely made it on the plane - I mean BARELY. It was nothing but an act of God. We checked in for our flight via internet earlier in the day. Our flight was to leave Knoxville at 5:55 pm Saturday. We arrived at the airport an hour in advance ( going on what the Continental website advised for a smaller airport) to find NO ONE at the ticket counter to check our baggage. We already had our tickets - we just needed to check our bags and get through security. Chad was parking the car and I stood there with Peyton and we waited and waited. Beside us was another group of girls waiting check baggage for the same flight as well. Finally a security guard came around the corner and apologized saying it was too late, the plane had already been loaded and they have closed the cargo area up already. He said there were no more flights leaving that evening and we might have a chance at another flight the next day - but most were booked up due to the holiday. I was devastated. Chad came through the doors right at that time and I told him what was going on. The other group of girls was arguing with the security guard but he just said too bad. I walked up to him and said look - we have got to catch that plane. We told him that Continental provided those tickets to us for our medically needy infant and we have got to get to a hospital in Houston. With that being said, the security guard said well in that case let me go speak with the Continental staff. He said that we should have been there and through security at LEAST 2 hours before departure because on weekends the ticket counter staff also have to go work security and they finish up early. 2 hours in advance??!!! That is crazy. Knoxville airport isn't squat to some of the airports we've seen and there's no reason they should put people through that because they under staff their airport on the weekends (a holiday weekend to beat it all too). So anyway, within 10 minutes he was back and told us they were going to open the cargo back up and let us on. Boy were we sweatin'. Thanks to us, the other group of girls got to go ahead and board too. See - Peyton blesses the lives of others everyday - even ones he doesn't know.
Sorry for that long story but thought it was worth sharing. We got to Houston and this time we stayed in a parent room inside the hospital which was just like hotel room. We had access to everything we needed. He went through the usual routine of seeing the doctors and therapist the first weekday we were there. The doctors and therapist were so amazed at his progress over the last few weeks. He has made leaps and bounds. Some of his joints have improved as much as 40-50 degrees. It is truly amazing. They even said he was ready for the foot procedure (where they clip his achilles tendons). He had his MRI on Tuesday morning. He SAILED right through the anesthesia part with the exception of his IV access. They tortured our poor baby trying to run a line in his foot. They gave up eventually and ran it in his head. Not before infiltrating his foot with saline though. His foot was blown up twice the size it normally is and when you pushed on his skin, saline just oozed out. It scared me to death. He was all bruised up and had little holes everywhere. We have good news and bad news with his MRI results. His spine is OK, no defects - everything perfect. However, his kidneys have apparenty worsened. When I was pregnant they told me he had some kidney reflux and his kidneys were a little larger than usual. Its called hydronephrosis. But while he was in the NICU after his birth they did an ultrasound and ran some tests that confirmed it was going down and it should end up self-correcting. It actually is somewhat common in little boys and only a select few end up having surgery to correct it. We now are afraid that Peyton is going to be one of those few. We have to see a nephrologist here at home and get him checked out. Shriners will not do his foot procedure until this is rectified or the doctor clears him for surgery. We were supposed to go back on Sept. 24 to have his surgery for his feet but now his kidneys will probably set us back. We got a referral to the only specialist in the tri cities and he can't get Peyton in until Oct. 16. I will be calling daily to see if there are cancellations he can fill though. Hopefully he will be seen sooner. We will have to get back to Houston pretty quickly if his surgery is going to be delayed because he is seriously outgrowing his AFO's and they didn't have time to make new ones on this trip. They didn't want to fool with it at first because they were expecting him to have the surgery at the end of the month and it would be a waste. So they just made adjustments to them to try to get him through.
Well if I think of anything more I will post more tomorrow. It is late and one of our babies has woke up. Sorry for the sloppy grammer throughout - I was in a hurry.