Wednesday, November 25, 2009

We are not done.

Owen's stent removal surgery was on Friday. We expected to be done as far as urology surgeries after that. We are not done. I don't have all of the info about the next steps, but here is what I do know.

Dr. Gazak did a cystoscope to see what was going on in Owen's urinary tract. He removed the stents and then did a VCUG (voiding study). One side looked good and voided properly. The other side collected urine in the still large upper part of the ureter and did not void properly. As Dr. Gazak said when he entered the conference room to talk to us after the sugery "It isn't good." He was upset, we were upset. I cried because we were supposed to be done and we are not done. Dr. Gazak had to put the stent back in on the "bad" side. There are evidently a number of options at this juncture. Dr. Gazak said that he plans to proceed conservitavely. He mentioned a few options, but frankly Wes and I were just too shocked and devestated to ask a lot of questions. All I could think to ask him through my tears was, "Do you promise that you can somehow fix this?" Perhaps this was a totally inappropriate thing to ask of him, to ask him to make such a promise. He did however look at me and make the promise. He hugged me and promised me that he would fix it. I know he means it. I know he would not have promised me something that he could not deliver, not with Owen.

What we do know is that Owen is still better off than he was when he was 5 weeks old and first got sick. Dr. Gazak didn't do anything wrong, Owen's ureter just needs more. I just don't happen to know what the more is right now. I do know that Owen is still a happy, healthy Little Man. I know that I am sad, I wanted to be done. We are not done, but somehow or another it will be ok. Owen will continue to fight, we will continue to fight with him, and Dr. Gazak will do his part and keep his promise to fix my son.

Owen will be having a renal pelvic ultrasound and we will learn more about the more next Wednesday.

In other news I am actually in the hospital right now. To make a long story short I have a very bad kidney infection that has failed to respond to two seperate antibiotics. I had another follow-up with my urologist today. The infection has gotten worse and I feel worse. He told me I had officially failed outpatient treatment and had to be admitted to the hospital for treatment. I hate it and this is the last place I want to be, but I do need to consider the safety of my kidney.

Sunday, November 8, 2009

Wonderful Friends

I have a group of wonderful Mommy friends that I have had the pleasure of knowing since we were all pregnant with our children who are Carter's age. Their support has always been extremely important to me. We have helped each other through a lot of Mommy stuff. It is wonderful to have people that are going through the same or similar things that you are and to be able to talk about it. There have been so many times in the past 4+ years that I have wondered what I would do without them.

The kindness of these women has always been obvious to me. However, just last week I was blown away by just how kind and loving they are. 12 of my friends collaborated to give my family an extremely generous gift. In a box delivered by the postman we found toys for each of the boys (which they were thrilled by) a gift card for Wes and I with instructions to use it to order dinners in and enjoy our family as times have been so difficult lately, and a card addressed to me saying that something was on the way that would provide "Me time". I was touched, Wes was touched, I cried. I called my friend Jenn, the sender of the package to thank her. It was at this point that she told me to check my email for the "Me time" gift. Sure enough within 10 minutes I had in my inbox a gift certificate to a local spa. I will be having a hot stone massage.

I am so thankful to this group of women for always being there for me, always listening and offering advice and for being great friends in general. I don't think I could ever thank them enough. I love them all!

Tuesday, November 3, 2009

Kids Say the Darndest Things: Volume 2

While we were in the hospital with Owen, my mom was driving with Carter. They passed a party store that had a huge blow up pumpkin on the roof. Carter was quite fond of this pumpkin and pointed it out excitedly each time we drove past it.
C: Grandma, look at the big pumpkin.
Grandma: That is a big pumpkin.
C: Am I going to be stuck with YOU for Halloween?
Grandma: Why are you not having fun with me buddy?
C: Yeah, I am.

Again while driving with Grandma while we were in the hospital with Owen.
Passing a field with grazing cows.
C: Grandma, the farmers need to come and get all of the milk out of those cows' gutters!

Yesterday while eating blueberry muffins for breakfast.
C: Mama, I have a really good sense of taste!

Tonight at dinner as Wes was telling me about a dumb man show that he was watching the other night.
C: (in a calm, but stern voice as if he were reprimanding a child) Daddy, I understand that you are very excited, but you need to give everyone a chance to talk. I need to sing a song.

The kid totally cracks me up.

Sunday, November 1, 2009

Photo Update

Here are a few (ok a lot) of the photos that I have not had a chance to post lately. All the way from our trip to the farm and pumpkin patch, to Owen's surgery and then Halloween. Enjoy!

