Vicissitudes » The Story

Next surgery coming up!

admin — Sat, 13 Sep 2008 12:07:50 +0000

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.

Urodynamics – Nothing fun.

admin — Tue, 20 May 2008 15:14:12 +0000

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

A Few Updates

admin — Tue, 06 May 2008 19:42:13 +0000

So I’ve been away for a while, things have been happening. I don’t really feel like writing right now so here is a list.

1. The boys started Baseball
2. Riley needs another Surgery
3. Riley needs more tests – not fun.

So that’s not much but it’s what is on my mind. Until something interesting comes along it will have to do. I did add some photos under the PhotoPhone section.

Last Surgery – Done!

admin — Tue, 03 Apr 2007 15:09:04 +0000

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.

I hate health insurance companies!

admin — Wed, 28 Feb 2007 16:29:50 +0000

Okay maybe not insurance companies but the entire process. There is enough to worry about when your newborn child is going through surgeries, you should not have to deal with providers billing incorrectly, insurance denying a bad claim from a provider or the provider billing the wrong company or the wrong ID number.

Basically, what ends up happening is I have to do everyone’s work for them.

Opening The Doors

Bronchiolitis – RSV (Respiratory Syncytial Virus)

admin — Tue, 27 Feb 2007 01:27:44 +0000

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!

Update on my son.

admin — Fri, 23 Feb 2007 01:22:37 +0000

We had another visit with the surgeon yesterday and she was pleased to see his progress. We have our last surgery scheduled for March 14th with prep on the 13th. It will be nice to have things normal but I am not looking forward to the process. Since his last surgery a nurse, physical therapist, clinic visits, etc have seen him weekly… He is doing extremely well and is a very strong child. I pray all goes well for this next step. I know his muscles will suffer a bit but the PT is not worried because of how strong he already is going into it.

We had him baptized this past Sunday. It was very nice, almost a milestone we never thought we would reach. Big party! It is hard to believe we are coming up on his first birthday in June. Well four months away but considering what we went through. That will be a huge party!

Again, Why must he be away?

admin — Thu, 12 Oct 2006 23:05:08 +0000

Once again, the doctor admitted my son to the hospital. This time nothing serious just a rash around his ostomy site. When the doctor saw how severe it was, she immediately started working on getting him a room. This was yesterday.

The aggressive treatment was successful, already! Today there was very little sign of the rash and all things look like he will be coming home tomorrow. Thrilled, yet still sad to have him away from us. We spend as much time as possible with him but just cannot be away from our other three children either. They deserve a little bit of normalcy too.

Either way I will be getting him tomorrow and he will be sleeping at home tomorrow night – and waking me up at 3am to have a bite to eat, he and me. The downside to this is now that his rash cleared up, surgery number three is right around the corner.

The Miracle – Why Take This Away?

admin — Wed, 04 Oct 2006 03:26:50 +0000

Five days after his discharge from the NICU my son had what we considered a normal day. Nurse visit went less than perfect, but his 5:00 feeding he was not interested. I tried at 6:00 with a bottle when I got home from work with no luck. I decided to call the nurse who explained it is not uncommon for an infant to skip a feeding after a hard day. 8:00 came and still nothing so I called the doctor. While waiting for a return call my panic set in. I went though the roof when I picked him up and he was completely limp. CPR training kicked in, color was good but I “flicked” his ankle anyway. He started crying! We decided to take him to the emergency room at that point. My wife packed him up in his car seat as I was walking to the doctor. I spent a long night in the ER with him going through many x-rays. Finally, the next morning they found he had an obstruction in his small intestines. They scheduled surgery for thirty minutes later. The feeling of helplessness I had when I handed my little boy over to the nurse and watching her take him away will never leave my heart. Then came the long two hour wait for the word of how the surgery went.

The Miracle

admin — Wed, 04 Oct 2006 00:36:28 +0000

So much has happened with so little time for writing here. My son was born late June. He has a multitude of issues but they are all correctable. Twenty-four hours after his birth he had his first surgery then six weeks later another emergency surgery. We are waiting to schedule surgery number three. A few months later and number four will come then number five. That seems like a lot to ask of a child but I know there are others out there with even worse issues.

I know some may think that five surgeries there must really be something wrong. I guess I need to step back a bit now. I cannot even remember if I wrote about this yet but here it goes (I will try to finish in the limited time I have).

November 2005 we found out that my wife lost on of twins (six weeks into gestation). A slim chance of surviving gestation faced the remaining twin, since blood from the other covered him by about 75%. Time went on and all seemed to be going okay. Christmas time came and the doctors found a systic hygroma. Two specialists found the same thing and gave the baby zero percent chance of living another month. The doctor told me he would go into heart failure and die. After much grieving, many thousand prayers both by us, friends, family, and even strangers around the world we decided to get another ultrasound so we could remember our little child. We did not expect the results neither did the doctor. There was no evidence of the hygroma that condemned our child. Nobody believed it…

I am going to skip ahead a bit here since I am pressed for time. We prepared for several possible syndromes, mental issues, and more that I would rather forget about. June came around and he was born. The Neonatologist still was talking about syndromes (Nunan’s to be exact). After twenty-four hours I saw my third son (fourth child) naked for the first time. Do not ask why, do not ask how but the first thing I noticed shocked and frightened me. I looked up and said; “shouldn’t he have an anus?” The panic that set in is indescribable.

Anyway, another twenty-four hours later, he had his first surgery and an ostomy was put in. He then spent four weeks in the NICU recovering and relearning how to feed. We finally took him home. We did not fool ourselves thinking we were done with the hospital, we knew there were more to come. Unfortunately, we did not expect what happened five days after he came home…