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  Rainbow-Colored Grass

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Just the thoughts millin' around in my head...random-the good, the bad, the ugly.
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Autism Parenting Magazine
Published Articles:

Issue 54: Ways to Survive ASD Parenting and Stay Thankful
Issue 58: Winning Ways to Share the Love with All of Your Children
Issue 81: When Special Education Fails to Be Special
Issue 89: Volunteering with Special Needs: Teaching the Served to Serve
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Ingrown, Groooaaann!

8/23/2019

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ingrown toenail podiatrist
We encouraged him not to watch, but he kept peeking...until he saw blood that is!
ingrown toenail podiatrist
Notice I sat behind the doctor who was kindly blocking my view from the whole thing. Praise God!
One of Jeremiah's not-so-fun summer memories involved his battle with ingrown toenails. He has struggled with these on and off for the last year or so. By the time we noticed one forming, it was weeks into the process and already infected. Jeremiah has a pretty high pain tolerance and he never told us his toe hurt.

Sometimes I could get them out with just clippers and peroxide, but twice we had to take him to the pediatric after hours ER to have his toe nummbed and them cut out. He handled it better than we did! Seeing them cut down his nail bed to remove the nail and then getting the bill for $200 per toe was very painful indeed!

We waited until school was out and then took him to a podiatrist to see about taking care of the ingrown nails for once and for all. On our initial visit, where I thought we would just be meeting the doctor and he would be assessing Jerry, he proclaimed that he was going to permanently remove the outsides and insides of two toes on his one foot...THAT DAY! And so we decided why prolong the inevitable and build on the anxiety and we went for it. It only took about twenty minutes or so from beginning (prep and numbing) to end (wrapping and getting aftercare kit).

I had this procedure done when I was about fourteen and it was much more barbaric with a much longer recovery time. Back then, they cut into your toe near the cuticle to remove the root of the nail. Today they simply apply some liquid to burn the root near the cuticle so it never grows back. And I had to wear open-toed shoes for months after the procedure and soak my foot a few times a day. Jeremiah had no such instructions. We could soak it for the pain if it made him feel better, but he didn't have to in order to keep it clean and from infection.

Four weeks after the first foot, we went back to have the two toes on his other foot done. He was such a trooper. The worst was the first 24 hours after the procedure. Foot #1 taught us that we really needed the doctor to call in something stronger than just Ibuprofen for him since every pain is so much worse at night and that's when the numbing shots wore off. There was absolutely no sleeping that night. He was miserable. He couldn't lay still because of the pain and so he paced, which of course made his toe hurt even more. It was pathetic. I called the doctor at 6 am the next day and had him call in Tylenol with Codeine. After his first dose, he finally fell asleep and slept the majority of that next day. Thankfully, we had enough of the Rx left over for the second foot and began giving him the meds as soon as we got home from his appointment. We stayed on top of it all night and, by the next afternoon, he was med-free and good to go.

The worst part of the healing process had to be that he couldn't go swimming for three weeks after each foot. That was pretty much the majority of his summer, but we made the best of it and squeezed in a few Adventure Island days when we could.

I am sad to say that now another toenail on his one foot is becoming ingrown on both sides and so I fear another trip to the podiatrist is in his future. We likely won't be able to wait until next summer to take care of it so may have to plan it for a Friday afternoon so he has the weekend to recover before going back to school on Monday.


Summer Swimming at Adventure Island
Adventure Island at last!
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Childhood Schizophrenia

12/31/2017

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So now that I am over the initial shock and sadness, I suppose I am ready to blog about Jerry's diagnosis. After six months of observation by his two ABA's, his neurologist, and then a psychiatric evaluation, childhood schizophrenia has been confirmed. I can't say that we were completely surprised. We had been seeing the signs for some time and there was just no other explanation. Also, two members of John's close family had/have the diagnosis and heredity does play a factor. If the disease is going to manifest itself, it is typical to be between the ages of 15 and 17. Jerry will be 16 in February. Dr. F said some of the classic autism characteristics we saw in Jerry after his diagnosis at 4 could also have been childhood schizophrenia symptoms that we were simply unaware of because of his autism diagnosis...the paranoia, the thoughts that others were talking about him or out to get him or hurt him, plotting against him.

