Wednesday, December 17, 2014

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!

Monday, December 15, 2014

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!

Saturday, December 13, 2014


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...

Friday, December 12, 2014

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.

Thursday, December 11, 2014

Mind Blowing Scariness..

Yesterday morning was definitely one for the books. We have been through a lot as a family, and Jason and I have watched Parker go through the ringer medically more than once, but yesterday nearly took the cake. At 4:30 a.m. I woke up to Parker screaming "Momma!" over and over again. I shot up from this excuse of a couch/bed that they give parents and ran to his side. He kept asking for his water, which I though was amazing. I remember thinking, "Finally, he is turning for the better if he wants to drink his water!" I was wrong. When I got to him with his sippy cup and held it up for him to drink, he was on fire. Literally. I called for the nurse, and when she took his temperature it was 103.6 axillary. Which means that technically his core temp was 104.6. She ran out of the room and minutes later came back with his dose of Tylenol. She was quickly followed by the floor doctor who seemed pretty concerned. In his opinion the fever was bad enough that he wanted to consult with the renal team about a rescue dose of Motrin. We were told that Parker is never to have Motrin because it can damage the kidneys, so the fact that they were considering giving it to him despite the consequences was alarming.

Typically his team of doctors doesn't come in to round with us until 10 or 11 o'clock on any given day, so when his entire team walked in at 6:30, I almost lost it. At this point they wanted to become aggressive and test for anything and everything under the sun just to be sure that he didn't have something else brewing on top of the Adenovirus and Coronavirus. By 8 o'clock things weren't looking good. The doctor was very concerned about his kidney function. Usually Parker's creatinine baseline is 0.3-0.5, but when we got here it was 1.3. Over a 24 hour period and pumping him with fluid, it came down to 1.0, which kept us optimistic that he was simply dehydrated. Yesterday morning, however, it went from 1.0 to 1.2. A climb in kidney function while already on IV fluids is not a good thing. On top of all of this his diarrhea was still out of control, he was lethargic, and he managed to yank his own IV out. Unlike the amazing facilities at CHOP-that we desperately miss- CHNOLA doesn't have an IV team. So we had to wait hours for the anesthesiology team to become available to put in another IV. In the meantime the doctors all discussed the probable causes of fever and ran a slew of tests including stool cultures, strep cultures, and blood cultures. They also called in the Infectious Disease doctors to consult on a possible diagnosis. The doctors were extremely concerned that the simple Adenovirus had turned into Systemic Adenovirus, which is when the virus implants itself into the blood stream.  We were told that our best case scenarios was that the antibiotics had caused the c-diff infection, which would explain the diarrhea, but that our worst case scenario at this point would be Systemic Adenovirus.

In order for you to completely understand the severity of the situation, I may need to give you a little medical lesson. You see, the anti-rejection medicines that Parker takes daily suppresses his immune system just enough so that his body doesn't attack his new kidney, but that he still has enough of an immune system to hopefully fight off any viruses or infections. With his ANC nearly bottomed out at 0.5, his body didn't have enough of an immune system to fight off whatever was brewing, and the anti-rejection medicines were only going to keep suppressing his immune system. But if we lower the anti-rejection medicines to allow his body to fight off the virus, his body could potentially attack his kidney. Do you to see the dilemma?

Needless to say, Parker had everyone, including his usually calm, cool, and collective doctors very concerned.

I am happy to report that he is now 36 hours fever free, and the diarrhea has started to improve. His creatinine came down from 1.2 to 0.8 with increased fluids and less "heiney output", so his kidney function is improving. We did have to lower his anti-rejection medicine to allow his body to fight off the virus, but with the improved creatinine levels we are hopeful that his kidney isn't at risk. The cultures for c-diff and strep came back negative, but we are still waiting on the results of all of the blood tests taken this morning, including the one that tests for Systemic Adenovirus. The doctors are optimistic, though, that since he is starting to turn for the better that he simply just had the virus. They also believe that the virus caused him to have a bout of colitis, which is causing the abdominal discomfort and diarrhea. He's slowly started to drink and take a few bites of snacks here and there, but don't worry his attitude is still securely in place. Did you expect anything different?

