Joshua’s mental health challenges

"BRING TO THE LIGHT THAT WHICH IS IN DARKNESS" – EPHESIANS 5:11-14

It has been a very long time since I felt the need, or honestly had the time, to post an update on Josh. But, we have desperately been seeking answers regarding his mental health in recent times so I am summarizing the situation here in hopes of sharing with others that may have useful feedback for us. I also believe our loved ones will want to know what our family has been going through.

Josh has been in the throes of a mental health crisis for the past 4 months and struggles to make it through every day. He is having severe behavior & aggression issues that I can only guess are related to something physiologic. He has several extreme meltdowns daily with hours of screaming, uncontrollable crying, slamming doors, breaking things, etc. Then comes the physical aggression with pinching, grabbing, scratching, slamming of body parts in the car door, etc. This situation is unsustainable. There have been many days spent feeling desperate & helpless.

In the last few weeks Josh has knocked holes in our walls, shattered his iPad, torn pictures down, slammed countless doors, choked me with my own seatbelt while driving and other aggressive behaviors that have caused minor injuries to both me and him. Josh turned 10 on Sunday - he is already strong and only going to get bigger and stronger. What seems to give him the most sensory satisfaction is squeezing/pinching my upper arms which are constantly bruised and scratched now to the point I feel uncomfortable wearing anything sleeveless. Jen and I have taken to either constantly wearing noise cancelling headphones or escaping upstairs during Josh's tirades to lock ourselves in a room and put on loud music to distract ourselves. That is until Josh follows us and attempts to break down the door with his fists (picture the scene from The Shining without an axe). 

 

Josh's current psychiatrist in Athens has him on four different medications to get him to sleep. Sleep disruption has been a constant battle for Josh his entire life and we finally found a combination of drugs that had been working since 2019, however, we are back in a pattern of chronic sleep issues which seem to exacerbate the seizures that have picked up in the last year. I believe the increase in seizure activity is indicative of something else going on neurologically. Josh finally made it through multiple difficult diagnostic procedures including an EEG (normal) and a brain MRI on July 8th (results below).  

 

MRI results:

IMPRESSION:

1.Punctate T-2/FLAIR hyperintense foci involving right temporal white matter, corona radiata and posterior centrum semiovale, of uncertainclinical significance, may represent gliosis.

2.Otherwise normal MRI of the brain without contrast.

 

This MRI is showing some scarring and prior injury/insults to the brain. Based on birth and developmental history this is not concerning or something that needs to be followed as it is expected with traumatic birth and can be the cause of developmental delays.

Yeah... I am not understanding the MRI results or the neurologist' interpretation of them and we can't get an in-person appointment with CHOA Neurology until November. While Josh did have an emergency c-section at 37 weeks due to varying heart rate caused by his gastroschisis birth defect - I don't understand why scarring and injury to the brain would have occurred during the birthing process and also why it would not be something that is concerning or needs to be followed if it is, indeed, the cause of his developmental delay. Where are my brain experts??? Katie Prowell Anguish - I'm talking to you ;) 

Our amazing pediatrician is doing his best to help us with referrals to CHOA's Mental Health Clinic and trialing other medications (so far with little success, unfortunately). 

 

During Josh's last GI appointment on July 15th, he was incredibly angry and frustrated with being there. He was extremely upset & aggressive, then got strangely quiet & stared blankly at the ceiling. Then every bit of food or liquid came out of Josh's body in an intense trifecta of bodily fluids crashing on the hospital room floor before he started seizing. David had to hold Josh up off the ground while I got him cleaned up with the help of the hospital staff before we could lay him down to finish the seizure. It is a memory that will likely never leave me and I give major props to David who has a fairly active gag reflex that he was able to control while Josh vomited, pooped and peed all over him. 

After this dramatic seizure debacle, the GI docs' suggested we "follow-up with neurology about that". Thanks, I hadn't thought of that (insert facepalm)!

 

When Josh is not insanely upset, he can be extremely cuddly, giggly & docile. His psychiatrist recommended a long-term care facility as a potential next step if we are not able to stabilize his behavior at home which is unimaginable to us. 

 

Our brains are toast from lack of sleep and being screamed at for hours daily, our nerves are fried from the anxiety of anticipating the next meltdown and my own mental health has been desperately treading trying to keep my head above water. This season of life is H A R D, but we will keep swimming  against the current trying to get our Joshie back to his normal self.  

I will end this depressing update with some positive news - despite our intense fears that he would refuse, Josh willingly got on the bus and spent the whole first day at school today. Praise be!! 

Another year in the books for our Superman!

When I looked at the blog this week thinking about Joshua's upcoming birthday, I was astonished to see it has been a full year since I last posted - oops!  With his medical issues largely taking a backseat to the developmental stuff, I haven't felt the need to write as much since we have stayed at home and out of the hospital (giant WOOHOO) and finding out I was pregnant in January has kept me busier and even more exhausted than usual.  And I'll be honest, it is just harder for me to communicate about the autism and sensory processing issues we struggle with.  Dealing with the medical aspect comes pretty naturally with my science background, but the developmental and psychological issues are new territory for me and it is tough to admit to myself as each new milestone he "should" be meeting passes us by.

