Thursday, October 25, 2012

Outpouring of Love

Thank you for the show of love and support after my mini meltdown. There will be more in the future. I am still in a bit of a funk but this morning's newborn photo session helped my morale tremendously. I just love my job. I can wake up feeling grumpy and then get to a photo session and have a huge smile. I am so fortunate to be able to say I truly love my job!

Nathan is feeling a little better each day. His doctor ordered him a decongestant which is helping him to be able to drink his pediasure and breath at the same time. Regardless I kept him home from soccer and preschool this week to let him rest and recover.

And how can I be sad knowing that we will be with family in Virginia all weekend!!!!

Tuesday, October 23, 2012

Life isn't fair

My parents taught me this lesson many times growing up, mostly in toy aisles in the midst of a tantrum. But it is true!

Life isn't fair and it is not always fun. What life is - difficult and often painful.

I have never once claimed that my problems are greater or more significant than someone else's.

No matter how big or small a problem may really be, it is important and stressful to the person experiencing it and is therefore significant. Whether it be a friend who had a hard drive go bad in a computer or experienced a death in the family - I show compassion.

Life is not fair and it is quite honestly painful at times.

I feel like people should have a pain and suffering quota, once you complete your quota you should get a little reprieve. I know...God doesn't give you more than you can handle...but how much can I handle?

Apparently, I can handle seeing family member suffering with disease and dying, I can handle bearing children with chronic fatal illness, I can handle the day to day stress of trying to keep son in good health, I can handle and accept the fact that my family is complete with two children, that we will never easily conceive another healthy child without the help of modern medicine and expensive procedures.

Certain things have become way of life for us. The first hospital admission was a huge ordeal that turned our lives upside down...the second hospital admission not so much. It is almost like I've become numb to things such as PICC lines, anesthesia, blood draws, antibiotics (i am becoming my own personal copy of the Physicians Desk Reference), hospital admissions (I know only two hospital admission by age 4 is actually tremendous and for that I am extremely thankful). I can handle making changes in our lives just to survive, I can handle cars breaking down...I guess I CAN handle it all.

...and sorry, the English major inside of me should be incredibly ashamed...this is stream of conscious, I don't really have a point, nothing I am typing is connected, there will most likely be spelling errors, so feel free to message me any mistakes you can find if you would like to kick me while I am down. Sorry that was uncalled for, especially since I am pretty much typing these thoughts to myself. I'll be sure to message myself at a later date.

I feel a little better now.

The remnants

This post will contain the remnants of the enormously long emotional post that I just typed and promptly discarded.

I dropped off Nathan's stool sample Friday and got the results today. The stool came back negative for c. Diff. That means Friday is his last dose of Flagyl and Saturday he resumes the Bactrim and azithromycin.

Saturday evening he came down with a fever. As of today, it is just a cold - no more fever, no bronchitis yet. His once poor appetite is now even worse because he can't breath and drink his pediasure in his bottle at the same time so he doesn't want to have pediasure at all.

Today I battled with him to drink two bottles of pediasure, then during dinner he vomited globs of mucous. His nurse called in some pseudophedrine and increased his airway clearance to three times a day.

(For the record, I am so ready to get this boy a g tube. Many people want to see this boy eat and it pains many to see him not eating but nobody has to deal with the frustrations I deal with breakfast, lunch, snacks, and dinner.)

I scheduled an appointment for an evaluation at the feeding and swallowing clinic for mid November. I'll try to hang on until then.

These are the remnants of the long winded and emotional post that is no longer.

Thursday, October 18, 2012

Inflexible

This week has been non stop go, go, go...

A quick recap:

Monday

We visited with a neurodevelopmental pediatric specialist.

I was overwhelmed, driving two hours with two kids for a two plus hour appointment to then drive two hours home. I normally take my dad with me to clinics to help out with the kids so I can actually communicate with the doctors, but he was home packing for his trip to visit his family in Spain.

Most of the visit went well. I only had to carry both kids through the parking deck by their arms because they both decided at the same time that their feet were not working.

The conclusion of this visit is that Nathan is an inflexible, rigid personality. No drugs required thank God, he needs no more medicine than he is already on.

Basically for a normal child, the parent would decrease the amount of pediasure/milk to increase hunger to the point where the child would eat. This does not hold true for Nathan. He is so strong willed that he would rather starve and dehydrate himself - remember how his blood sugar was crashing at 24 when he was admitted to the PICU a few weeks ago.

We left this visit with a referral to a applied behavioral analyst at a feeding and swallowing clinic.

As soon as we returned home, we had to hop right back in the car to drive my dad and brother to the bus stop. Being that the bus stop was 5 minutes from my husband's job and my anxiety level was peaking, we made a quick visit at the end of his work day to meet his coworkers.

Perk of the visit: sending kids home in daddy's car, making a pit stop to walk around DSW aimlessly, trying on shoes, and not spending a penny.

