The Morning-After-Surgery Update

I should be sleeping. As you can tell I am not, because I can't. Yesterday was one of the hardest days of my life. Top 10 for sure. I would say Top 5, but Owen has had 5 surgeries and it would be difficult to narrow it down to 5. Doesn't matter, yesterday was hard. It was hard because I had to wait knowing that my baby was in surgery, it was hard because the surgery took longer than expected (5 hours), it was hard because Owen's experience in the PACU (Patient Acute Care Unit, or Recovery) was not so good, it was hard because I have to see my Little Man hurt so badly. It was hard because I hate hospitals, I hate blood, I hate "gross" things. Owen has some gross things going on. It was hard because he is my baby and I don't want him to hurt or have gross things.

Owen came out of surgery at about 12:30. We spoke with Dr. Gazak in one of the conference rooms and he told us that it went well, but was a lot of work. As in, he had to do a lot to make Owen's urinary tract work the way it should. He made an incision between his ostomies (so like a smile across his belly under his belly button and just above his pubic bone). He took down his ureters from the ostomies and reimplanted them into his bladder. He had to reimplant them a little differently than "normal", in more of a straight line to the point of entry than the natural curve a ureter would take. There are a lot of reasons for this that I won't bore you with. He had to create valves from Owen's ureters to his bladder to prevent urine from refluxing from his bladder back up into his ureters and eventually into his kidneys. That is what got us into this mess in the first place, Owen was born without these valves. He took out the left ureter stump (the part that was left attached to the bladder when the ureters were disconnected 10 months ago) and used the (huge) right ureter stump to augment Owen's bladder. He also had to place a super pubic tube to drain Owen's urine while his bladder heals. I will spare you the details of what that means. It is one of the gross things. If you don't mind gross things feel free to ask me about it or Google it. That will stay in for about 7-10 days and will be removed in Dr. Gazak's office. He put that in through the site where Owen's vesicostomy was. Remember that was what his first surgery was, a vesicosotomy to relieve the pressure of the reflux, which didn't work as well as it needed too. He also placed stints which will be removed in 3-4 weeks during a short out-patient surgery. Did you get all that?

Recovery was awful. To put it mildly, Owen was ticked off. He was hurting, confused, disoriented etc. He was wailing. He also spiked a very high fever that was of concern to the nurses, who paged the anesthesiologist, who went into Dr. Gazak's OR and asked him what to do. He ordered a blood culture and a urine culture. We should have the results of those later today. Dr. Gazak came to talk to us (still in recovery) after his second surgery. He said he wasn't too concerned about the fever. First of all it is not uncommon in babies after such a long surgery. Second of all, he took down his ureters which were previously exposed at the skin, therefore bound to harbor some bacteria. Also, Owen is on two strong antibiotics which should fight off any infection. It was scary at first, but Dr. Gazak calmed us down. Not too long after that Owen's fever went down and we were taken up to our room on the Pediatric Unit. Dr. Gazak even came back to see us around 7 after his office hours. (I love him, you know that right?) He thought all was looking pretty good.

Last night was difficult. At about 1 am Owen started having very bad gas that was obviously making him very uncomfortable and was very painful to pass. At 4, not even a minute after receiving a dose of Loritab (pain medicine), therefore losing the medicine. As a result he was in pain and very restless for the remainder of the night. They also had to come draw blood around 4:30, which is always awful. Needless to say Wes and I did not get nearly enough sleep.

This morning Dr. Gazak's nurse Judy came to check on Owen while Dr. Gazak was in surgery. She thought his incision and super pubic tube looked good, but was not happy with his level of pain. She also said that his belly felt full and hard, probably full of gas. They gave him a dose of Morphine at about 8:30 and he has been resting comfortably since then, with the exception of when one of the anesthesiologists came to check his epidural. Hey people, I know you are trying to do your job and all but could you be a little bit more compassionate? And please stop waking my sleeping baby who is in a great deal of pain! Anyway, the epidural is working fine, it is just that it only really covers the pain of the incision not the internal pain from spasms etc. He is on an anti-spasmatic medication to minimize that.

I guess that is about all for now. Thank you all again for caring, thinking about and praying for Owen and our family.

My update from yesterday, in one post.

This morning we left the house at about 4:40, heading to the hospital for Owen's surgery. Luckily Little Man was able to go back to sleep in the car. We got to the hospital, checked in on the pediatric floor and were quickly taken to our room. A tech came in to take Owen's vitals as well as his height and weight. By this point Little Man was downright ticked off. Poor thing was hungry, tired and did not want anyone bothering him.

