Thursday, September 27, 2012

Last Day

We arrived in Myrtle Beach midday Monday and left Wednesday evening.

These photos are from our final day on vacation. The photos are going to have to speak for themselves because just uploading them has been a major production.

The kids had well baby doctor visits this morning for their annual check up plus flu shots and other immunizations. I actually switched on my phone and recorded a video of them running around our room acting possessed. I would have given anything for a pina colada right then and there. I've never been so happy for them to receive shots and refocus their crazed attention on a sugar free lollipop.

Some days multitasking seems impossible. Thanks to an Uncrustable, I managed to take a 10 minute break and hit the upload button for the following 12 photographs.

Teagan ate half of the Uncrustable and then discarded it onto the floor in a place I would surely step on it, which I did. Nothing like peanut butter between your toes, I guess there could be worse things to step on.

There is no such thing any more as being uninterrupted for even one minute.

I sit down finally, and the UPS man knocks on the door.

I change an awfully stinky explosive diaper.

I sit down again and someone rings the bell picking up a laptop that my husband fixed.

I sit down again and Nathan begs repeatedly for a bottle, you know since he doesn't eat food.

I get up and make pediasure, warmed and prepared just the right way and almost break my neck slipping on a puddle Teagan created from the refrigerator water dispenser.

I make her bottle first, since she followed me and wouldn't stop harassing me. It wasn't warm enough. I reheat.

I make Nathan's and have to hear him complain that I shook it and he wanted to shake it himself. I return to kitchen to retrieve enzymes and medication, I come back to Nathan complaining he has pediasure all over his shirt, his pants, and the couch because he opened the lid himself before drinking. I give him his medicine and am now spending these three minutes typing out my frustrations while listening to them both complain.

Hitting publish and heading out the door to help my father in law, as soon as I re dress Nathan and drag them to the car kicking and screaming. At least my kids will soon be happy with Grandma. It's just one of those days that shall soon pass.

Now to the fonder memories (or mixed memories) of our last day in Myrtle Beach.

Tuesday, September 25, 2012

Where is the time going?

When did my baby turn into a big 2 year old girl.

Monday, September 24, 2012

Mixed emotions

Having mixed emotions looking through the rest of our {very short} vacation photos.

This one makes me smile - Nathan makes the most of everything, he had a blast swimming around and around the lazy river, meeting new people, talking to everyone.

It also makes me very sad in retrospect knowing how sick he actually was.

Just hours later, he couldn't mask it anymore.

Friday, September 21, 2012

Discharged and home

This really happened quick, one moment Nathan was anticipated to be discharged after two weeks total IV antibiotics and the next moment all IVs had ceased and we were looking at a sooner discharge date.

C. diff (clostridium difficile)

Nathan started his usual runny stools 3 days after the antibiotics started but when it persisted for a few days (it did during his last hospital admission) the nurses began testing his stool. I found out Thursday morning Nathan was testing positive for C. Diff.

Initially, the doctor wanted to add a 4th antibiotic to treat the c. diff and keep an eye on the diarrhea which had already stopped.

After consulting with the gastroenterologist, all IV antibiotics were stopped (because they could interfere with treatment of the bacterium).

Nathan's blood culture was clear, his lungs sounded clear, so it was his doctor's decision to terminate his CF tune up a bit early.

As soon as he started taking his awful, metallic tasting flagyl, they would pull his picc line and work on discharge.

Since he swallows his enzymes 3-4 at a time, he swallowed tablets of Cipro on vacation, I thought he might do better with flagyl in tablet form.

Long story much shorter - he is home, swallowing his tablets of flagyl for the c. diff, and temporarily stopping the profilactic Bactrim and azithromycin.

He is feeling much better but I am going to hold him out of preschool for at least this week until I can be sure he is not going to put anyone else at risk.

It is mostly a problem with kids who aren't potty trained. And we are still working on #2. But on the bright side - no fever, no diarrhea!

Thank you so much for the prayers and notes. I have been reading all the kind words of encouragement and it has helped our spirits tremendously! Good night, I must get some rest for I have a full house again and I couldn't be any happier about it!!!!!!!

Wednesday, September 19, 2012

Hospital Day 7

I'm not sure if I would consider today day 6 or 7.

Last Wednesday we were in the emergency room in South Carolina. He had one dose of two different antibiotics via IV (tobramycin and zosyn). Irrelevant but Bre, when I type that medicine the IPhone wants to correct to your last name.