And apparently, if the disease is already present, just temporarily dormant, it can be brought to the surface quicker by the use of marijuana, even for medical purposes. Jerry took medical marijuana for his seizures and mood from February to May 2017. His schizophrenia symptoms surfaced by the end of May when we immediately took him off of the drug. Trying not to dwell on the should have's, could have's, or would have's. Clearly, at some point, Jerry was going to exhibit the signs of the schizophrenia. It just may have appeared later, early 20's possibly. Remembering and clinging to Romans 8:28 and "all things". As an adult with the onset of the disease, we would have had less influence over his diagnosis and treatment. So there's that!

And with this new diagnosis comes mandatory medications. I say mandatory because until you have experienced your child in the prone position of a parking lot crying and screaming, pale and terrified because someone is shooting at him...watched him argue with an owl on the shower curtain for 20 minutes...cry uncontrollably because a voice was telling him he wanted to hurt his brother Jonathan...seen him pace and argue with people who aren't really there, sometimes sleeping no more than 6 hours out of 48...and walked in to check on him in the middle of the night only to see him sitting straight up in bed and wide-eyed with his favorite superhero poster shredded all over his bed because "he wouldn't stop staring at me and bothering me", well let's just say you just haven't walked a day in our shoes. The medications are mandatory, for his peace and well-being, as well as ours.

He is currently on two antipsychotics that are being tweaked to find the right dosage to make his delusional periods (10-12 days per month) more manageable and even less intense. Haldol is an old-school antipsychotic that helps with the delusions and hallucinations. It is also a medication John's one family member had success with and so the doctor felt would be more likely to help Jeremiah as well. Rexulti is newer and helps with the more positive symptoms of depression, not caring for his personal needs (yes, we are wiping him again), and the mood swings.

So far, the results have been positive. These phases show a less catatonic and terrified/paranoid Jerry. He can tell us now what the voices are saying and why he is crying or what is so funny that he is giggling uncontrollably about. Usually, in those instances, the voices have said something he finds funny. Those are less concerning to us than the voices that are mean and threatening to him. I'm not sure it's a great thing to always know what the voices are saying to him now. Sometimes, they are just downright creepy, but I think it makes Jerry feel better to tell us so we can comfort him.

The visual hallucinations have lessened as well. He no longer seems to see people/entities that only he can see. That's good. Another hair-raising experience is to witness him walk up to a corner of the room, look up, and say, "Oh, there you are!"

Anyway, there are the basics and what we know. You all know that I am a researcher by nature. I research or Google everything to find as much information as I can on a topic and possible solutions to the problems it presents us. This has been a challenge with childhood schizophrenia. There is very little out there. There is a shameful, dirty stigma to the disease that no one wants to talk about it, especially if they or someone they love suffers from it. And that's why I plan to blog about it, as I have other challenges we have gone through with Jerry. People, parents in particular, need to know they are not alone. Someone else is going through similar circumstances, feeling the same grief, facing the same fears of uncertainty. I did find a great Facebook page for Parents of Kids with Schizophrenia and that has proven to be a pretty supportive and sometimes encouraging resource. However, it has at times been downright discouraging as well with stories of incarceration, suicide attempts, and long-term residential care. I try to filter those posts through the truth found in Philippians 4:8, which says, finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things.

As always, keep us in your prayers as we navigate these uncharted waters. Above are two fairly informational videos about childhood schizophrenia if you would like more information.


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Jack

8/14/2017

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Where in the World is Jeremiah Bertic?
It has been a while since I've blogged...on purpose if truth be told. It has been an interesting summer, to say the least, and to be honest I just wasn't ready to let the world know where we were and what we've been going through. Embarrassed? A little. Sad? A lot. 

First off, physcially Jerry has been doing great. He is almost 88 pounds at this point, eating like a horse, and we are not even using the feeding tube anymore. It's still there, in case we need to use it again, but at this point, it looks like he will no longer need it sooner rather than later. Probably still the end of the year before he is free of it entirely, but we can at least see the light at the end of the tunnel. And compared to this time last year? Wow. What a difference a year makes. This time last year we were still detoxing from our two-week hospital adventure.

Mentally and behaviorally? Well, that's another story. As some of you may recall, we were trying Marinol, medical marijuana to help take the edge off of Jerry's anger and OCD issues. We stopped that at the end of May. We just weren't seeing the results we'd seen initially anymore and, after years of medication therapy, John and I have developed a new philosophy. If it isn't working, why give it to him? So we stopped the Marinol.