We were taken to pre-op holding a little after 6:15The anesthesiologist came in and spoke to us, asked all of the normal questions, explained the anesthesia (which we are all too familiar with) and told us about the epidural he was going to place for pain management. It will stay in for a few days and will mainly help control incision pain. He may need other pain medication also.

Several nurses came in and asked the same questions. Better safe than sorry. At about 6:55 a nurse arrived with Little Man's happy juice (versed). I was happy to see him more relaxed. He quickly forgot about his hunger and we were able to snuggle him for about 15 minutes before they took him back to the OR.

Dr. Gazak came in, gave me a hug and was prepared to discuss the surgery and answer the questions that he knew I would have. He mostly repeated what we had discussed in his office a few months ago. There were a few surprises, well things I did not know I should say. I had hoped he would be able to go in through the existing ostomy incisions, but he is going to have to make a new incision. The other big shock, which I will not be clear about until I see it, is that he will have a port for drainage for about a week. The purpose of this is that after what Owen's urinary tract has been through, normal voiding will be foreign to his body. It along with the stents that will be placed will ensure that he completely voids. In other words, the boy will have no choice but to pee.

We received word at 7:41 that surgery had started. We have also received 3 calls from the OR since letting us know that surgery continues to go well. Wes and I are sitting, waiting, praying and trying to keep worry to a minimum by keeping our minds occupied. (Hence my blogging).

I want to thank everyone who have been so supportive of us and offered prayer and positive thoughts for Owen and our family.

Ok so apparently texting a long blog post actually results in a million posts. Will have to fix that later.

I am testing the text-to-blog function.

T Minus One Week

Next week at this time, Owen's bladder surgery will be over. (Knocking on wood because any more postponing and I am going to lose it.) I can make it another week right? At some points during the day I really am not so sure. I am having a terribly difficult time right now. There is just so much worry, I have to work hard to occupy my mind, distract myself and think positively. There are just so many what-ifs, and if you know me you know that I am really good at getting caught up in what-ifs. You would think I would have learned by now that it really is not helpful.

Today was a particularly hard day. Owen's surgery was supposed to be today. If things had gone as planned, we would be in the hospital right now on the path to learning our new "normal". However, if things had gone as planned, we would be in the hospital right now with a little boy who just had very major surgery and whose doctor would be leaving to go out of town before said boy was even released from the hospital. This is what is best for Owen, and for that reason I will make it one more week.

Today was difficult for another reason. One year ago today Owen had his very first surgery. After a 10 day course of very strong antibiotics to knock out his near fatal infection, he had his vesicostomy. It was the scariest day of my life, exept perhaps the day he crashed and was rushed to the hospital. Either way, it makes the top 2. Looking back, as terrible as it was and as hard as this past year has been, on this day last year Owen was given a chance. He was given the chance to thrive and become the wonderful little boy that his is today. He was given the chance to have 2 healthy kidneys with minimal scarring and normal function. On this day last year Owen showed us what a fighter he is and he hasn't stopped since. He is my little tiger. I've said it before, I don't want him to have to fight and I hate watching him fight, but I am so happy that he did and continues to fight. I know he will do the same this time around, and we will be right there with him.

Pre-op Appointment

On Tuesday Owen had his pre-op appointment with the anesthesiologist at the hospital. He has never had to do this before, but after the respiratory issues he had following his cleft lip repair, we thought it necessary to discuss his surgery with an anesthesiologist. This is also the longest surgery, so obviously he will be asleep for longer than he ever has been. Basically what we learned is that they don't know why he reacted the way he did following the last surgery. The only light he was able to shed on the situation was that perhaps his trachea was particularly irritated because whenever someone has facial surgery or surgery on your neck the intubation tube gets moved around a lot as the surgeon works in that area. The other possibility is that the nerve block shots that Owen was given in his face to help with post-surgical pain could have made it difficult for him to feel that he needed to swallow. The build up of saliva would make it harder to breathe. We are hoping not to have any issues with anesthesia this time around.

Owen will most likely be having an epidural placed to minimize post-surgical pain. For his past 3 urology surgeries he has had coddle blocks, but may need something more substantial for pain since this is a much more extensive surgery.