Last Thursday we arrived at Robert Wood Johnson emergency room in NJ. Nathan's blood sugar crashed to 26 and he was given a bollus of dextrose via IV then rushed in for a spinal tap, a picc line and an MRI. The spinal fluid tested negative for meningitis or anything else. The MRI showed chiari type 1 of cerebellum, which is of no concern at the moment.

Since last Thursday and after a billion finger prick blood sugar tests (he doesn't even wake for them anymore) his blood sugar has stabilized and the endocrinologist is not concerned about diabetes. It was all most likely caused by a septic blood infection, dehydration and fasting. There is still a possibility that the bacteria found in his blood culture are contaminants and that this was viral but aside from fever he showed no other signs of virus.

The two bacteria in blood culture are veridians streptococcus and Kingella kingae.

Again it doesn't matter anymore. He is received tobramycin, timentin and vancomycin through his picc line. The repeat blood culture is negative. I believe we are doing another repeat today.

Yesterday they performed an echocardiogram. No results yet.

We've been keeping busy around here. Trying not to get bored and Nathan's friends all chipped in and made Christmas morning happen for him in his hospital room.

Nathan is getting so much better each day. We miss being home, all together. I did get a chance to sleep at home again while Grandpa slept over. It was so nice to wake up with Teagan. She was so excited to hear my voice in the morning.

After a pumpkin spiced latte and some retail therapy, I am back with my boy.

They are doing calorie counts because he really isn't eating anything. No surprise there.

Diarrhea has almost subsided but they are taking stool samples to make sure he has no intestinal infection. And then there is a yeast rash and an allergic reaction to the tegaderm tape that covered his picc line.

Sunday, September 16, 2012

Breaking Out

No, we are not discharged and have been told Nathan will be here for two weeks but Nathan has big plans.

I don't know how long he has been scheming but he told the nurses multiple times today that I need to bring him a shovel so he can dig out of here.

Verbatim: "Mama, you need to bring me a shovel so I can dig down and go through the floor and fall into the car and you can take me to my house.  And then we can put an elevator over here and a hole in the floor with a pole that goes all the way down.  Okay, mama?"


Saturday, September 15, 2012

An empty bed

I came home from the hospital these evening to get some rest and take a bath, get changed, maybe go for a jog in the morning to blow off steam and pack what I need for the upcoming week.

My brother in law and sister in law came up from Virginia to visit munchkin and offered to watch Teagan (mini munchkin) tonight. I'm not very good at accepting help, but I am learning.

The house is quiet and empty. It feels nice but SO wrong. I couldn't help but peek into my boy's bedroom where he should be sleeping.

I haven't broken down as of yet but seeing his bed neatly made devoid of Nathan and his favorite Mickey blankie sure did leave a lump in my throat.

I am still in denial about how serious his condition was. With blood sugar of 26 he was so close to shock. What would have happened if we waited another
day in South Carolina? And the day his fever appeared, before it appeared, I knew he wasn't himself and something was amiss.

Today was a much better day for him. I managed to get him out of bed for a bit but he still has a low grade fever because the bacteria is still present in his blood. In addition he is severely constipated because of dehydration and lack of appetite.

I can't wait for him to be 100% Nathan again and have him sleeping in his bed.

(just, like this very second, got notice that Nathan had 2 bowel movements after suppository - hopefully it will be smooth sailing from here on out, pun very much intended)

Out of PICU

This first photo was taken in Myrtle beach shortly before we rushed Nathan to the emergency room.

Yesterday, was Nathan's first a last full day in the PICU. I am happy they were able to stabilize him so quickly. Being in the PICU you don't get much time to rest because they monitor and test do frequently. I even crashed on the window seat during the morning rounds. I thought Nathan napped to but the nurse said he was awake the entire time.

He had many visitors yesterday. Grandpa Frank brought a build your own airplane activity. 

...and the game of Operation. Both were big hits. Grandma and Grandpa Bill brought Teagan to visit and she spotted the play doh in less than 5 minutes. 


They also brought French toast bagels and ghost roaster, the Skylanders Nathan has been asking for all week. 

Nathan was transferred out of the PICU yesterday evening and is now on the pediatric floor. He slept through the entire transition.

He slept over 4 hours yesterday afternoon but the nurses reassured me he came in extremely sick, septic actually.

I'm not sure if I mentioned in previous update but his blood tested positive for gram positive cocci, most likely strep pneumoniae (pneumococcus). It was too early to know for sure. But he is on 3 different broad spectrum IV antibiotics that should take care of whatever it is.