It's been a long time since Jeremiah was on no medications at all, of any kind. We figured it was time to see where his baseline was...emotionally and behaviorally. And what better time than over the summer when he is in the safety of his own home and surrounded by family who loves him at his best and his worst?

It was about that time, the end of May, when Jerry began to cycle through some strange periods of behavior, the likes of which we have never seen in him before.

One day he simply woke up and wasn't speaking to us. He was speaking, just not to us. He began having full conversations that appeared from our perspective to be one-sided, but to Jeremiah, were very much two-way conversations. His new "friend" even had a name. Jack. During this period, which lasted roughly 11 days, Jerry ate only when we placed food in front of him, cried and laughed randomly (never at us, but at something Jack told him), stared but never really looked at us, and could go for more than 24 hours without any sleep. He paced back and forth, talking, crying, and staring awkwardly at random objects, but seldom us. He also wandered aimlessly during this time and we really had to keep a close watch on him out in public because he would just walk off aimlessly. He followed our lead and directions, but often after repeating ourselves multiple times while he just stared blankly at us.

Then Jerry woke up another day and he was Jerry again...times 10. He was teasing and super aggressive, cursing and hitting, impatient, irrational, and just exhausting and quite literally impossible. Just about the time we thought we couldn't possibly live through another minute of his behavior, bam...delusions and Jack were back.

Each period lasted roughly two weeks, give or take a few days. And we recorded his behavior during each one carefully, as did his behavior therapists who were just as perplexed by this new behavior pattern. We even videoed his more delusional periods for documentation purposes.

By the end of July, we knew it was time to go see his neurologist, Dr. "F." His first suggestion was an EEG to make sure that Jerry's delusions were not the side effects of active seizures. They were not. The day we took Jeremiah into his office for an examination, he was right in the middle of one of his delusional cycles. Try as he might, he could not get Jerry to look at him, but seemingly through him. Jerry talked non-stop to his "friend" as he paced the tiny office we were in, never engaging with Dr. F directly. This was one of the times that Jerry's "friend" was funny and entertaining it seemed as he walked around giggling incessantly, to the point that he drooled down the front of himself.

Dr. F seemed as puzzled as we were, but said that it was very clear that he was having psychotic breaks of some nature and was currently in the middle of one. As much as he knew we had been trying to avoid medication, he strongly encouraged us to consider an antipsychotic, for Jerry's well-being and ours. He also gave us an as-needed anxiety aid for him that would also help to calm him during his times of higher anxiety and aggression. That night we started him on Zyprexa at 10 mgs.

While we have seen less aggression and calmer Jerry during his more difficult stages, he is still cycling. And now, even during those periods when he for the most part seems back to the old Jerry, he still struggles with hearing the voices. It's not so bad when "Jack" is entertaining and causing the giggles. It's almost funny actually. But it's during the times when Jack is threatening and has Jerry scared that are the most difficult to see him in.

We are there now. We saw Dr. F for a check-up today. He wanted to see him before he goes back to school. Scared Jerry showed up yesterday afternoon. He paced all evening last night and didn't fall into bed until 5 am this morning. Then he was up at 8, wide-eyed and still scared. He has been pacing all day, even in Dr. F's waiting room.

When Dr. F. tried to give Jerry a high-five today, Jerry refused and yelled "space!" You would have thought Dr. F was poking him with needles by his reaction to taking his blood pressure and checking his reflexes. He sat in the exam room and cried, at one point telling us that he was tired of "all of it." It was heartbreaking really. Dr. F was very concerned by what he was seeing today and increased his Zyprexa to twice a day. He also encouraged us to use the anxiety aid more frequently, especially when Jerry was as he saw him today, scared and very paranoid.

The picture posted above was during one of Jerry's paranoid periods, when Jack was more of a foe than a friend. We were at the movies and, as you can see by the expression on Jerry's face, some of us were more there than others.        

Jack has made Jerry laugh, scared him, had him in tears, and convinced him once that people were shooting at him. That was in a parking lot when he grabbed Michaela and I who were walking on either side of him, began screaming, and dropped to his knees. We had to practically carry/drag him to the van. He was pale as a ghost and crying the rest of our drive. Once, Jack was "responsible" to moving items around in Michaela's room and destroying others in Jonathan's just to try and get Jerry in trouble...according to Jerry. Needless to say, the kids are encouraged to lock bedroom doors when they are not home now...and sometimes even when they are.