Carter's first pony ride.
Owen hanging out.
Carter eating lunch at the farm.
Owen resting on the hayride.
Carter finally picked one.
Owen likes this one.
Carter really pondering the choice at hand.
Boys in the pumpkin patch.
Carter picking up a big one.
O checking out the pumpkins.
The great pumpkin search.
Owen in the pumpkin patch.
Carter feeding a peacock.
Mama and the boys at the farm.
Carter and Daddy looking at the baby pigs.
Carter and Owen at the farm.
Carter feeding the animals.
Carter and Daddy at the farm.
Carter batting
Grandma reading to Owen,
Owen reaching for Grandma's hand under the door.
Carter and Mama watching the Steelers game
Carter all ready for his sleepover with Grandma and Pappy.
Hungry and tired boy before surgery.
Owen drinking Pedialyte in the hospital after surgery October 19
Owen sleeping in the hospital October 21
Daddy holding Owen October 22
Owen laying with Mama October 22
Owen playing with Mama's phone.
Owen double-fisting Pedialyte
Grandma visiting Owen in the hospital.
O sitting with Mama playing with Daddy's Powerade bottle.
Owen trying to escape and explore. October 23
O and his balloons October 23
O eating graham crackers with Daddy- October 23
Possibly the cutest and saddest photo ever.
Owen in his crib October 24
Owen laying with Aunt A - October 24

Owen hidden by balloons in the hospital October 25
Carter the Cowboy on Halloween
Daddy and his Baby Bee on Halloween

Unhappy Baby Bee

Swine Flu Mama

Carter and Pappy at Trunk or Treat

Belated Update- Ups and Downs

I have been meaning to update since we were released from the hospital on Sunday (last Sunday, not today) with Owen. Since my last update he has had a lot of ups and downs, hence my reluctance and lack of time to post. I think I'll do a bullet-point update. Otherwise this post would be long enough to be published as a novel. I'm also a little foggy on the timeline of much of what has gone on. Here goes:

- Owen's was made NPO (nothing by mouth) because of his extremely distended abdomen. His belly felt as hard as that of a woman in her 7th month of pregnancy.

- Owen was taken for an abdominal x-ray to make sure the distended abdomen was merely a result of built up gas and extremely slow bowels. I was very nervous that it was something more serious, but alas the Little Man was full of gas.

- Owen's pulse-ox level crashed and went down to 75 at one point. He was also having really funky sounding breathing and seamed to be in respiratory distress. Three nurses including a PICU nurse came to listen to him, and eventually respiratory was called. They thought his lungs sounded clear, it sounded more upper-respiratory. The still ordered an epi breathing treatment PRN. Dr. Gazak was called and decided he would feel most comfortable having one of the pediatric intensivists on the floor come examine him. Dr. Pat came in and ordered a steroid to help with the post-surgery swelling in his breathing tube due to being intubated. She also ordered a chest x-ray to rule out pneumonia. He sounded really croupy and it was very worrisome. We were able to avoid the epi treatment, the steroid helped and the x-ray was negative for pneumonia. The result was watch and wait. And when I mean watch, I was obsessed with watching his pulse-ox and listening to his breathing.


-Owen's pain was just not under control. He was receiving IV doses of Morphine every 3 hours. At about the 2 hour 15 minute mark he would start shaking in pain. Not good. Dr. Gazak decided that since his epidural was still in to administer numbing medicine, it would be a good idea to switch his pain control to Phentynal through his epidural. That helped A LOT.

-Owen finally slept a bit more comfortably. This is of course besides the nurses and techs constantly coming in to administer antibiotics and check his vitals. I finally started forbidding the techs from waking him to take his temperature.


-Owen is still NPO. I hate it. It is so awful not being able to feed him. He just looks so sad and pitiful laying in his crib.

-Owen's cough was persisting and he had spiked a fever of about 102. He was swabbed for the flu, which turned out to be negative. Of course we were informed that the test was only 56% accurate. What?!? He was put on droplet precaution just in case. Any nurse that came into the room was to suit up in a plastic gown, gloves and a face mask. Some did and some didn't. Since he was on two very strong antibiotics the doctors said he most likely had some other sort of viral infection. Again, watch and wait.

-Late in the day Owen was given the go ahead to start drinking clear liquids. He started drinking Pedialyte and luckily kept it down. After the first 2 bottles (2 oz. each) he didn't have much interest, probably because he was receiving so much fluid through his IV. They turned the drip down to see if they couldn't make him feel more hungry and thirsty.

-Owen was taken off of his strong antibiotic and switched to his normal prophylactic medicine PO, only he had to take it twice a day instead of once.

-Owen chowed down on some yogurt, one of his favorite foods. It was so good to see him eat.


-In the morning an anesthesiologist came to remove his epidural. I was super anxious because he had been doing so well with the pain medication through the epidural. On the other hand, they do not send babies home with needles in their backs, so it was a step in the right direction.

-Owen had a rough time with withdrawal from the Phentynal and the switch to oral pain medicine.

-Owen slept better than he had. At one point he slept through a scheduled dose of Loritab and the nurse didn't bring it for him. When he woke up he was in agony. That was when we decided he was to receive a dose every 4 hours no matter what until his pain was under control. It was important to get him over the hump.