The anesthesiologist also ordered pre-op bloodwork. Fabulous, since watching blood being taken from your one year old is excruciating. At least the nurses in the lab at the hospital downtown were good. Extremely good. Unfortunately they probably have a lot of peds blood draws. I called Dr. Gazak's office later that afternoon to get the results, but the nurse wasn't in. I didn't hear anything from Judy, who is usually great about things like that so I figured all was well. Then last evening I got a call from her saying that Owen's white blood cell count was a little bit low. I freaked out. All of the reasons that I could think of that I have heard of low white blood cell count came flooding to mind and I was terrified. I asked her how low? Are they dangerously low? She said that now, they are just a little low and that Dr. Gazak thinks that it is because of the long term (a year) daily antibiotic treatment that Owen has received to prevent kidney infection. Without getting into too much detail, the particular antibiotic that he has been on has two components, one of which when used for a long period of time can lower the white count. The solution? Today Owen started a new antibiotic that does not have that component in it. That should fix the problem and all should be well. Am I convinced? No, I am extremely worried. However, I also trust Dr. Gazak and know if there was even the slightest concern that something more serious could be wrong with Owen he would have had us at the hospital performing every test in the book. He says this is the problem and gave us a solution, so I am trying as hard as I can to quell my worries.

Happy Birthday Wes!

I didn't have a chance to blog yesterday, which was my wonderful husband's birthday. I wanted to wish him a belated happy birthday. He had a nice day with a presents and cards from the boys and I, a birthday lunch at work, well wishes from friends and family and then dinner out at a restaurant that we really like.

I really hope your day was special, Wes. You certainly deserve it. I love you!

Change in plans.

I have been wanting to blog about this for several days. I couldn't. I don't know if I can now. I expect this to be a mostly factual post. Most people can't understand the emotion I feel about this change in plans and the reasoning.

Owen was supposed to have his bladder reconstruction/ureter reimplantation surgery on October 12. I got a call on Monday from Judy, telling me that it has been pushed back to October 19. I immediately started to sob. I was in Kohl's of all places and sat right down on the floor in the bedding section and sobbed. Luckily my mom and my friend Andie were there to peel me from the floor and take me to the car.

Reason for the change: his surgeon, everyone's favorite urologist, Dr. Gazak will be away at a conference Wednesday through Friday of next week. Last Friday he and his nurse Judy were reviewing his schedule. She said to him, "Oh, Dr. Gazak, you have Owen's reconstruction that Monday before you leave." They discussed it, they mulled it over, apparently he didn't know what to do. He called Judy Sunday night at home and said, "I can't do it. You are going to have to call them (us) and tell them I can't do it. I can't operate on Owen and then leave town. I have to close of a personal relationship with this family. I can't do Owen and then leave."

So I cried in Kohl's for several reasons:

1. As soon as "Dr. Gazak" showed up on my cell phone I knew something was up. I don't get social calls from his office.

2. It was touching to me that he cares enough that he would not just perform a major operation on my son and then leave town. It spoke volumes about his commitment to Owen, to our family. It proved to me that all of the things I thought were there in the relationship really are there. I'm not nutty, he cares about Owen. The relationship I thought we had is real. It spoke volumes about what a wonderful doctor he is, which I already knew. I didn't think it was possible, but my trust in him has increased exponentially.

3. It is impossible to prepare yourself to ever send your child into surgery. Trust me, this will be my 6th time doing it. (Once with Carter, this will be the 5th time with Owen) It NEVER gets easier. Owen's first 3 surgeries were emergent. We didn't get to pick a date in the future. We didn't wait for the next opening, it needed to be done ASAP. His lip surgery was not that way, it was the first time I got a call saying, "Mrs. B does this date work for you for your son's surgery?" Um, no. No date works for me for my son's surgery. I don't want my son to have surgery. Yeah, I get it he has to. We didn't have a choice. The surgeries saved his life. Still, I don't want him to have to go through it and I hate watching him go through it more than anything. He has to go through it again. I will be there for him, I will so what is best for him. What is best for him is for the surgery to be moved to the 19th. Still, as prepared as it is possible for me to be, I was prepared for the surgery on the 12th. I know it is just a date. I know it wouldn't have been any easier on the 12th than it will be on the 19th. It is just the change. I'm not having an easy time with the change.

4. I cry. A lot.

Owen's will now be having his bladder reconstruction/ureter reinsertion on October 19 at 7 am. It is major surgery, the most major that he has had. There is just so much, too much to convey. He will get through it, we all will. It is going to be hard, but no harder than it would have been on the 12th. Now to just get to the 19th, and get past the 19th.