Tuesday, December 9, 2014

Keep Your Germs to Yourself!!

Up until recently I had never heard the term "adenovirus". Anytime I was sick, the doctor either said "Oh, it looks like you have the virus", or "Your blood work shows you have a viral infection". No doctor had ever given me the technical terms for the viruses I had contracted, so I never had a specific virus to detest. It seems that technology has come leaps and bounds in recent years and now the doctors can pin point exactly which virus you have. This is how my hatred of the evil demon adenovirus started...

Only a few months ago, Parker was admitted to the hospital for the first time since his kidney transplant. When we got here, the doctor told us that the viral panel they tested for came back positive for adenovirus. I thought, "Okay it's just a virus, it could be much worse". And I was right, it really could have been much worse. He was sick, but no sicker than I had seen him many times before. Fast forward to present day, and things have done a complete 180. In his three years of life, which I know isn't much, I have never seen him this sick. Today marks day seven of high grade fever. As soon as we get the fever under control, it is already beginning to spike back up. So far it's gotten up to almost 104 degrees, and even with the highest dosage of Tylenol it shows no signs of giving up any time soon! Well, what about Motrin you ask? Unlike most kids, he isn't allowed have Motrin because it can damage your kidneys.  Yeah, sorry, that kidney is far too precious to be taking risks with. He sounds terribly junky, has swollen tonsils that make it impossible for him to drink, is wheezing when he breathes, and has pooped more times in the last 3 days than he had in the entire month before- which explains the dehydration. The dehydration has his sodium, potassium, and phosphorous all messed up, and to top all of that off, his ANC count is extremely low. Yeah, don't worry, I had no clue what an ANC count was up until a few years ago either. Basically, his ANC count determines how is immune system is responding, and right now his immune system is practically non-existent at 0.5, and it's usually at 4.0- 5.0.

I'm usually a very level-headed person. I understand that my son is not in picture perfect health, but I also try not to put him in a bubble. I allow him to live life and we try not to live in fear of germs. Today, however, I'm just frustrated. I'm frustrated because he has to go through this..because he has to fight and be stronger than anyone else does.. because he can't have Motrin, which always worked 1,000 times better when he was a baby... and because someone, somewhere had the audacity to give this virus to my baby. How dare them! Yeah, I know that the last point makes me sound like a lunatic, but just let me be mad for a minute.

 This is the perfect example of why I try to preach to people that a simple virus affects our baby much differently than it will any other kid. This is why I try to explain to people that if you or your child are sick, please stay home. He is far more susceptible to contract these infections, and it takes his body much longer to fight them off. Please be considerate this cold and flu season. Think about others when you are out in town coughing and sneezing all over everything. Remember that children like Parker end up in the hospital for days, if not weeks, over that simple cough and sneeze. If you aren't feeling good, stay home! If your child isn't feeling good, please don't send them to school or daycare! All I am asking is to have respect and compassion for others. Put yourself in other peoples shoes and think about how you would feel if the roles were reversed.

Thursday, November 13, 2014

We've been keeping a secret...

A couple of months ago I wrote a post about a topic that was weighing heavy on my mind. At the time it was the question of the day, and it seemed that I couldn't go more than a couple of days without someone asking it. The question was simple, but I'm pretty sure that most people probably didn't realize just how much our hearts broke every time it was asked. The question quite simply was, "How much longer does he have to keep that tube on his face?"

I ended that post telling everyone that I would be sure to let them know as soon as his tube was finally out. Well,  I'm happy to tell you all that we have been 2 weeks tube free now! It's a huge milestone for us, because this is the first time in his entire life that he is completely tube free. Of course, this milestone comes with several stipulations. Parker has a calorie and fluid requirement that he has to meet everyday, and, in true Parker fashion, these numbers are much higher than most 3 year-old boys. He has to eat over 1300 calories, and drink more than 1400 ml of fluid a day. Yes that is right, he has to drink a liter and a half of fluid every day. I'm pretty sure that as a 29 year old adult, I do not drink that much fluid in one day. I know this because I tried to accomplish this recently and struggled. If for any reason he does not meet his established daily goal, the tube must be placed again. Some days are really good and he drinks it all without any question, but some days end with me in tears from fighting with him to drink all day, and barely meeting his goal. Every day is a struggle, but so far we are doing well.