But let's focus on all the good stuff first and the amazing progress Joshua has made in the last year because there is certainly plenty to be thankful for and super proud of!  Since having his central line removed in March 2015 - in large part, I believe made possible by the clinical drug trial in Cincinnati - the major aspects of his Short Bowel Syndrome have radically improved.  He has steadily increased his oral food intake, lessened his dependence on hypoallergenic formula, and continued to gain weight and maintain it in the 50th percentile which is almost unheard of in a young SBS patient.  At GI check-ups which are now spaced out to 3 months instead of every 6 weeks, his team tells me to just keep doing whatever we are doing because it's working which is music to my ears!  The nutritionist hasn't even come in the room to see us in over a year (largely because we have disagreed in the past about what is best for Joshua and apparently my way was the right way!).  Joshua has continued to expand the types of food he will accept and is now down from 5 servings of high calorie formula a day to only two.

The three things we continue to deal with on a daily basis concerning his SBS diagnosis are frequent bowel movements, chronic abdominal pain, and food intolerances/allergies.  We are making slow, but steady progress with all three for which I am extremely grateful.  Joshua's bowel movements have decreased from 6-8 a day to only 2-3 a day which is an indication his intestines are absorbing more and this is the most important aspect of his progress with SBS.  The chronic abdominal pain is a real downer and I absolutely hate that he goes through this every day, but there is not a whole lot that can be done about it unfortunately.  We don't even know to what extent he has pain since he is nonverbal and can't describe it to us.  I do know that his belly wakes him up frequently and I can hear and feel his belly churning as he whimpers, cries, and hugs me.  It's terrible to watch him go through especially because I feel so helpless to do anything other than comfort him and tell him it will eventually go away.  I was finally able to convince his doctor to start him on a centrally acting nerve pain medication at night - neurontin - about 7 weeks ago and that is helping quite a bit to allow him to sleep through the night.  We go back to Egleston next week for a check up and will be discussing whether a different medication or a higher dosage is appropriate.  The food intolerances are the one aspect that I am not sure he will ever fully move past, although he is able to tolerate small amounts of dairy at this point which is awesome because pizza is one of his favorite foods.  Gluten and beef are the other foods we avoid.  Gluten causes bloody diarrhea and beef - even just beef broth - causes profuse vomiting so those are both off the table for the foreseeable future.  And that's okay, we can work around those limitations fairly easily since gluten-free foods have come a long way in recent times.  Joshua's favorite foods are homemade pina colada popsicles, gluten-free pasta, coconut yogurt, gluten-free pizza, apples, and french fries with lots of ketchup.

One of Joshua's greatest accomplishments in the last year has been starting preschool and crushing it, I might add!  I was SO nervous at the beginning of the school year, but Josh proved my fears were unfounded almost right away.  By two weeks in, he was riding the bus and loving it.  I cannot begin to describe what a relief it has been for me to send him to a place he enjoys going and I know he is getting the instruction, therapy, and social interaction he desperately needs.  It has been life changing for the whole family and I cannot wait for school to start back in 10 short days!  Much to my surprise, I have been thoroughly impressed with Clarke County's special needs preschool program and I feel very fortunate that we have this resource available to us.  It seems to be the best program of its kind in all of the surrounding counties and I cannot help but marvel that it's not a coincidence that we are exactly where we need to be even though we contemplated moving many times over the years.

So now on to the developmental stuff that is trickier for me to talk about.  Joshua has autism, of this I have no doubt.  Where exactly he falls on the spectrum is hard to know.  I certainly wouldn't label him as being severely autistic or low functioning, but beyond that it's difficult to describe and predict his future potential.  These are entirely subjective labels anyway that mean different things to different people.  While his medical issues are much more concrete, autism is anything but.  The two main things that land him on the spectrum are his communication difficulties - he is completely nonverbal at this stage - and his sensory issues which are harder to pinpoint.  Josh makes terrific eye contact, he is super affectionate (especially with me, I am the lucky recipient of many hugs and kisses every day), and his receptive language skills (what he is able to understand) are on par with his peers.  His expressive language skills, however, are on about a one year old's level.  Even though he is able to verbally form many vowel and consonant sounds, he is unable to put these sounds together to form words.  His speech therapist describes his issues as "motor apraxia" which in layman's terms means part of his brain understands what is being asked of him, but the part of the brain that sends commands to his mouth (and other parts of the body) misfires so he isn't able to complete the requested task despite trying very hard to.  I can't begin to imagine how insanely frustrating this is to an intelligent and wanting to please child.  Picture going through your day having so much to say and express to others, but having a piece of duct tape across your mouth and your hands tied behind your back.

We have tried multiple different techniques to help Joshua communicate his needs and desires.  Sign language has not been very effective, I believe because of the same reason he has difficulty speaking words.  His motor apraxia prevents the right synapses from firing and communicating to his hands the different signs he needs to form.  The end result is he learns one sign and when we try to move on to the next sign he will eventually learn that second sign, but no longer use the first one he originally learned.  So now he uses one universal sign - clasping his hands together in front of his chest - to communicate anything he wants.  We also tried a picture exchange system through a program supported by Georgia State University last summer.  He picked up on the concept pretty quickly, but it was hard to move past the initial 3 choice scenario to anything more substantial.  He lost interest and just started bending up the picture cards and eventually pulled the velcro board clear off the wall.  Our latest attempt - a speech generating device (SGD) - is looking much more promising so far.  The SGD is a small tablet set up with special software made up of icons that have a picture and word.  When Josh touches the icon, the word is spoken and the software navigates to a new page where another list of icons is displayed.  Since he absolutely loves electronic devices and is a whiz on an iPad, the SGD fits his preferences very well.  His new augmentative communication therapist was amazed at how quickly he picked up on the concept and very quickly started stringing 2-4 words together.  I was not at all surprised, I knew he would catch onto it in no time.  His favorite phrases to tell me on his "talker" are: Eat Popsicle, Eat Pizza, and Play iPad.  We are extremely optimistic this new method will provide Joshua the ability to communicate all sorts of information both at home and at school.