Friday and Saturday were pretty much more of the same, with progress here and there. Owen was a bit more active, and his eating and drinking began to pick up. It was still not at a normal level, but that was to be expected. We were hopeful that we would be released on Saturday. When Dr. Gazak came to see us he was very pleased with how Owen was doing, but still not comfortable sending him home. He wanted to be cautious and make sure he was ready. He wanted another day to make sure no further complications crept up. He wanted him to be closer to his normal eating and drinking routine. Of course Wes and I want what is best for Owen and fully trust Dr. Gazak, but on the other hand we really wanted to go home. The four walls of that hospital room were really starting to close in on us. We missed Carter and we really were just crushed.


-Dr. Gazak came to see Owen after church, sending everyones' best for him. He also authorized discharge! We left the hospital around 12:30.

-We came home and got to see Carter. It was so great to see to see him. We all missed each other so much. Unfortunately he had come down with something, fever cough etc.

-Owen was thrilled to be home and wasted no time showing everyone how he could run around and play. He was especially happy to see his big brother. He also tired quickly and we had a hard time getting him to take it easy.


-I took Carter to the pediatrician. He was swabbed for the flu, which was negative. The doctor thought he had what is called parainfluenza. It is basically a flu-like virus with muted symptoms and the fever isn't as high. I was glad it wasn't the flu, but not so glad that my Big Guy couldn't be given anything to make him feel better. Motrin and cough medicine became our best friends. Carter however did not want to befriend them, especially the cough medicine. That stuff does taste pretty nasty.

The rest of the week:

-Each day was a battle to get both boys to drink. Carter came around more quickly than Owen did. I can't tell you how many times I was on the phone with the Judy talking to her about how many wet diapers Owen had. That woman is a saint, though she is probably getting tired of constantly having to talk this crazy lady out of losing her mind.


-Owen had his super pubic tube removed in Dr. Gazak's office. I will spare you the details of how that was done. It was gross and I had to look away at the end. Right before Dr. Gazak went to take it out he warned us that it might not come out if the dissolvable stitch that held it in his bladder had not dissolved, it would not come out and we would have to come back on Friday. Thankfully that didn't happen. I was thrilled to get that thing out. No more double diapering, and another step in the right direction. Owen wasn't so happy about it first because obviously it hurt. He was left with a hole where the tube was, just below his belly button where his vesicostomy had been. Dr. Gazak said it would close on its own since the bladder is a muscle and would atrophy to close the hole. This was another time that I found myself looking at him saying "whatever you say". Sure enough the whole that was about the size of a pen had shrunk to half the size by the next morning.

-About 2 hours after the tube removal Owen spiked a 102 degree fever. I was very concerned. Wes hypothesized that it was from having the tube removed; his body's reaction from having a foreign body removed. I was hopeful that he was right.


-Owen was extremely lethargic and out of sorts. After calling Judy to ask her about the probability of developing a fever after having a super pubic tube removed (very likely) and being told that getting a urine sample wouldn't be a bad idea, I took Owen to the pediatrician. She did a thorough physical exam and couldn't find anything really wrong. She took a urine sample (luckily not having to cath him) by just pushing on his belly. He actually peed on her, I was so proud! She also decided to change his antibiotic to a stronger one used to treat UTIs in case he did have one. I of course made her call Dr. Gazak and make sure he was ok with it. After all he is the go to guy for all things urinary. He agreed.

I got a call later in the day saying that his urine sample was positive for a UTI. I was crushed, worried, overwhelmed. My first thought was, "oh no what if this means the surgery didn't work." Like the crazy woman that I am, I called Judy to tell her and ask if we should be worried that the surgery didn't work. She said it is not at all uncommon to develop a UTI after the type of surgery Owen had. Also, he still has the stints in place, so as she said he still has a highway for infection. She said the switch to the new antibiotic was a good proactive step. She was going to talk to Dr. Gazak and see if there was anything else he wanted to do and call me back only if there were any changes. No call back! Also no more fevers. They sent the culture off for growth. We should know more on Monday about the type of infection and if the antibiotic that they have him on is going to work. It does seem to be doing its job (knock on wood).


-Owen is eating and drinking much better. We have been able to cut back the dosage of his pain medicine and even switch to Motrin for some of the doses. He is still recovering and having some pain, but is doing a lot better.

-Carter is feeling a lot better. No more fever, and hardly coughing at all. Now he is just a cooped up almost-four-year-old trying to drive Mama and Daddy up the wall.

-I went to Urgent Care yesterday after taking a turn for the worse. High fever, cough, congestion, extreme aches and exhaustion. You guessed it, I have the swine flu. Really? Just what I need. Oink! I am on Tamiflu. I still feel wretched. I am supposed to stay 6 feet away from the kids. It is especially worrisome if Owen would get it, he has had enough complications. Also, we are pretty sure Carter already had it when he had the flu in April. Still, I have a really cute pig flu mask. Wes has been wonderful taking care of the kids and making sure I get my rest. Thank you husband!