There is a downside to this situation, but it is something that we have accepted. A person's kidney function is directly related to their fluid intake. While Parker was getting continuous fluid throughout the night, his creatinine (kidney function) was 0.2-0.3, which is amazing. When speaking kidney language, the lower the number, the better. Now that he is going all night without fluids, his creatinine has taken a jump up to 0.5-0.6. We redid his labs several times this week just to be sure, but no change. For a couple days, we weren't sure if we would have to put the tube back in, but all other numbers look great, so his team is fine with it staying out. Their explanation is that he is now going 9 hours without fluid before labs, whereas before he was only going 1 hour. This simple act can make a huge difference, but he's making up for it tenfold during the daylight hours, and is actually getting more fluid intake now than he was before. We are so happy, and so proud! Thank you to all who have prayed for this!


Sunday, November 2, 2014

Our first trick-or-treat!

This year is the first year that Parker is old enough, and healthy enough, to go trick-or-treating, and I am happy to say that he had a blast! Initially, Jason and I had our reservations about bringing him, because he is very shy around people he doesn't know. He tends to get clingy, and forces us to carry him everywhere when he's around new people or new places; however, he did not display this behavior once. We pulled him around the neighborhood in our handy dandy Red Flyer wagon, and he eagerly held up his pumpkin for treats. His vocabulary isn't quite up to par for him to say "trick-or-treat" just yet, but he made sure to tell everyone "thank you" and "buh-bye", which made us very proud. Here are just a few snapshots of the night.

Friday, October 10, 2014

One year ago today...

One year ago today our lives changed forever. At the time, we couldn't possibly comprehend exactly what that meant. Our lives revolved around machines, medicines, feeding schedules, shots, and constant vomiting for so long that it was our new normal. We knew that our life after transplant would be better, but never in a million years did I imagine it could be this good. 

In the last few months, Parker's eating has increased dramatically. In fact, in the last couple of weeks he has started to eat and drink enough by mouth that we only have to give him water through his tube at night to keep his kidney happy. It's such a big difference from the days of revolving our daily schedules around making sure he went to sleep at a certain time for nap and bedtime in order for him to get in enough food. It was a carefully orchestrated schedule and a serious math formula to figure this out. 

Because he is eating so well now, Parker is finally growing. Before transplant he was very far from being on the growth chart for weight and height. Now, however, he's finally in the 50th percentile for weight, and the 10th percentile for height. 



Parker was finally able to start daycare, and has improved in his speech by leaps and bounds. Before transplant he was only saying "momma" and "dada", but now he is stringing together multiple words. For instance, today I gave our dog, Pheobe, a bath, and Parker very excitedly said, "Momma, Pheobe splash splash!" 

Looking back at all of the posts, pictures, and blogs from this day last year has dug up all of the emotions as well. We are so blessed to have such a selfless person give us the gift of a new life. We are beyond blessed to have so many friends, family, and community members stand behind us on this journey. Never once did you guys leave our side. We are spending our weekend celebrating the healthy new life our child has, and we hope you take time to do the same. 

Tuesday, August 26, 2014

Happy Birthday!!

Today our son turns three years old. The irony in that sentence is that over 3 years ago one individual man looked us dead in the eyes and told us we would not be able to keep him after he was born. I look at my son every day with awe, and every night I thank the good lord for one more day with him. He has defeated all odds and has endured more in his lifetime than any grown adult that I've ever met. It hasn't always been easy, and many days he pushes every button I have, but I wouldn't change one nanosecond of my time with him. He has grown into a shy, loving, independent boy who loves Cars, Toy Story, and monster trucks. He has attitude and spunk, but knows his manners when necessary. He is our pride and joy, and we want to wish him the best birthday ever!  Happy Birthday Parker Joseph, we love you to the moon and back!