With alleviating Josh's frustration of not being able to communicate, we are very hopeful this will help lessen the number and severity of his meltdowns.  Although they really aren't very frequent compared to many kids with autism, the meltdowns he does have are traumatic for everyone involved.  We are still learning the warning signs and triggers that precede a meltdown.  Often times it involves sensory overload in a crowded place, but he has also had them at home sometimes without any signs that we can tell.  We also deal with some aggressive behavior in the form of biting, hair pulling, and pinching, but this is not all that common comparatively speaking.  Josh's occupational therapist has helped us identify a simple move that gives him the sensory stimulation he requires to avoid most of the aggressive behavior - we simply interlace our fingers with his using both hands and squeeze.  It's amazing how effective this simple move is and Josh now offers up his hands to most of the people he encounters for a quick squeeze.  It's his version of a friendly handshake, often given with a big smile.

Joshua's interests have continued to evolve and are now fairly limited to a short list.  He hardly plays with toys and does not watch any cartoons.  His loves include spinning, swinging, chewing on just about anything, swimming, flipping through certain books and magazines, and watching commercials with logos on YouTube.  His favorite TV shows are Wheel of Fortune, Jeopardy, and the Braves.  Mainly because they have "sponsored by" segments that display 3-4 logos in a row which really get him excited and squealing.  Josh also likes watching replays of the Dawgs on the SEC network so he's learning early to share our love of college football - smart boy!

The most frequent question I get lately is whether Joshua is excited about being a big brother and if he understands that a new baby is on the way.  Honestly I have no idea, but I don't think he really gets it.  He knows my body has changed and I say "baby" every time he pats my belly, but it is such an abstract concept to try to explain to him and kids with autism are typically very literal in their interpretations of things.  He hangs out in the baby's room some and checks out the crib and we look at pictures of babies in magazines.  I don't think it will become a reality until he actually meets his sister.  I would be lying if I said I'm not nervous about that introduction.  Joshua is a mama's boy and I fully expect there to be jealousy and frustration when I am not able to pay as much attention to him as before.  I'm sure it will work itself out eventually, but it could be a rocky start to siblinghood.

My precious miracle baby is turning 4, I can hardly believe it!  He continues to amaze and inspire me every day.  I know the future holds great things for him and I feel so privileged to be on this incredible journey with such a beautiful soul, my sweet Joshua.

Joshua is turning 3!

Joshua turns 3 today - I can hardly wrap my head around it!  He has made so much progress this year and we are so optimistic about what lies ahead for our little Superman.  I know it's been a ridiculous amount of time since I have updated this blog, let's get to it.

We started 2015 trying to accept that Joshua would need surgery for a g-tube insertion in order to wean from his CVL.  David and I both felt uncomfortable with the decision and after delyaing surgery, we ultimately declined the procedure against the recommendation of our GI team (mainly the nutritionist).  Boy, are we so thankful and relieved we listened to our gut and didn't go through with the g-tube.  It would have been a huge mistake for Joshua!  Encouraging his eating by mouth is so important for long term progress and I have always thought he would eat more as his bowels were able to absorb more.  However, getting his CVL out remained of utmost importance because of the high infection risk.  It was a difficult risk vs. benefit assessment.  

After deciding to stick with status quo and not go with the g-tube, in mid March our hands were pushed when I discovered blood dripping from a small hole in Joshua's central line.  We knew for months that a weak spot was forming in the line where it would naturally twist and weaken the tubing.  I attached multiple adhesive strips on both sides of the kink trying to keep it straight and it lasted for much longer than his nurse and I expected, but it eventually broke at the thinnest spot.  When the regular clamp wasn't strong enough to stop the blood flow from the thin part of the line, I struggled with what to clamp it with to staunch the blood.  I could use hemostats, but I knew they were so big it would bother Joshua from a sensory standpoint and he would keep grabbing at them making things worse.  I had called David to calmly inform him we would be on our way to the CHOA ER in a few minutes when he suggested a binder clip that was currently holding a bag of chips closed.  Ta Da!  Once the flowing blood was clamped off, I could focus on packing both of our bags before rushing him to Decatur.  

Joshua is a model patient, as long as he has his iPad, naps, and bananas.

  

We had to decide with the GI team and the surgeon whether the current line could be repaired, if he would need a new line placed, if they would trade the line for a g-tube, or if they would give him a chance with no implants at all (our strong hope and desire).  We were overjoyed when the GI doc reported we would remove the line since it couldn't be repaired again and give Joshua a chance without a CVL or g-tube.  This is really happening!  Of course, we had been here 19 months before the first time they let Joshua try without a line.  It was a dismal failure and set us back many, many months.  Nothing was guaranteed this time around either.   I have some PTSD-like memories of the time his line was prematurely removed in 8/2013 and we lived with 12-14 waterfall poops a day and 10% loss in body weight in 5 weeks.  I was excited and frightened, optimistic and stressed, hopeful and anxiety-ridden.  You get the picture.  I couldn't let myself believe this time would be succesful lest I relive the crushing disappointment and regret from the first time around.  

