Kicking off the Mardi Gras season

Today Parker had a routine procedure done at Oschner Medical Center. It's one of our first procedures done outside of Children's Hospital, but it was such a smooth process. Parker's liver condition, Congenital Hepatic Fibrosis, can cause what are known as esophogial varices. These varices can be extremely dangerous, and sometimes even fatal. Essentially, varices are abnormally enlarged veins in the esophagus. It doesn't sound so bad, but the problem is that these particular veins are smaller, and not designed to carry large volumes of blood. The added pressure can cause the veins to begin leaking or rupturing. If this happens, the patient needs care immediately or they risk bleeding out. If the varices are found before they become critical, a doctor can "band" them. Essentially the doctor will wrap a band around the vein, preventing it from bleeding. 

Our area has finally gotten its first pediatric hepatologist. She wanted to take a look at Parkers esophogus and see if he had any varices, what stage they were at, and if any of them needed to be banded. We are extremely happy to report that they did not find ANY varices! she said that everything looked perfect, and that we would not be repeating the procedure annually, unless he begins having complications. Best. News. Ever! 

Kicking off the Mardi Gras season

Today Parker had a routine procedure done at Oschner Medical Center. It's one of our first procedures done outside of Children's Hospital, but it was such a smooth process. Parker's liver condition, Congenital Hepatic Fibrosis, can cause what are known as esophogial varices. These varices can be extremely dangerous, and sometimes even fatal. Essentially, varices are abnormally enlarged veins in the esophagus. It doesn't sound so bad, but the problem is that these particular veins are smaller, and not designed to carry large volumes of blood. The added pressure can cause the veins to begin leaking or rupturing. If this happens, the patient needs care immediately or they risk bleeding out. If the varices are found before they become critical, a doctor can "band" them. Essentially the doctor will wrap a band around the vein, preventing it from bleeding. 

Our area has finally gotten the it's first pediatric hepatologist, and she wanted to take a look at Parkers esophogus and see if he had any varices, what stage they were at, and if any of them needed to be banded. We are extremely happy to report that they did not find ANY varices! she said that everything looked perfect, and that we would not be repeating the procedure annually, unless he begins having complications. Best. News. Ever! 

When life throws you a curveball...

I remember being a senior in high school and thinking that all of the teachers and guidance counselors were absolutely crazy. I was only 17, how in the world was I supposed to choose the exact career choice I would pursue for the rest of my life. That seemed like a task way too heavy for a person who was still considered a child. I mean what if I chose the wrong thing, went to school for eternity, and then hated it? Essentially I was right, I was far too young to even know what career my personality was compatible with. Everything that I thought I wanted to be was in the medical field. I sat through numerous biology and chemistry classes, and I was miserable. The first time someone spoke about catheters and foleys, I ran in the opposite direction. After only two years of college, I decided that I never wanted to work in a hospital or doctors office. The medical field just wasn't for me. Ironic how life plays its cards, huh? Now I get to be nurse mom, and experience it all anyways. I took a few years off to re-evaluate things and during that time I spoke to a woman, essentially a stranger, who made me realize that teaching was my calling. History was my favorite subject to learn about, and the way she spoke about her students made me want to make a difference in the next generation.

I was young and unmarried. There was nothing in my life that would stop me from devoting my time to 180 children every year. I finished my degree in three years, and got a job immediately. Six months later I was married, and only a year later I found out I was pregnant. That's when life changed drastically. Eventually my one miracle baby required more of my time and attention than all 180 students combined. In the three and a half years since Parker was born, I am sad to say that I haven't been as stable and consistent for my students as they need me to be. Dialysis, transplant work ups, annual procedures and tests, surgeries, the big kahuna of surgeries- transplant, and post- transplant complications have all taken me away from my duties as a teacher, because my duties as a mom came first. It hasn't been fair to my students, my administration, or my co-workers. Most times the responsibility of my classes falls on the shoulders of one specific co-worker, and not once has she complained, taking it all with grace. Honestly, I don't know what I would have done without her.

This last illness, the blood infection, has kept Parker our of school for nearly two months. His ANC didn't quite recover as quickly as we all hoped it would, and it's still on the low side of normal. After looking at our calendars, Parker has almost been home sick more than he has been at school. For an entire year post transplant he never had a single major illness, but in the five months that he was in day care we had numerous illnesses and two lengthy hospital stays. By no means is that a reflection of the daycare, but a reflection of his body's ability to fight off the germs and bacteria. 