We knew he was still feverish yesterday even though his underarm temperature was "normal". My mother in law and I knew he was not just sleepy and warm so I asked the nurse to check again and again. The 2nd time, the oral temperature was 101.7 - moms and grandmas know best.

While I was down on the 2nd floor washing the urine soaked Mickey blankie, the nurse gave Nathan Motrin to lower his temp. I stayed downstairs with the blankie for two reasons - 1. I wanted to interrupt and speed up the wash cycle and make sure the dryer didn't eat his blankie 2. I didn't know if I'd ever find my way back and forth since hospitals are like mazes.

By the time I got back up to his room Nathan was awake and smiling and playing. When we took our eyes of Teagan I heard splashing in the toilet - gross. She said she was taking a shower but it looked more like she was cleaning.

My cousin Angie and her fiancĂ© Chris Visited bearing goodies. A whole box of sprinkle munchkins just for Nathan and a box of assorted for everyone else. Sprinkled munchkins are a rarity around here, Chris had to call 4 or more Dunkin Donuts in the area! 

Nathan also got a gift from his friend Nico - a Mario! Nathan is even fascinated with the little hard plastic box Mario came in.

Thursday, September 13, 2012

Hospital in NJ

So much has transpired since yesterday.  At this point I am functioning on very little sleep, maybe 2-3 hours.  I have been writing short updates on facebook throughout the day but I know not all my family and friends are on facebook.

After Nathan received a bag of fluids along with both iv antibiotics, we signed ourselves out of the emergency room and my dad and Teagan picked us up to return to the hotel and finish packing the truck.  We officially departed Myrtle Beach, South Carolina at 9 pm.  My dad and I drove all night long and arrived at the ER of his CF Care Center.  My father in law drove down to the hospital to pick up Teagan who had already had enough of car and hospital.

The main reason we transferred to his care to his CF hospital was for high fever and lethargy.  The immediate plan was to admit him, have a picc line placed, and treat the mRSA he cultured last Wednesday (which we just found out) and the Pseudomonas which he cultured in June.  The hospital in South Carolina wanted to admit him for 2 weeks and I would much rather have him in the hospital with his pulmonologist and his CF team.

We expressed concern to the ER nurse that he was traumatized by the 3 attempts to place an IV in Myrtle Beach and that we needed the best of the best to place his IV line on the first shot.  The nurses came in, dimmed the lights and held a small flashlight right up to his hand and got the line placed immediately.  After doing blood draws for the lab, he was then started on some IV fluids because he was dehydrated.  Nathan continued to doze off and act extremely lethargic.

After a short bit, I observed an increase in nurse/emergency department activity.  One nurse came in with a blood sugar kit and wanted to re check his blood sugar because the lab had called and notified the department than Nathan's blood sugar was extremely low.  The finger prick verified that his blood sugar was (even lower) 26.  I wish I had counted how many nurses and doctors flooded his curtained room because they all swarmed and started drawing blood from his line and filling up tiny little micro test tubes.  Apparently they needed to get his sugar up immediately but needed to get his current blood sample to the lab before adding any glucose into his system.

They administered a bolus of glucose and his blood sugar went from 26 to 396, being tested every 30 minutes (many small painful finger pricks) to observe the decline of the blood sugar.

This is when a simple admission for IV antibiotics became more complicated.  Because he was so extremely lethargic, the doctor wanted to make sure he didn't have meningitis or encephalitis.  A spinal tap became number one priority.  I am happy that my father expressed his opinion that they should try to do the lumbar puncture under the same anesthesia as the picc line.  Initially the spinal tap was to be done awake without anesthesia, but the doctor on call in the emergency department managed to schedule everything including a brain MRI which may be deemed in the future.

We walked alongside his bed as they rolled him to the procudure room and I gave my written consents and watched as they transferred him to the procedure table, briefly waking to flash a cute litte Nathan smile.

Three hours later we were brought to recovery where it took quite some time to wake him.


Now, it is almost 2 am and I sit bedside, or actually on Nathan's bed.  Getting him to sleep this evening was quite the task.  I was overtired, I am not even sure if that accurately explains how tired I was and currently am.  He kept crying that he wanted to go home, that he is scared, that he is scared of the dark, that they are going to hurt him.  I am not sure who fell asleep first but I was next to him in bed holding him the entire time.