Joshua went into surgery on St. Patrick's Day to remove the line and we haven't looked back since!  Although we struggled to get his stools stable for the first 6-8 weeks, our GI team eventually worked out the right dose of Imodium and maintenance antibiotics that he can live with.  It is hard to put into words what a change this has been for our family's daily schedule.  No longer do I need to prepare IV fluids every night after dinner, hook Joshua up before bedtime, stress over his every move at night when he was infusing and could get caught up in the IV lines, schedule and wait for deliveries of critical supplies every week, change his sterile dressing whenever necessary, unhook him from the IV fluids every morning, maintain a constant traveling supply of a crazy amount of medical supplies, and worry every time Joshua grabbed for the line or clamp that irritated him constantly.  Wow, what a difference this has made for all of us! 

Even after a lengthy ear infection and his first round of strep throat, Joshua has continued to maintain his weight in the 50th percentile since having the line removed.  He is doing great in this regard, but has to keep up with a pretty hefty daily calorie intake.  He continues to get the majority of his calories from a hypoallergenic form of Pediasure, but the extra calories he eats in solid food (bananas, cereal, chicken, rice, tortilla chips) was what put him in the clear to have the line removed.  Joshua recently beccame enthusiastic about eating with a spoon which is huge progress considering early feeding therapy attempts landed him with an oral aversion to spoons - he would gag just watching me and David eat from a spoon.  Often times with Joshua the best therapy is lots of practice at home with Mom in a natural setting, not a contrived therapy environment.  

As Joshua's medical issues have become less immediately threatening, our priority has shifted to his sensory processing issues and speech/social delays.    I am told his receptive communication level is about average, but his expressive communication is far below a typical 3 year old.  He has still mastered just one word - Mama - even though he uses many vowel and consonant sounds.  Despite his lack of verbal skills, Joshua is able to get his needs across pretty easily.  He will grab your hand and take you to whatever he wants most of the time.  We also participated in an 8 week Visual Supports program through Georgia State this summer in which we were provided with a picture exchange system that Joshua picked up on right away.  It involves small picture cards that velcro to a series of boards.  He can pull the card from the board and hand it to me to get what he wants.  It is very effective for things that are immediately available, but the concept of setting up the daily schedule with a series of cards (the ultimate goal) is still a little abstract for him.   

Give the kid an iPad and you really get to see what he's capable of.  I have watched him count to 10, identify colors, pick out shapes, match tiles, identify animal sounds, and do puzzles in certain apps he likes.  But try to get him to do those things outside of the iPad as part of an assessment and you get squat.  So I'm not putting much stock in the testing performed by the school system to determine his eligibility for special needs preschool.  Clearly he is capable of much more than he shows in a contrived testing environment.  The up side to that is he is always eligible for any program we try to get him into.  Joshua will start at the Clarke County Early Learning Center in a few short weeks!  Since he will be the youngest student in the school, the decision was made for him to start with just 3 hours, 3 days a week which I think will be a good routine for him.  He will be in a class of 6-8 kids, most of which have special needs.   He will be getting multiple hours of speech therapy and OT a week which will complement his existing therapy schedule in Watkinsville.  I am worried that Joshua will struggle with the change in routine at first, but I know being around other kids his age is the best possible thing for him and the fastest way he will learn.

Although Joshua has meltdowns in certain public situations like big stores, malls, and now airports, he generally does quite well with getting out and about.  He loves going to the gym with me, restaurants, and the grocery store to get more bananas.  But try to take him into Target or the mall and he turns into a screaming, hair pulling, biting badger.  I have a lot to learn about sensory processing issues and how this effects Joshua's perception of situations.  It's a bit of a foreign concept for me still.  From the books I've read, I understand Joshua is constantly bombarded with sights, sounds, and smells that are hyperstimulating which can cause physical pain and anxiety that triggers a meltdown.  Just the fact that he can deal with so many different situations relatively well is another reminder of what a warrior our little guy is - he is literally fighting to make it through every day. 

He is simply amazing.  And he loves cars.  Happy Birthday, sweet baby, you deserve the best life has to offer!

  

Bringing an end to Cincinnati & 2014

Well, three months have gone by since I last posted and the year is suddenly coming to an end.  In some ways it seems like it has flown by - maybe because we have literally been flying the entire last half of the year, but mostly it feels like one of the longest years on record for me.  I will gladly bid 2014 adieu.  

The main reason for not posting is I was instructed by the staff in Cincinnati that I could not publicly post about any results while the trial was ongoing and even afterwards when the data is being analyzed.  I signed a bunch of paperwork at the start of the trial and apparently I agreed to this stipulation in all the fine print - oops!  I must be very careful about any information I divulge so I will be focusing on non-trial related news of which there is plenty. 

What I can say is I know getting Joshua up to the top notch Cincinnati Children's Medical Center was well worth it, regardless of the results of the drug trial.  I would definitely do it again, especially with our super helpful Aunt Karen up there to help us every step of the way.  She was amazingly supportive and made the trips enjoyable with home-cooked meals and lots of sightseeing.  Joshua paid for her services with many hugs and sincere laughs and smiles.  I'm pretty sure Aunt Karen thought she got a pretty good deal! 