He is convinced actors on the front of movie jackets and characters on the front of books are out to get him and telling him things and he has ripped all of the Marvel posters off his bedroom wall because they were "staring at me" and "wouldn't leave me alone." Today he asked for a bath and then kneeled on the edge of the bathtub naked and screaming because he was too scared to get in. he yelled, "Turn it off, turn it off!" Typically he loves baths and takes two a day, just because. 

As always readers and friends, pray for us. We have placed an alarm on the front door to alert us in the event Jerry tries to go out on one of his up-all-nighters. We are praying for him and over him like mad. We do our best to make him feel safe when he feels threatened by Jack and love him unconditionally when he is having his bouts of aggression.

​In reality, this is brand new territory for us. I can make token boards, reward charts, behavioral modification plans, and follow a medication regimen. I can kiss scraped knees and keep my distance when he is not in the mood to be touched or loved on. I can turn down too loud and remove him from situations that cause him sensory overload. And I have become an expert meltdown detector!

I cannot, however, get rid of Jack, no matter how hard I try. He's a bully whose parents I can't call or force to keep his distance from Jerry. Shoot, I can't even see him. The best weapon we have against him at this point is prayer. And truthfully that's hard for this momma who wants to make it all just go away. So pray with us please. This is uncharted territory...for us, not for God. Pray he will give us wisdom in dealing with this, peace that He has it all under His control and that none of this has taken Him by surprise, wisdom for Dr. F in the best treatment plan for Jerry, his new school year that starts in two days, and a complete and total deliverance for Jerry from Jack.

Thanks guys. Love you all. 
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A New Goal!!!!!!

5/22/2017

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Weight Gain
He gained!
I know it has been a while since my last update, but not much has changed, which in our lives is a good thing! Ok, we have had some crazy behavior issues the last few weeks with the anticipation of summer, but what Florida teenager isn't bouncing off the walls and "over it' when it comes to getting up early and going to school everyday as it is so beautiful outside and Adventure Island is open?

Today we saw the GI doctor for the first time since his G-tube replacement surgery on April 14th. Been loving the new button tube by the way. Anyway, on April 14th, he weighed 70.6 pounds. At today's visit, he weighed 75.24 pounds! That's 4.64 pounds in just over one month! Yes, I did that math!

The new goal? 92 pounds! At 92 pounds, we can remove the tube altogether. At this rate of weight gain, that's in about 4-5 months. So he needs to eat 1,800 calories a day.

Of course, with every praise comes a prayer request. Jerry has a nasty granuloma growing around his port. Click here for more information on just what that is. Basically, his body is trying to close the hole it knows should not be there by growing extra skin. This is causing some irritation and making the site sensitive.

We are trying a steroid cream to shrink the tissue. If that doesn't work, the doctor will use Silver Nitrate to cauterize it. It's similar to removing a wart and involves a significant amount of stinging for a time afterwards. Hence, prayer request. Please pray that the steroid cream shrinks the tissue. Poor guy has had enough pain for a while. And said doctor talked about the stinging in front of him so I don't need to tell you how adamant he is that burning that skin off is NOT going to happen.

Also pray we, Jeremiah, his classmates, and his teachers/therapists survive the rest of this week...the last week of school! I will update everyone on how he ended this school year next week!
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Slow and Steady

2/13/2017

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G-Tube for Kids
G-Tube
We have been home three days now and Jerry is getting around better. He is at least standing up straight and walking a little bit faster than Tim Conway on the Carol Burnett Show. Wow. That just dated me, didn't it?!

Anyway, we are home, we are surviving on the new diet, and the shock of it all is finally starting to wear off as we settle back into routine. Tomorrow Jerry even returns to school. And I say that "we" are surviving the shock of the new diet because this really is a family thing. We are all adapting to what Jerry can eat at home, out at restaurants, and when at others' homes.

We saw the GI doctor today for his follow-up and he is at 68.2 pounds, a few less than what he was discharged from the hospital at, but with the change in diet, I think that is to be expected at first. It has been a frenzy of Pinterest and Google around here to figure out what he can and cannot eat. Thankfully, the dietician at the hospital gave me her cell number should I have any questions. She is likely regretting that decision right about now!