One year ago today.

I am one of those people who remembers dates, phone numbers, addresses and to be honest just a ton of other information. Don't get me wrong, I am not good at math. This skill never served me in a history class when asked to recall important things that happened and on what date. It is more like if it was important to me or someone that I love, I'll remember it. No photographic memory here, I'm just a weirdo.

That being said, one year ago today our lives changed forever. Owen was born seemingly healthy with a very minor cleft lip on August 27, 2008. He and I were discharged from the hospital 2 days after his birth, just like normal. We brought home a healthy baby boy, or so it seemed. As time passed he showed symptoms that mimicked those of GERD. I thought he looked jaundiced. We were given a prescription to reduce the acid in his stomach and I was told that he wasn't jaundiced, "that is just the way newborns look." It was 37 days later after his birth that we realized something was terribly wrong. Most of you know the story. For that reason and the fact that I don't have the time or emotional energy to tell the whole story. The short version is that the illness that Owen had all along (Grade 5 Bladder Reflux) gave him a terrible kidney infection. He crashed, went septic, had to be rushed first to the ER and then downtown to the PICU at Hemby Children's Hospital, and we came very close to losing him. This day last year was one of the very worst days of my life. This year I have a healtly boy with health issues and physical disabilities. This year, today I have a little boy who is happy. A boy who still has a long road ahead of him, but he is here and we are blessed. I truly do feel blessed today. I thank God for Owen, and my family in general. On the other hand I feel very emotional and have lots of anxiety to go along with the memories of this day one year ago.

Owen, thank you for fighting. Continue to fight, continue to give me signs, and know that I along with your Daddy and big brother will be always be here to fight along with you. We love you so very much!

Awareness

As you may know, October is Breast Cancer Awareness Month. I am always aware of Breast Cancer and how devistating the effects can be. This is because my mom is a Breast Cancer survivor. This year is her 9th year cancer free after enduring a mastecotomy and reconstruction. She is an amazingly strong, wonderful and corageous woman who means the world to me.

These days I believe one would be hard pressed to find a person who has not been effected by this terrible disease. In 2009 alone there have so far been 192,370 new cases of Breast Cancer diagnosed in women and 1,910 new cases in men. Yes, men can get breast cancer too. My grandfather-in-law is also a survivor.

My point, and I do have one, is that this disease is prevelant and devestating. It is also detectable. Go to your yearly doctor appointments. Have yearly mammograms. Do self exams monthly. Spread the word. I think it is great that we have an entire month dedicated to awareness for this disease. I also believe that it is something to be constantly awareness and congnicent of.

Below are a few sites that are useful for information, donation, etc.

www.Komen.org
www.thebreastcancersite.com (this site offers an awesome feature. Just by clicking a button daily you can help fund mammograms for women who cannot afford them. It costs you nothing!)
http://www.nci.nih.gov/cancertopics/types/breast

Anniversary trip to Charleston

Wes and I celebrated our 5 year Wedding Anniversary on September 18. The weekend after our actual anniversary we were lucky enough to get to take a trip to Charleston, SC to celebrate our anniversary with a vacation! My mom watched the boys, for which we are extremely grateful. This was the first time Wes and I have been away just the two of us since I was pregnant with Carter (4 years ago!)

We had a wonderful time. We stayed in the Historic District of Charleston. We walked, saw the sights, learned about the history of the city, ate delicious food, drank delicious wine and cocktails, and most importantly spent time together celebrating our relationship.

Guess what else? We took lots of pictures, which I have posted below.

Our beautiful hotel room.

The view from our hotel room.

The Market

Wes drinking a Guiness on the 250th anniversary of the brew.

Dinner and live music, divine!

Me enjoying some wine.

An old Charleston church.

Beautiful ironwork.

Another pretty church.

More beautiful ironwork.

Posing on the streets of Charleston.

Historic home.

Spanish moss abounds in Charleston.

Slightly North of Broad (S.N.O.B), where we had a lovely lunch.

Charleston Fire Station.

United States Custom House

A fire escape that I thought was cool.

Wes sitting on a bench in Marion Square.

Statue of Calhoun in Marion Square

Our hotel, the Francis Marion.

Replica of the first Civil War submarine.

Posing in front of the water.

The view looking out toward Ft. Sumter.

Wes' super delicious breakfast sandwich from the Farmer's Market.
Me and my super delicious crepe from the Farmer's Market.

We had such a wonderful trip and can't wait to go back!