As every year of Joshua's existence has been, this one was filled with highs and lows with many bumps in the road.  We made it through some scary episodes, but I feel Joshua is in a much better place now then he was in the beginning of 2014 from a medical standpoint.  He is basically off all maintenance antibiotics and we have a clear plan for weaning from his IV fluids in 2015 with the goal of removing his CVL as soon as it is safe to do so.  Unfortunately, the plan involves a hole in his stomach with the surgical insertion of a g-tube for feeding and rehydration.  I had desperately hoped to avoid this since Joshua has managed to make it so long without one which is unique for his condition.  If we ultimately get to trade the CVL for the g-tube, we will take it since the CVL has so much more infection risk associated with it.  The g-tube will allow us to provide bolus feeds during the day or continuous feeds at night along with the ability to provide extra fluids for rehydration when needed.  While transitioning away from the IV fluids through the CVL, not having a means of giving Joshua extra fluids would mean many, many hospital stays in order to get a peripheral IV - something none of us want since hospital stays are very difficult on the whole family.  So the g-tube is necessary for multiple reasons, I am just having a tough time accepting my baby going through yet another invasive surgery even if it is for the better in the long run.  Hugging him and saying goodbye as he is taken back to the OR by a stranger gets harder every time, no matter if the surgery is considered "routine".

We made it through another terrifying central line infection in April caused by the nasty bacteria Klebsiella.  The fever from this infection brought on a febrile seizure that landed Joshua in the PICU for the first time.  Boy, I sure do hope we never see the inside of those walls again.  After spending one night watching and listening to Joshua's poor little neighbor code seven times, I was exceedingly grateful to leave with nothing worse than a short seizure and sepsis.  I am reminded over and over again every time we are admitted how fortunate we really are and how much worse Joshua's situation could be.  I am also made to remember those things that are important versus others which are not.  If your child was in the hospital and their condition was hanging in the balance - would you worry/stress/fret over that circumstance, detail, or plan?  If the answer is no, then it's really not that important so give yourself and your family a break and don't get your panties in a wad over it!

The real theme of the year in my opinion has been Joshua's developmental delays, rigorous therapy schedule, and the eventual Autism Spectrum diagnosis he was given in October.  And I thought I already had as much worry and anxiety as I could for our little superhero - wrong!  I can't describe how much of a blow this was to me and David.  We know so very little about how to help Joshua with this, but we will learn.  Joshua is currently in Speech therapy, Occupational Therapy, Hippotherapy (horse therapy), Feeding therapy, and will be starting in an ABA program at UGA the second week of January.  He is using sign language consistently and is able to communicate with us pretty effectively even with only one spoken word.  His therapists continue to remark how smart he is and how quickly he picks up on things and I think speech is right around the corner. 

The goals for 2015 will be continued early intervention for Mr. Joshua's delays and autism, as well as removal of the CVL after the g-tube is stable.  He will also be starting at the special needs Pre-K in August for 3 hours a day (terribly exciting and frightening at the same time).  I hope for less hospital admissions and more socialization with children his own age.  I pray for patience for me and more fun times with my spouse.  I give thanks for our extended families and dear friends that have carried us through the toughest times and provide us an outlet when we need it most.  May the very best be in store for you and your family in the New Year!

Cincinnati Trips 2-6 (Oops!)

Between the incessant traveling, the constant appointments, the minion always occupying the iPad, and dumb exhaustion, I have neglected to keep up with the weekly blogs posts I envisioned at the beginning of this journey.  I'm shooting for monthly posts at this point.  So before I am called away to mommy duty, let's hit the highlights of the last 5 whirlwind weeks (yeah right, this actually took me 3 days to finish).

Trip #2 on 8/27/14:

This was the first of four visits where Joshua and I traveled alone.  This was a daunting task, but I had learned a few things from the first trip that helped me pack and prepare better for travling without a pack mule (my Dad or husband).  Joshua continued to impress me with his traveling skills and remarkably good behavior on the plane.  

  

This was considered the Baseline visit which included the first dose of Gattex and three yucky blood draws to go along with it.  Our morning started bright and early with an 8 am appointment where he promptly began the first of three pokes in the arm over the next 8 hours.  The process did not go well for the poor guy and he was pretty traumatized after the first round.  Then he was treated to the first injection of Gattex and the clock started ticking down the hour until his next blood draw.  

Aunt Karen (my constant and greatly needed helper) and I were able to escape with Joshua for half an hour to give him a breather before the second round.  We found our way to an outdoor playground that was perfect for distracting the little guy for a bit.  Until a Child Life employee informed us the playground was closed due to the heat and we should have seen the signs.  Well I had seen the signs, but since it's 10 am, in the low 80's, and the playground is in the shade, I thought they were pretty silly.  Because we're from Georgia where you wouldn't step outside for half the year if your qualification for high heat is a balmy 83.  After a stern talking to, I was given "special permission" to stay out there for 20 minutes.  Jeez, these folks take stuff seriously at Cincinnati Children's!

After a relatively uneventful second blood draw, we had a 5 hour window of time to explore the hospital, have a long lunch in the cafeteria, and a nap with Joshua sleeing on top of me in a hospital bed.  Then came the last and most traumatic arm poke before we were allowed to escape to the airport to begin the long trek home armed with a week's supply of Gattex.  

 

 I'm finally home!

Trip #3 on 9/2/2014:

This was a relatively easy visit compared to the last two.  The appointment was at noon instead of 8 am which made for a more leisurely morning and it was only 90 minutes long instead of 4-8 hours.  Most of the appointments will be like this one, thankfully.  I have to bring a urine sample from Joshua and the Input/Output diary I am responsible for keeping daily.  Joshua has vitals measured, including the all important weight gain, a blood sample is collected from his line, a physical exam is performed, and then we are basically free to go after speaking with the doctor, dietitian, nurse, and coordinator to collect the next week's supply of Gattex.