We follow up with the GI again in 5 weeks when we will schedule Jerry for a one-day outpatient surgery at St. Joseph's to get his G-tube replaced with a button-style one. Basically, the extra "appendage" now dangling about 7" from his belly will be gone and just a button-style protrusion will be there as a feeding port instead.

​When does that one get removed? That is the million dollar question. It's all up to Jerry I suppose and how quickly he gets back to eating normally and gaining some serious weight. And so the journey continues.


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9th Hour Answers

2/13/2017

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We are finally home! The doctor who did Jerry's G-tube surgery discharged us yesterday morning at about 8:30 am. We didn't actually leave the hospital until almost 3:30 pm however. There were problems with finding a home healthcare facility that carried Jeremiah's formula. Then there were problems with trying to convince Cigna that Jeremiah needed the formula prescribed him. It is different from what they gave him last time. And there is a very good explanation for that.

While we were waiting, the dietician came into our room to speak with us. She reviewed Jeremiah's small intestine biopsies at the request of the doctor herself. It turns out that Jeremiah is lactase and maltase intolerant. In other words, his body lacks the enzymes necessary to break down foods containing lactase and maltase. Your lactase enzyme levels should be between 15.0-45.5. Jerry's is 3.6. Maltase should be between 100.0-224.4. Jerry's is 83.5.

This means that every time Jerry eats something with lactase or maltase, his body struggles to digest it. This could finally explain the stomach pain, alternating constipation and diarrhea, unexplained weight loss, and ultimately, the hemmorhoids from straining so much.


Because of his history of very loose stools (TMI, I know) from the time he was a baby, it is likely that he has been intolerant to lactase and/or maltase all of his life and we just didn't know it. We did have him to a GI for Celiac testing when he was a little guy, but when the results came back negative, we just stopped looking for answers. We had always been told that kids with autism often have GI issues and so we just assumed this was all a part of the diagnosis. It wasn't until the SMA diagnosis last summer that anyone started digging a little deeper.

We still don't know if these intolerances caused the SMA in the first place or if they are just contributing now to his inability to recover completely from the SMA. And we likely never will know. Which came first, the chicken or the egg? Who knows?! But at this point, it doesn't matter. What matters is that we finally have some real answers.

So now we work on eating...the right foods, the proper amounts, at regular intervals. His new formula is Pediasmart Organic Soy Vanilla. It is no GMO, no corn, dairy free, and gluten free. Already we see the difference in him in the mornings as compared to the regular baby formula they had him on even just a week ago when we first arrived at the hospital. He would wake up in the morning complaining of a stomach ache and then spend a long time in the bathroom hurting. He woke up yesterday and this morning with no pain and, for him, a regular bathroom visit.

​So the diet restrictions are lactase free (no dairy) and the specified carbohydrate diet. Click on the link to read more about it. I didn't post this last night after we got home for a few reasons. First, we were exhausted. Second, we were still waiting for Jerry's home health equipment until 9 pm last night. Third, I came home and began researching all I could find out about the SCD diet and was completely and totally overwhemled, to the point of tears. I knew I was just too tired to be looking into anything, but I also needed to know what we have to do, change, buy, etc...all the logistics. 

The dairy free will be easy. The simple carbohydrates only, not so much. It appears more strict than gluten free and there are certainly not a lot of already prepared or packaged products ready to be bought and eaten for people on the diet. Still, I am glad we have answers and we will certainly do whatever we have to in order to heal his belly and get him back on the right track. He will also still be evaluated for and begin feeding therapy at All Children's in the very near future to work on his food sensory issues as well because we know that is a component too.

In the meantime, one praise is that the rate his formula runs at night for the ten hours he is feeding is slow enough that we do not have to wake in the middle of the night to add formula to the bag. That is not a small praise. That is monumental. The lack of sleep last time was hard on all of us with machines beeping and formula-mixing in the middle of the night. Last night was our first night home and everyone slept soundly all night long. Ahhhhh. So nice!