Tuesday

A pretty low key day at home. Had business to take care of and needed to be home for two clients to stop by.

Wednesday

Another visit to the hospital, this time to see Nathan's CF team and pulmonogist.

My father in law watched Teagan which helped tremendously.

The traffic stunk but what was even worse - forgetting my wallet at home, no money for breakfast, no money for parking, no money for lunch, no money period.

We arrived 15 minutes late because of the horrible traffic, I kept popping off the highway to take parallel running back roads.

Nathan and I had some deep conversations about whether or not I had Nathan when I was a baby. One main conclusion to our discussion is that Nathan wants "this many *raise both hands, ten fingers* baby brothers". He says he will ask God to give him baby brothers and the proceeded to name them all funky names beginning with "sinbastar".

Sorry Nathan, but looks like you will have to be happy with one little sister named Teagan.

Clinic update: Nathan is 36 pounds, not terrible but slowly falling off his curve. We definitely need to follow up with feeding and swallowing clinic ASAP. His doctor brought up the possibility of utilizing a feeding tube (gtube) again.

Since we know limiting the pediasure isn't going to lead him to eat solid food, we are temporarily lifting the limit on his pediasure consumption. For the time being he should be having 4-5 cans of the 1.5 cal pediasure.

If his stool sample still cultures c. dif (I already collected, it's in the test tube, triple bagged thanks to mother in law, in my freezer) then after he finishes flagyl next week he will go on vankomycin.

By the time we finished up at clinic I was starting to get dizzy. It was mid afternoon and I was still running on an empty stomach, not even a spark or a pumpkin spice latte to carry me over. I googled that domino's pizza accepted paypal but my phone was nearly dead, my dad's kindle wouldn't connect to the wireless, and I had no money to exit parking deck.

Luckily, at the gate I called an attendant to explain the problem to and he gave me a deferred payment slip.

And then my husband came to the rescue and ordered me a Hawaiian pizza and a diet coke at a nearby domino's and managed to give me directions just before my phone died.

Today

A day of mixed emotions, spent crafting and woodworking. Don't feel like revisiting much of what I felt today.

Tomorrow

...will be a new day and a clean slate. Praying for my soul friend who is having surgery early tomorrow morning.

That's all folks.

Sunday, October 14, 2012

Nathan's First Soccer Game

Let me just preface by saying, I don't know how preschool aged soccer is considered soccer at all, but it is absolutely adorable to watch especially when it's your child playing on the field.


Nathan had only been to one practice because his hospital admission temporarily interrupted our regularly scheduled activities, but Nathan was excited to jump right in not really knowing what to do.


He was extremely fascinated with the goals.  Running into the nets, sitting in the goal, knocking the goals over.  Initially I was terrified that Nathan wasn't really playing soccer but neither was anyone else.


When kids weren't running aimlessly in circles, they were all chasing the same ball.


And Teagan was extremely upset she wasn't playing soccer.  For the record she is really good at dribbling a soccer ball.



Most importantly, Nathan enjoyed himself and enjoyed having his family there to cheer him on and support him.





Thursday, October 4, 2012

Our Family {Autumn 2012}

Today quite a long day for us.  My husband used one of his personal days and we drove to have our family photos taken by my good friend Deborah, fellow photographer, at Redhead Photography in South Jersey.  It was well worth waking up at 5:45 am and sitting in rush hour traffic.  I am in love with our sneak peek and can't wait to blow this image up huge and hang this canvas on our wall.  I am in a photograph with my family!  This is what memories are made of!  I challenge you, go update your family portrait this season.


Monday, October 1, 2012

I wish he would just eat

During the most recent hospital admission, nurses were tracking Nathan's calories and recording everything he ate.

I would order his meals, filling his tray with high calorie items that most would scarf down in a heart beat. Mac and cheese, pizza, French fries, ice cream, Doritos, grilled cheese, peanut butter and jelly, bagel with cream cheese, pancakes, waffles, French toast, butter, syrup, pudding. You name it, I tried it.

Every few hours a nurse would ask me, "did he eat anything?".

I would show them the teeny tiny microscopic nibble(s) and respond with "a pediasure".

His doctors ordered 1.5 calorie pediasures knowing he was not meeting his caloric needs with the standard pediasure and his non existent solid food diet.

His team mentioned that they highly recommend we move forward with a full feeding evaluation. The topic had come up previously but he was making very tiny improvements like tolerating being at the table with others eating.

Now it is time. He has three more weeks of antibiotics for c. Dif so I don't want to do anything yet, until I know his intestines are clear. But I am going to go ahead and set up an appointment in advance so when his treatment concludes we are all set for evaluation.

I would also like to explore the chiari
Type 1 malformation more. I know from the mayo clinic website a symptom is:

Difficulty swallowing (sometimes accompanied by gagging, choking and vomiting)


Not saying chiari is the cause but all of the above have happened on multiple occasions.