Trip #4 on 9/8/14:

After a year of not having a single reduction in Joshua's TPN and lipid volume, visit 4 brought the first decrease we have been anxiously waiting for!!  Joshua's TPN rate was reduced by 10% - woohoo!  Dr. Cole pointed out that 10% only amounted to 50 some odd mL of fluid, so it wasn't anything to get too excited about.  You bet it is!  It's a step in the right direction and we are very grateful for it.

Trip #5 on 9/15/14:

This visit Joshua had lost a little weight after the reduction in TPN volume so the rate was not reduced any further.  On a positive note, Joshua started reliably drinking a smoothie concoction I make for him with banana, coconut milk, peanut butter, and coconut oil.  I hope I will be able to sneak in other ingredients that my picky little eater normally doesn't approve of!

Trip #6 on 9/22/14:

This week David had the privilege of accompanying us so Aunt Karen was able to hit the beach with family.  This visit was another long appointment with three blood draws spaced out over six hours.  I was really anxious to get past this visit since it signals the halfway point, we get to start going every other week instead of every week, and it's the last long appointment that requires all of these yucky blood draws.  

I had bragged to David about what an angel Joshua had been on basically all of the previous flights, so he decided to turn into a Gremlin on the flight out just to prove me wrong.  David was sitting in the row in front of us and pretended not to know who the screaming child was.  All of our fellow passengers and crew members were immensely relieved when the monster finally passed out.  The unfortunate lady sitting with me and Joshua told me at the end of the flight what a good Mom I was - if you only knew what I was thinking while the little dude was fussing his brains out, you probably wouldn't compliment me.  ;)

The day picked up once we got to the hotel and were able to grab a bite to eat before playing outside!

  

    

Then the evening got really interesting, as I took a spill stepping off a small step while trying to take pictures of Josh.  I rolled my ankle before deciding it would be better to fall into the grass rather than tear my ankle up.  I writhed around in the grass for 15 minutes moaning "Oh God" while Joshua decided I must want to wrestle and crawled all over me.  Much better than him taking off for the road that was 30 yards away, fat chance of me being able to keep up with him given my current state.  

I managed to grab a picture in mid-air as I tumbled to the ground.  The next day after being on my feet for 16 hours, my ankle was in pretty rough shape and I had to stuff hospital gloves in the back of my shoes to keep them from rubbing skin off my heels.  Am I "styling and profiling" you ask?  Nah, more like "limping and blistering".  

The long appointment went surprisingly better than the last one, Joshua didn't make a peep during the first two blood draws.  The only tears came when he was awakened from a 20 minute nap to a tourniquet being tied around his arm before the final poke and even those were very brief.  He is such a trooper!  

  

Somehow we managed to make it to the famed Cincinnati Zoo for a few hours before our flight.  I tried to ignore the resistance from my ankle as we walked around trying to show Joshua all of the animals.  I think he noticed about 4.  

 

The great news from this visit is Joshua had gained a significant amount of weight - yippee!  I believe this is because he recently started accepting his peanut butter and banana smoothies.  Now the dietian wants me to add raw spinach to it and see if he will still accept it.  The jury is still out on that.  Because of his rate of weight gain, the doctor approved cutting out four days of his lipids so now he will just require lipids three days a week.  That is so awesome because it's the lipids that cause eventual liver damage and it reduces the time it takes me to prepare his IV fluids almost in half for four nights a week.  More great progress!

In non-Cincinnati related news, Joshua has been seen the last two weeks in a row and will be seen again next week at the Marcus Autism Center.  The first appointment was a consultation with a nurse practitioner to decide if he should proceed to the pre-test with the psychologist.  We had the pre-test with the psychologist this week.  This was after being told to my utter amazement that the next available appointment was 8/28/2015.  Polite persistence paid off and I was called back that afternoon with a cancellation for this week.  I can't imagine having this autism evaluation hanging over our heads for the next year, I am just ready to know one way or the other whether these Marcus people think he falls on the spectrum so we can get him additional services if he needs them.  Joshua's 4 hour evaluation is on Monday at 9, but only a helicopter would be able to get us through Decatur traffic to make it there on time.  We should have results that afternoon. 

And to end this post with a positve twist, check out www.onlineathens.com on Sunday to see an article in the Athens Banner Herald about Joshua and his paintings!  We fit in a session with a reporter and photographer this week and it will run on the front page on Sunday (underneath UGA football coverage, of course).  I will post a link when available.  The link to Joshua's paintings is:  http://growingupfolden.blogspot.com/p/artwork-by-joshua.html

Sending love and hugs to all the Joshua supporters out there!!

xoxo

Joshua & his Mama

Cincinnati Trip #1

Well, we made it home safe and the trip went off without a hitch for the most part.  Joshua handled the traveling so much better than I expected, he is such a trooper!  He was scared of the crowds and the TSA experience to start out with.  We made it through Security with Joshua's IV fluids and medical supplies with surprisingly little trouble and Joshua perked up once we got on the train to the concourse.  We were able to pre-board the plane and Joshua was seated comfortably in a window seat where he promptly fell asleep while everyone boarded the plane and took off.  I couldn't believe he slept through the take off and most of the plane ride!

 

While I was checking into the hotel, I assumed Joshua was crawling on the nearby couches since this is a favorite past time and I could see the top of his head.  When I rounded the corner of the couch, this is what I found:

 

And, boy did he have fun seeing himself in his first full length mirror as soon as we entered our hotel room!  Within a few hours we were being whisked away to Aunt Karen & Uncle Jeff's house for a lovely evening.  Joshua was able to play outside in a backyard and we were able to enjoy a yummy home cooked meal.  It's extra nice to have family close by at our new home away from home!