So keep praying for us. We have a lot of work to do and some life habits to change. And I need a food dehydrator and Ninja food processor if anyone happens to stumble across one at a yard sale or knows of someone not using theirs. Thanks for all of the prayers and as always, I will keep you updated.
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Morphine and A Delicate Balance

2/13/2017

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G-Tube CoversG-Tube Covers My Amazing Friend Sue Made

Jerry finally got his G-tube this morning. While I am sure he was pleased to wake up with nothing trailing from his nostrils anymore, I am not sure he would have traded the NG tube for what he woke up with had he known then what he knows now. It hurts. And it will for a while. He has a foreign object inside of him and protruding out of his stomach. Ouch.

On a positive note, Jerry is quite entertaining once the Morphine kicks in. After his first dose this morning, he began singing Jesus Loves Me. It didn't last long though before the pain and discomfort were back. Then he is irritable, restless, and oh so sensitive to every "irritation" around him, which this afternoon mostly had to do with his brother Ben. I swear he could hear Ben breathing and was thoroughly annoyed, which by the way Ben found quite entertaining in and of itself.

And he can't seem to find a position where he doesn't hurt. The bed goes up, the bed goes down...over and over again. Hopefully tomorrow we can get him up and walking to ease some of the discomfort and work out those sore and stiff muscles. He is finally out of isolation now that all of his cultures came back negative so he can even go for a walk outside. They have a nice garden close to his room. The fresh air should do him wonders. I know it will me!

And tomorrow he should be allowed to eat again as well. He has been NPO since midnight last night. Not that he seems to care much. I think the g-tube pain is overriding the hunger pains.

The plan is still to go home Friday if all goes well when they test out the G-tube tomorrow. It needs 24 hours to heal some first before they use it. Besides, his stomach is tender right now after having been "hole-punched" and so they don't want to aggravate it any more today. I think that is why he cannot eat or drink today as well. In my twisted sense of humor mind, I keep picturing the old Saturday morning cartoon characters like Yosemite Sam who, after having been shot, would drink water and watch as it fountained out through the bullet holes in their bellies. I think I'd freak just a bit to see red Gatorade (Jerry's favorite beverage) come whizzing out at me from a hole in his stomach!

And I am grateful to friends who can sew...who thought they were done sewing costumes and the like for my children when they quit participating in drama classes. Thank you Sue for sewing G-tube covers for Jerry, a necessity to keep his tummy skin protected and dry from leaks and irritations. It was overwhelming to think about shopping for those on Etsy and Amazon and eBay. Too many choices and varieties. From beaver costumes, ball gowns, and wolf leggings to G-tube covers. You are amazing and a blessing. And it helps that you are a nurse too!

It's a delicate balance around here now. As mom, I want to carry him to the bathroom when he has to go, summon the nurses for his Morphine twenty minutes before it's due again, and slide into bed next to him and rub his head and scratch his back to take his mind off of the pain. But as mom to Jeremiah, a little boy with autism, I know that I need to be careful how much I give this attention-seeking little man of mine, lest I create a whole new monster to contend with once we are finally past this current crisis. Not wise. But he is still my baby. Conflicted. Hence, the delicate balance.
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Hurry Up...And Wait.

2/13/2017

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Discouraging news today. Jerry couldn't eat anything past midnight last night and they wiped him down with antiseptic wipes twice since then to prepare him for his G-tube placement this morning.

We get to pre-op, see the doctor, and are just waiting for them to take him back when he tells us he has to pee. When he gets up from the gurney we see blood. And the back of his underwear are soaked as well. I didn't say anything in front of him because I didn't want him to freak out, but I got a nurse who got the doctor. He decided that the procedure needs to be postponed until we figure out why he is bleeding. So back to his room we go.

After examining him, it's determined he has a bad hemorrhoid that is bleeding. But to make sure that is all it is, they are running cultures on his stool for a staph infection called C-diff and other bacterial infections. Because all of his biopsies returned normal, it is not pathological. And it is likely not C-diff because he is presenting no other symptoms at this time, but they have to be absolutely sure.

In the meantime, he is in isolation, meaning no more walks, trips to the playground or basketball court, or Child Life activities. In his words, "This sucks." Mrs. Kim was here and tried to encourage him by helping him think of things that "don't suck." He said God hates him. Makes my heart hurt for him. We just sat in his bed and cried together. It does suck. He has that right. But as Kim reminded me before she left, ALL things. For whatever reason, Jerry was not meant to get the G-tube this morning and we are meant to be here a while longer.