Why am I awake now?  He has been getting every single little finger and toe pricked hourly or half hourly and then they are concerned he isn't urinating enough.  Earlier in the evening they had to catheterize him to drain his bladder and do some urinalysis. I was told that he had until 1 am to further produce urine or they would have to catheterize him again.  This woke me straight up.  Like instantly.  It almost seemed like that was the easiest and prefered method for them to obtain a urine sample from a 4 year old at 1 am.  I wasn't having it.

I know he isn't fully toilet trained but I do know he would prefer to hold his urine over peeing in his diaper.  I explained that catheterizing him was not "the best option" that I would carry him to the toilet and I knew that holding him over the toilet would cause him to urinate.  She asked whether or not he would even stand in the bathroom and I firmly said I would hold him.  After disconnecting the blood pressure cuff from his ankle, the pulse oximeter from his toe, and the many cords attached to his heart rate monitors, I lifted him off the bed still completely asleep and whispered that he needed to pee and I was taking him to the bathroom.  Sure enough I held him over the toilet and he started to urinate.  The nurse caught his urine in a sterile cup and Nathan said "take me out of here" with his eyes closed and we wheeled his IV pole back to his bedside.

I am sure the finger and toe pricks will continue throughout the night.  He had infusions of three antibiotics before bed along with nebulized tobi and his normal oral antibiotics.  Other than that he has been getting continous glucose and saline.

Initial looks at the lumbar puncture in addition to him moving around and lifting/controlling his head look positive, not looking like spinal meningitis.  But the official results will take time.  His brain MRI showed possible chairi malformation, or "a protrusion of the cerebellum through the bottom of the skull (foramen magnum) into the spinal canal". (source)  This is not of concern at the moment but after googling, yes I know google can be dangerous, something caught my attention, "Other symptoms include difficulty swallowing, frequent gagging and choking..."

Now that I rambled for a bit and got some information out of my brain and onto "paper" I can try to snuggle back up to Nathan and sleep with hopes that we can move out of the PICU soon.



Wednesday, September 12, 2012

Hospital in SC

Just an update for family and friends: I don't have cellular reception but i do have wireless. we are in the emergency room in South Carolina. The orders were to admit Nathan for
IV antibiotics and a PICC line. He had had an IV placed after 3 attempts and is currently on IV fluids waiting for an infusion of 2 antibiotics.

We will be coming straight home tonight after getting out of ER. I'll update more when I can.

Myrtle Beach {Day 1}

We left New Jersey at 9 pm Sunday night and between me and my dad we drove through the night and arrived at our hotel at 10:15 am Monday morning.  The kids both slept until 6:30 am, so the ride could have been way worse.  We managed to check in early and I am so thankful our room was ready because I had not done Nathan's morning treatments yet.

We settled into our hotel room situated on the 6th floor, quickly unpacked, did Nathan's treatments and enjoyed a beautiful view.

Even doggie was super excited to be at the beach.

First priority on Nathan's list was to set up his Spiderman/Green Goblin toy.  It took him all of 5 seconds to claim the bed that he will share with Gappa Frank.

We made a trip to the store to stock our fridge and freezer with food for the week, Teagan had a meltdown of enormous proportions and then she napped.

While waiting for her to wake, we enjoyed some snacks {chips and salsa} and some wine on the balcony.

They had live music down below and it was so relaxing.

By the time Teagan woke up, it was not as hot down near the ocean so we enjoyed a little sand digging, wave crashing, and bird chasing.  It was beautiful minus the nasty flesh biting horsefly's.  After we had enough of getting bitten on the beach we rinsed off and swam in the lazy river {lazy ribbah - according to Teagan}, hot tub, and swimming pool.  Even after the hot tub, the outdoor pool was a perfect temperature.  I could have staying in all evening except we had to go up to the room to make pizza and do evening treatments, not to mention my dad and I were simply exhausted from the all night road trip.


The next series of photos are super special to me and probably even more special to my dad because this is Teagan acting just like me at her age.  This is her doodling in my dad's appointment book with a pen, unprompted.  There were times I would get to his appointment book with his business rubber stamps or even worse - an eraser.  There were days he didn't even know what patients to set up for because I would erase his appointments and replace them all with appointments for "Kelly".  She was my favorite person to make dental appointments for.

Friday, September 7, 2012

Nathan's 4th Birthday at McDonald's

A slideshow seemed like the only option for showing how much fun the birthday boy had at his McDonald's Party. No words needed really, the joy is evident on his face! For friends and family, I am going to try to get these into a Facebook gallery at some point hopefully today.