The next morning started out early since the shuttle to Cincinnati Children's left at 7:30 to make our 8 am appointment.  Crystal, our do-it-all Clinical Coordinator, met as the door and led us through the maze that is CCHMC.  I was supposed to bring a urine sample and had been sent plastic bags that are supposed to stick around his little wee-wee inside the diaper.  Naturally, Joshua wanted nothing to do with this and kept pulling them off before I could get the diaper secured.  He also wasn't complying with supplying a stool sample, that is until the doctor decided to do a rectal exam to collect the sample.  Joshua promptly let one loose thirty seconds later and we finally got the urine sample at the same time, too.  Smart kid.  

Dr. Cole and his staff assured us Joshua is an excellent candidate for Gattex, they fully expect he will be able to tolerate more feeds, his stools will be thicker, and his appetite will naturally increase due to his body being able to absorb more nutrients.  He gets to start the drug next Wednesday, 8/27 when we go back for our next trip since this week's trip was the screening visit.  Joshua had some blood drawn and then had to make it through an EKG before it was time to head back to the airport after a quick lunch in the cafeteria.  

 

Joshua fell asleep on the ride back to the airport and I managed to get him out of the car seat, hold him on my shoulder, and navigate curbside check-in.  The little guy only slept for 5 more minutes after I found a nice comfy counch for him.  Then it was time to chase him around the concourse, riding escalators & elevators, and trying our best to keep him from running in front of every single person in the airport.  

Oh how I wish I could say the flight back was as uneventful as the day before.  In true Joshua style, he pooped twice before the fasten seatbelt sign was off.  The first time the nice gentlemant next to me allowed me to change him right there in the seat.  The second time... well, let's just say the first sign I had was finding poop on the seatbelt - never a good thing.  As I trekked all the way to the back of the plane carrying Joshua and getting poop on my arms, I contemplated how I was going to change his entire outfit in the airplane bathroom.  Ever tried to lay a child down in a lavatory?  Ain't happening!  Thankfully the last row was empty and the sweet man sitting in front of us didn't mind the mess and smell of a head to toe outfit change - socks and all.  After that episode we couldn't make it back to our seats because the beverage cart was blocking our path so after more stepping on toes and knocking people's shoulders with the diaper bag, we made it back to the poop changing row where we stayed (lacking all electronic devices) for the remainder of the flight.  Joshua finally had enough climbing on me like a monkey and passed out in my arms through the landing, disembarking process, and woke up on the train to baggage claim.  

I know from the pictures it looks like he slept a lot, but that was the only time he slowed down enough for me to snap a shot!  For the 36 hours we were gone, he actually only slept about 10 hours total. The other 26 hours my Dad and I were chasing him around unless we were lucky enough to strap him in a seat of some kind.

In other news, we spent all day Wednesday at CHOA for a Hematology visit at the AFLAC clinic and then had to hang around for a few hours until our ultrasound appointment that afternoon.  The ultrasound showed Joshua's blood clot is gone!  But, it also showed a narrowing in the subclavian vein so the hematologist recommended he stay on a prophylactic dose of Lovenox which is one injection a day instead of two.  So that's a little progress! 

Today we visited an allergist in Athens for Joshua's initial skin testing.  He passed all the skin challenges, and combined with his previous blood testing, we can now confidently rule out anaphylactic allergies as a problem for Joshua - woohoo!  The not so good news is he definitely suffers from allergic collitis which is a tougher to diagnose condition.  We now have a referral to a specialist at Scottish Rite and the advice to see the Allergy Clinic in Cincinnati which is apparently top notch.  One more thing to add to our to do list while we're traveling to CCHMC.

Until next week and Trip #2...

Joshua's Short Gut Journey to Cincinnati

As we prepare to embark on a 16 week journey to enroll Joshua in the Gattex drug trial at the Cincinnati Children's Hospital Medical Center, I cannot help but reflect on what has brought us to this seemingly extreme option.  I am quite nervous about traveling with Joshua taking 11 round trip flights between now and Christmas.  I also hope to provide an explanation for why we are subjecting fellow travelers to Joshua's antics if any of them happen to make it to the blog (please forgive his ear-piercing squeals and frequent fussing at non-favorite cartoons; I promise to have plenty of snacks and every portable electronic device I own fully charged before takeoff.).

So here we go, a look back at the last two years since sweet Joshua joined our family and changed our lives forever.

March 19, 2012:
We received devastating news at our 18 week ultrasound.  The news it is a boy was completely overshadowed by the unfortunate diagnosis we received, a relatively rare condition called gastroschisis.  This is a type of abdominal wall defect where the abdomen fails to close leaving a small hole that allows internal organs to be outside the baby's body floating in the amniotic fluid.  There is a range of severity for the condition which cannot be fully known until the baby is born.

July 31, 2012:
After a relatively uneventful pregnancy given the circumstances of our son's condition, Joshua David Folden was born via semi emergency c-section at 37 weeks after his heart rate became erratic and the inducement process made things worse. It was a bizarre and frightening experience, but I knew the end result was worth it - our baby would soon join us!  Joshua was born at 10:37 pm weighing 6 lbs. 4 oz. and 18" long.  Hearing him cry as he was pulled from my womb was the most anticipated, amazing sound I can imagine (even as I turned my head and vomited profusely from the anesthesia).  After all the worries, concerns, tears, and sleepless nights fearing for my little boy... he is here and he is alive!  My goals after finding out about his condition were accomplished: he made it past 37 weeks and weighed more than 6 lbs.  I know have given him the best shot I can at a healthy outcome - now the rest will be left to God, Joshua, and the talented medical staff at Children's Healthcare of Atlanta.  

