Vicissitudes

Riley is back to normal.  We have one week until his Doctor appointment but all going from his attitude, I think all will be okay.

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Today we went to the surgical clinic to have Riley’s catheter removed after his hypospadias surgery. After a very long wait the doctor finally came in the room. His first reaction was amazement that Riley busted a stabilization stitch. He said he never saw that stitch broken. Leave it to Riley to bust that stitch like the one they told me he could never bust from his pull through surgery. He then ripped the tape and pulled the catheter in one quick motion, Riley was already crying but managed to take it up a few decibels. The doctor then was obviously surprised to see that the catheter came out of a hole that was below the tip and to the right. Panic set in for me, here we go again! Just once I would like some good news! The doctor was calm, but confused. He asked us if we re-inserted the catheter. I would be at the ER so fast if that thing fell out, there would be NO way I would ever attempt anything like that! He told us it will be okay and he wants to see him in two weeks after the swelling goes down to get a better look. Keep any eye on him and everything will be okay. I had many more questions after that but he eased my mind for each. He is the best urologist around.

We took him home and started pushing fluids to him in hopes he would urinate soon. Finally, he said he had to go! On the potty he sat and carefully let it out, my face was right there with a flashlight. Riley started to cry because it burned (expected) but my heart dropped because he was going from the tip AND from a hole to the side. I would have felt better with one hole but two!? immediately I called the doctor’s answering service. When he called back he said he was not worried as long as he was going. He told me to call anytime day or night for any reason. I love his doctor!  That links to his profile at Woman and Children’s Hospital of Buffalo webpage, I believe he has at least 32 years of experience today.  As the evening went on he went more and more and the burning went away. It “looks” like there is only one stream but it could be the two merging.

Riley is sleeping now. From his birth I alway have a little panic while he sleeps (actually when any of them sleep). I will probably check on him in an hour or so just to make sure. Now we wait again…

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Last Friday while eating dinner Riley came to me and said; “The light-truck is in my belly”.  WHAT!?  I had no idea what he was trying to say (repressing what I really did know).  I asked him to get the truck he was talking about.  He rummages through the mass of toys and bring over a large Matchbox type truck with one headlight missing.  I asked him; “Where is the light Riley?”, “In my belly papa, I’m sorry”, he replies. This happened at 7:05pm.  He said he did it during nap which was between 2pm and 5pm.

After calling his doctor’s after hours line three times I finally get a callback (one and a half hours later!).  They suggested to take him in for X-Rays.  I was too late to take him to the immediate care place so downtown we went to Children’s hospital, again!

When we arrived the place was packed!  Three hours later there was us and another … family left in the waiting room.  Getting to talk to the doctor she told us that there was no way the light would show up on an X-Ray (I ripped off the other light from the truck to show them the size and shape).  Told me to look for blood or pain and sent us away.  I thought that was what triage was for!?

He is fine and and no signs of blood or pain.  His doctor saw him this Monday too and was not worried at all.

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My son’s surgery ended four hours after it started.  Everything turned out the way the surgen said it would.  His ureters were tapered, and new valves were placed in his bladder to prevent the reflux.  This will help keep the kidney function he still has.  He is lying in bed now, kind of sleeping but not really.  I just sang him his favorite songs (the only two songs I can sing – the two songs I have been singing to him every night at bed time since the first day he came home.  We are just hanging out right now.  It doesn’t seem like he is in any pain which is very good, maybe just a bit uncomfortable, plus the TV is on so that might be bothering him a bit. Nurse is here for vitals.  Be Right Back..

<edit> I never finished this so I will post it as is.

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Tomorrow my son will be going for another surgery.  This time he will have his ureters removed, tapered and reincerted into the upper part of his bladder.  I do not know how much I explained already but they are doing this because he has reflux from his bladder back to his kidneys.  This is breaking down the function of the kidneys.  So far (either from birth or over time) one kidney is not very functional while the other seems to be okay.

I cannot write anymore about it but he is scheduled to begin his surgery tomorrow Monday September 22 at 12:30pm.  I am already going nuts.

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My son has his next surgery coming up next Monday Sept 22nd.  It is not going to be a good one.  He is older now (2 years) and knows what is going on.  He is also very active and will not be happy being in bed for two weeks.  I’ll try to post more about it later or even after it’s done.  We have soccer and gymnastics today I don’t want to spoil the fun.

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Family and friends,

We just wanted to update you on what is going on this week with Riley. First of all, we could really use prayers, as these tests are painful and scary for him (and us). We won’t go into true details but one of the tests is an injection in his arm, wait 2 hours, then strap him to the X-ray table to get video and images. This test is on Wednesday (tomorrow) and is called a renal scan to check the actual function of each kidney. The last test this week is the urodynamics on Friday. These tests the bladders function and, again, reflux into the kidneys. For this test, they insert a catheter into his uretur while Riley is strapped down to the X-ray table, fill his bladder with dye until it is a little over stretched, and then watch him urinate by taking video and images. This test takes about ½ hour on the table not including prep time.