After much consideration, we have decided to take Parker out of daycare for the rest of the year, and I will begin a new journey towards a career that will allow me to be flexible and available to Parker and his needs. This is not something that we have taken lightly. I have spoken in great length with two local mothers of chronically ill children, and they both work in the same career field. They are able to make their own hours and schedules. They are flexible for doctor appointments and hospital stays. They are able to bring their child to work, or work from home when necessary. These career qualities are all necessary for one of us to have in order for our family to remain a two career home. So please say a few extra prayers for us, because this will be a big change for our family. This change is not only in our daily life, but also in our financial life, and honestly change in any form is always scary. I have completed the necessary courses that I will need, and hopefully in a few short weeks I will be a licensed real estate agent. Yes, I know that is a huge change from being a teacher, and the amazing students that I have had over the years make it hard to leave, but like I said flexibility and Parker's continued health are what is important for our family. We believe that these changes will give us the best chance to make that happen.

As always the continued prayers and support from our family, friends, and the community are greatly appreciated! We are lucky to have each and every one of you in our corner.

Answered prayers..

Dear Santa,

Meet me at my house. I will have the cookies and milk waiting!






















Love, Parker


We are discharged and on our way home. Please keep our big guy in your prayers, he may be out of the woods, but he still feels terrible!

Taming the bull...

Our son may only be 3 years old, but I'm absolutely certain that their is a 30 year old man locked in that body somewhere. Any time that we have to do something around here, he puts up a fight. Changing his diaper, there's a fight. Giving medicine, there's a fight. Getting vitals, there's a fight. Drawing blood for his lab work, there's a fight. Abdominal ultrasound, there's a fight. Changing out ports on the central line, there's a fight. I know what you're thinking, "Oh, he's only three years old, it can't be that bad!" No, I assure you that he has the strength of a grown man. He will buck his entire body off of the bed and then wail himself back down, just to get out of doing something. Typically it takes two or three people to hold him down during any given event, and it always goes smoother when daddy is around. Let's face the facts, he is a lot stronger than I am. Usually we only have to do two or three of those things a day, but today we had to do them all while daddy was at work, and it was a doozy. Hence the title "Taming the bull". By the time 2 o'clock had come around we were both so worn out from the day that we crashed for nearly three hours. Let me get you a visual...

Before the ultrasound:

After the ultrasound:

Other than wrestling with each other all day, today was a pretty good day as far as progress. His kidney function finally came down from 0.8 to 0.5, and his urine output increased significantly. This is amazing news for us, and gives us hope that his kidney will make a full recovery from this nasty virus. He is still fever free and diarrhea free, which means that his body seems to have successfully kicked the virus to the curb. He's also started eating and drinking more by mouth, and tonight we are starting him back on his continuous feed of formula. We are going to start at a low rate and gradually increase it overnight. He has to be tolerating his full feeds again before we can be released, so this is just one more step in the process. The only setback that we have had today is that Parker's H&H levels were low, indicating that he was anemic. We have been taking large quantities of blood from him everyday, sometimes twice a day, so his body needed us to replace what we were taking out. In order to give his body a boost, he received a blood transfusion this afternoon.

The labs that were drawn this morning showed that his Prograf level was extremely low, almost undetectable, which is not a good thing for his kidney. If you remember, we did have to stop his Prograf for a while so that his body's immune system could strengthen and fight off the virus. Today we had to start the Prograf again, but at a much smaller dose. We actually gave him a rescue dose this afternoon around 12:30, and his regular dose tonight at 7 o'clock. Hopefully these two doses combined will bring his Prograf level to a place where his kidney is better protected. We also tested his blood this morning to determine the levels of Adenovirus that still remain in his blood. Those results won't be back for up to 48 hours, so the earliest will be Wednesday.

Once again, Parker's prayer warriors have come through. Please continue to pray that we remain on a path of improvement. We really are hoping to be out of here by Christmas next week!

Heartbroken...

Do you remember in one of my previous posts, I said that Parker's doctor mentioned that the worst case scenario for us was that the Adenovirus had become systemic, meaning it progressed to his blood stream? Well, this morning the blood cultures came back showing that he did indeed test positive for Systemic Adenovirus. Not only did the blood culture confirm our worst case scenario, but it's also brought to light our worst fear. The virus in his blood is attacking his brand new kidney, so we have to get it under control immediately.. like yesterday. Typically the cell count for Adenovirus in your blood is less than 100, which makes it undetectable. Parker's cell count for Adenovirus came back at 9,000, which means it's pretty aggressive. As if all of this wasn't enough to take in, his throat culture tested positive for Pseudomonas, which is a pretty ugly bacterial infection that isn't typically found in the tonsils. Treatment for the Pseudomonas is simple, antibiotics. We started him on Cipro last night, and he will continue on a seven day regimen of it. Treating the Systemic Adenovirus, however, is a bit more tricky.

The pharmaceutical treatment for Systemic Adenovirus is extremely toxic to the kidney and is only used as a last resort, which means that Parker has to fight this off on his own. The problem, though, is that even after lowering his rejection medicines, his immune system is still practically non-existent. Without a stronger immune system, Parker's body will not be able to fight off the virus, and the virus will continue harming the kidney. Which means that we have to do whatever we can to improve his immune system, and right now our only choice is to completely discontinue one of his anti-rejection medicines, the Prograf. This is the strongest, most reliable anti-rejection medicine that he is on, so by discontinuing it his immune system should improve significantly. But this method also comes with consequences. By discontinuing the Prograf, we are leaving his kidney susceptible to rejection. So either way you look at it right now, his kidney could be in danger.