August, 2012:

Joshua was immediately whisked to CHOA Egleston after birth for abdominal repair surgery and recovery for gastroschisis.  He had a primary closure at the bedside and was recovering more quickly than anticipated.  He proved what a little fighter he is and our hearts melted as we were first allowed to hold him.

Joshua moved right along with having the breathing tube removed, gut rest to allow the bowel to heal, and once allowed - continued to steadily increase his milk intake.  So much so, that we were being prepared to be discharged on August 31st.  Then tragedy struck the night before that set off a devastating 48 hour cascade of events that will forever affect our lives.

September, 2012:
To keep it brief, Joshua suffered an extremely rare intestinal malrotation with volvulus that resulted in blood flow being cut off to sections of his bowel which then turned gangrenous.  Even after emergency surgery was performed and the gangrenous tissue that used to be half of Joshua's small bowel was removed, he was gravely ill and barely escaped with his life.  We were told by the neonatologist he had a 50/50 shot of making it through the night.

In true Joshua form, he battled through it and another surgery the next day to place an ostomy in his jejunum (second portion of the small intestine).  Joshua spent 5 weeks with an ostomy before having the takedown surgery on 10/4/2012 - another day that is cemented in my head forever.

October, 2012:
The ostomy takedown surgery revealed strictured, useless tissue below the ostomy down to the colon and Joshua ended up losing the rest of his ileum and the all important ileocecal valve that separates the small bowel from the colon.  He now officially has Short Bowel Syndrome and a host of long term problems that come with loss of half of your GI tract.

In the short term, however, we battled a truly frightening and hideous MRSA wound infection after the last surgery that once again, almost took Joshua's life.  His heart rate was sustained in the 240-250 range for hours during one particularly bad episode and I literally thought his heart would give out.  It took over a month of daily cutting and silver nitrating the wound with no anesthesia to eradicate the MRSA.  Joshua was on isolation precaution for months which meant he couldn't leave the room and anyone that came in had to be masked, gloved, and gowned.

November, 2012.
After a miserable six weeks since the last surgery, we finally start to make progress with feeding.  As we reach the end of the month, doctors actually start mentioning the big D word - discharge!

December 11, 2012.
The day has finally come!  After 131 days and nights in the NICU, we can take our baby home for the first time.  I only have to learn how to prepare and administer his IV fluids every night, keep up with his complex medication schedule, pump all the breastmilk he needs, change the sterile dressing over the PICC line, observe him for sign of infection, malabsorption, or any other sign of distress and the list goes on.  At the time I thought we were on the downhill slope of battling Short Bowel Syndrome.  Oh, how naive I was!  My mind was protecting me, I guess.  If I had any clue how difficult our struggle would continue to be once we got Joshua home, I don't think I could have handled it.

January 2013 - present
I could write a novel about the difficulties and triumphs Joshua has been through, overcome, and continues to struggle with.  Short Bowel Syndrome is a complex condition and missing your ileocecal valve leads to chronic issues with bacterial overgrowth and other problems.  Although the doctors initially were confident Joshua would have his Central Venous Line (CVL) removed and be off all IV fluids by the age of 2, we did not meet that marker and are quite far from it since his rate of IV fluids has not decreased in almost a year.  Joshua has struggled with food allergies (some yet undiagnosed, I suspect), bacterial overgrowth, life-threatening central line and bloodstream infections one that caused a febrile seizure, line breaks, a blood clot requiring twice a day injections for 6 months, an additional abdominal surgery for lysis of adhesions, multiple colonoscopies, liver damage from the IV fluids, developmental and speech delays from all the time spent in the hospital, and the worst - chronic severe belly pain that wakes him up many times a night and prevents him from resting normally.

I believe we have exhausted our options in Atlanta since we have been going to the only GI clinic dedicated to Short Gut in the state and have sought out the specialists in the area.  The time has come to take what some may consider an extreme step, enrolling Joshua in an experimental drug trial requiring 11 round trips from Atlanta to Cincinnati in 16 weeks.  The drug is called Gattex, it has been approved for use in adults for a decade, and it is supposed to increase growth of the mucosal lining in the intestine which should help Joshua's bowel absorb more food via mouth and decrease his dependence on IV fluids through his Central Venous Line.  We will also have the opportunity to start fresh with a new world renowned team of doctors.  I am so hopeful this is the step we need to get Joshua progressing in the right direction and find a resolution to this chronic belly pain.

Many people have asked about the travel costs associated with the trial.  The pharmaceutical company thankfully covers two airline tickets and one hotel room for each trip.  We will invariably incur costs on things like transportation to the airport, parking, extra baggage fees for all of Joshua's medical supplies, a third ticket for the times Dad can come, and other things that always pop up during travel.  Not to mention me missing more work, which hardly seems possible given my very limited hours during the last two years.  We have no other good option at this point so we have to make it work.  My Dad and David's Mom have each generously volunteered to accompany me on one of the first two trips since David is unable to go due to his school schedule.

We have been incredibly fortunate to be supported by wonderful family, friends, and employers during this life altering journey which has made maintaining a semblance of the life we used to know possible.  We are immensely grateful and know we will continue to feel the outpouring of love and support as we take on this latest challenge for Joshua!  I will do my best to update regularly about our traveling journeys and, hopefully, all the progress Joshua is making on the new drug!!