There is an MRI of the spine to come, but we haven’t made the appointment yet.

Todd and I need prayers of strength, as we have to watch this and Riley does not understand why we would strap him down and “hurt” him. We can’t break down in front of him. Please pray that we have the strength we need and that Riley can come out of this entire journey ahead of him still, unharmed (emotionally, mostly). Also, for his siblings to find understanding, as all they know is that Riley hurts when he’s in the hospital. They just know this, we don’t tell them that but he does come home not feeling well at all (children are very smart!). Caleb told us the other night, “I don’t want Riley to have to hurt.” And Isabella was worried as well, saying, “Please don’t bring Riley back to the hospital.” Noah said, “Please don’t go to the hospital every day! I really miss you when you are gone all the time! And I don’t want Riley to be there!” So, it is affecting our whole family. Please pray that we find the right things to do and say and so that it may be possible for us to balance life at home and in the hospital once surgery is scheduled (they will schedule surgery after Friday’s test is complete).

Thank you very much again for all of your spiritual support (and otherwise). Thank you to those who have never given up on us!

With Love,

Todd, Danielle and the Paterek family

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Last Friday Riley wanted a little extra attention so in the way he knows best he demands it with another issue for us to deal with. He’s a great kid but after two days of wheezing and a quick call to his Doctor’s after hours line we were off to Children’s Hospital. As usual, we waited forever! Finally, we were able to see an intern who first said he had the croup. Knowing better we insisted on getting the RSV test. Sure enough it was positive. He got a steroid and instructions on the nebulizer again.

Today he is doing fine. He always has a great positive outlook on everything! Through the entire night there (from 10pm to about 1am) he was happy and playing, having fun with everything.

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March 07 my son had his final surgery!  The day before was difficult as he had to have bowel prep.  This is a day long process where they give him “go lightly”.  Everything is flushed out!  He could not eat, couldn’t sleep and was basically miserable.  I felt so bad because he did not understand why we were not feeding him, he just knew he was hungry and Mama and Papa did nothing about it.

One of the hardest things for a parent is to hand over their child and give up all means of protection for that child.  The Doctors and nurses at Buffalo Children’s Hospital are outstanding but they are not us.  With tears, we gave him to the nurse and began our three-hour wait.  At least the Sabres won!

He came out of the surgery as we expected in pain.  Morphine helps but it just is not the same.  Here is his scar, not very gross. 

Those are spacers they keep the incision open to allow any infection to come out.

A full day after the surgery he was his old self again.  I cannot believe how quickly he recovers from surgery.  That is not quite a smile but he was smiling already.  We had to try to keep his activity down as he wanted to start playing again. 

Here is his usual smile!  I think this was taken the day before we went home.

Five full days in the hospital, and three and a half days after surgery, he is ready to go home.  After all the discharge processes we headed home. 

He lost a pound or two in the process and looks tiny again.  We need to start bulking him up again.  The good this is that he is home, back to the zoo with his brothers and sister!  We are trying to keep his activity down but that seems impossible.  I cannot wait for his Physical Therapist to see him because she said he would loose a lot of strength and regress in his abilities, Nope!  He is picking up at the same point he was before the surgery.  Crawling, sitting, almost standing all at nine months with four abdominal surgeries. 

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It never seems to stop.  My son started coughing the other evening nothing serious so I did not think much of it until I noticed a bit of a wheeze and the coughing becoming more frequent. 

Several months ago, his doctor tried to get him a series of shots call synergy (or something).  These are expensive shots to prevent the RSV from hitting or at least hitting too hard since this could be a very serious condition.  The insurance did not approve the shots. 

Just our luck, when all was turning around he gets it.  I was ready to take him to the ER (or ED whatever it is call now).  Trying not to panic I called his doctor who was not very worried even considering my son’s medical history.  To me, he sounds like an old man who smoked his whole life hacking away bring up some disgusting piece of lung, combined with the worst asthma you can imagine. 

I took him to see the doctor yesterday (the following morning).  Yes, my son’s doctor does make special visits on Sunday’s (any good doctor would).  After a quick look he said it is RSV and gave a nebulizer treatment.  After, you would not believe the difference.  He sounded and looked great.  He said to keep an eye on him but he should be fine. 

We had a surgerical appointment scheduled for this morning.  Knowing how careful they are with our son we again expected him to be admitted to the hospital.  But no, they made nothing of it.  “Yes, he has the RSV.”  That was about all we got from them.  You might be thinking I am complaining that nobody is helping my son but I am not.  It seems that while this could be rather serious, for the most part it is not as bad as a parent might think. Now I have to write a disclaimer so nobody takes this post as medical advise. 

Well we have about three or four more days of wheezing and nebulizer treatments and thirteen or so for the coughing.  This will push off his surgery about two weeks.  Not much, we can do except ride out the virus.

Disclaimer: Do not take any part of this post as medical advise.  Always consult your doctor if you or your child looks, feels, or acts sick.  NEVER TAKE A CHANCE!

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