His doctors, however, are extremely optimistic that he will come out of this situation healthy and with his kidney in tact. He is not the first of their patients to experience this, and they have had great success with the plan we have in place. Their optimism, however strong it may be, does little to stifle  my fear though. I'm usually a very strong, informed, and defensive parent when it comes to Parker's medical treatment. I don't lose it in front of the doctors, hell I don't usually lose it in front of anyone. When the doctor started talking today, though, no amount of concentration or poker face could hold back the tears. I actually stunned him into silence, which is a first. This by far is the most fearful that I have ever been.

Unlike me, Parker is being a trooper through all of this. Today is a much better day for him since he is 24 hours fever free.. pray that I didn't just jinx us again. His diarrhea is much more controlled this morning, and his urine output has increased a good deal. He stayed up most of the morning watching his favorite shows, playing with some of his toys-which is a first since we've been here, and he even ate a bag of Doritos chips without squirting it out a minute later.

According to the doctors we will be here for a good while longer. Their estimate is at least a week, maybe two depending on how long it takes his body to respond. The plan of action is to discontinue his Prograf, start IVIG to build his antibodies, and start TPN to give him nutrition. If you remember, Parker went down to surgery last night to get a central line placed so that we could give him nutrition through a line and bypass his stomach and intestines. This will give his body time to recover and hopefully completely stop the diarrhea.

Right now we need very specific prayers from everyone. We need you to pray that Parker's body becomes strong enough to fight this virus off, and does so very quickly. We also need you to pray that once the rejection medicine is stopped, that his body does not also attack his kidney...

Speaking too soon...

I've officially learned my lesson about speaking too soon. Parker's fever spiked back up around 9:30 last night. It's not as high as it was before, but still considered a high grade fever at 101.2. The floor doctors rounded immediately after and decided that they wanted to run more urine and blood cultures to be sure that his body hadn't started to grow a bacterial infection. This is when things start to get.. annoying.

Let me first say that I admire all medical personnel. I have respect for them. I appreciate them. I know that when they make decisions for my child that it is in his best interest medically. However, I don't think that they always think through how their decisions will affect him emotionally. You see, Parker already has high anxiety when it comes to strangers, doctors, and hospitals. Since transplant, we have made a lot of headway with him, and he was doing much better with anxiety. For the first time ever,  we were able to do lab work, take blood pressures, get weights, and listen to his breathing without a single argument from him. This hospital stay not only erased all of that progress, but I'm pretty sure it pushed us even further back than we were in the beginning.

Let me give you a "hypothetical" situation. Imagine that you have just fallen into a deep sleep, and are resting peacefully. You are suddenly jolted awake, and are being held down forcefully by two grown adults who are 10 times your size. One of those adults is now puncturing you with a needle, and the other is taping a bag around your.. personal area. That's how my kid woke up at 12 o'clock in the morning. Traumatizing much? This is the extreme case of what goes on, but I swear to you that somewhere in the nursing station there is a light or bell that goes off whenever a patient is resting peacefully. I'm convinced of this because not a single nurse comes in here for vitals, IV placement checks, medicine, lab work, or culture swabs until I have spent an hour of my time consoling him to sleep. Like clockwork, ten minutes after he's sleeping, they come strolling in to do whatever poking and prodding they have to do. Once they are done, they waltz out of here, and I spend another hour consoling him to sleep.

After our eventful experience, Parker didn't spike another fever until 9 o'clock this morning, and it came down immediately with a dose of Tylenol. His kidney function is continuing to look better. Today it dropped from 0.8 to 0.6, which is a move in the right direction. His ANC levels are continuing to increase, going from 0.5 to 1.5. This means that his immune system is getting stronger since we lowered the anti-rejection medicines. Hopefully this will allow his body to start fighting off the virus on its own. The only negative news that we have today is that his body isn't getting adequate nutrition. He hasn't been able to eat or drink in over a week, and the diarrhea is ridding his body of all of the good nutrients. The colitis from the virus still has his stomach and intestines entirely too sensitive for us to give him nutrition that way, and his bouts of diarrhea will only increase if he eats orally. So we are waiting to hear for the surgery team for them to place a PICC line. This will allow us to give him TPN, which is fluid packed with proteins, carbohydrates, lipids and his total daily nutrition needed,  but doing so bypassing the intestinal tract. As of now, the operating room is scheduled for 6 o'clock tonight since he has to be NPO for 6 hours before the procedure. Hopefully he will begin to recover faster if we can get him packed with some nutrients.

Please continue to pray. As of now the doctors say that we will "hopefully"  be out of here by Christmas. This is not how we envisioned spending our holidays with Parker.