Because the results from the culture take 48 hours to come back (the C-diff only an hour), his G-tube insertion is now scheduled for Wednesday morning, barring any other complications or delays. Then Thursday morning they start his feeds in the new port and, if all goes well, we will go home Friday.

Poor guy is standing next to his bed now because it hurts to sit on his bottom. I am discouraged. He is too. We just want to go home. Instead, I gotta put on my happy mom face, find a positive in all of this, and become very entertaining for a 14-year-old's amusement. Lol!

Update: They just came in and said the C-diff test was negative. Guess I have my first positive, huh? Thank you Jesus.
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G-Tube

2/13/2017

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So the results are in. All of Jerry's biopsies and his test for SMAS are negative. However, if he doesn't start eating and drinking again, the SMAS will return and we will be back here yet again.

So now that we know this is behavioral/psychological, we at least have a starting point, if not a plan yet. They re-inserted his NG feeding tube about an hour ago. They had removed it after using it to clean him out. Not sure why. They should have just left it in "just in case." Anyway, they didn't and there were lots of tears over getting another new one today, shed by Jerry and his mom. 

The plan medically is to work on getting him to eat during the day by mouth and then feed him 360-calorie-a-can formula from 8 pm to 6 am. After seeing how well his stomach tolerates this over the weekend, Monday they will put him to sleep and two GI doctors will convert his NG tube into a G-tube. One navigates the internal camera to choose the proper placement while the other doctor actually makes the incision and attaches the tube to his belly. Again, this is a more permanent solution to feeding him at home until we get him eating and drinking again. If the calorie rich formula proves to be too upsetting to his sensitive stomach because it hasn't had to handle that many calories in a long time, then they will back him down to a milder formula.

I spoke with Jerry's behavior therapist today and her and his other therapists are working diligently now on a plan to change his behavior and habits and get him eating again. I am anxious to implement this new plan they are working on devising. We are speaking to an occupational therapist about sensory issues and how to cope/compensate/correct them. Feeding therapy may also be in his future. In the meantime, we have to begin logging everything he does eat and drink. We are going to try to figure out a connection between what he is eating and the sensory stimuli he is either looking for or trying to avoid by eating that particular food.

While initially I was angry when I realized this was all behavioral, I truly believe that he cannot help what is happening. He cries over food, literally. He cannot tolerate the smell or the taste or the texture. He wants to go home. He hates the feeding tube. He is not doing this on purpose. And it likely does hurt to eat much of anything at this point. His belly and colon have not had to work hard to digest much of anything lately. So when he does eat, it hurts. He ate a few bites of his lunch yesterday afternoon and then sat on the potty for twenty minutes in pain.

We have our work cut out for us. So does he.

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No News Is Good News?

2/1/2017

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Hospital Goodie Box Child Life
Opening A Goodie Box from the Hospital
It is the end of day 3 here at St. Joseph's...take 2. After a grueling cleaning out process, Jerry underwent his colonoscopy and endoscopy today. The results? Nothing worth writing home about as the saying goes. Besides some mild gastritis in his stomach, his scopes were not very revealing. The doctor did say that there are some things that simply cannot be seen without a microscope and so he did multiple biopsies from Jerry's esophagus, stomach, and colon. Those results should be in Friday.

So now what? Tomorrow morning Jerry will have another small bowel follow-through, his third since July. This will show if the SMAS has returned as a result of his loss of appetite and even greater loss of weight. His weight is less now than it was when he was released from the hospital back in July.

If the SMAS has returned or is even on the immediate radar, they will re-insert his NJ tube into his small intestine so that we can begin supplementing him with nutrients from special formula in an attempt to bulk him up again. Not that bulk has been any sort of descriptor for him at all over the last 10 months since this battle first began. The most he has weighed since last April is about 75 pounds. Now he is 65.

For as much as Jerry hates the feeding tube, I am giving myself the perseverance and patience pep talk having him home with one will require for us as well. It's an IV-pole-toting, formula-smelling-and-mixing, tube-leaking, booger-encrusted, sticky-face-tape-wearing, kinked-tubing, error-beeping, up-in-the-middle-of-the-night, pole-dragging-up-and-down-the-stairs, endless-supplies-ordering, line-flushing existence that takes time to see as routine. Nor do I want it to become such.

If the SMAS is not present or an impending danger, he will be evaluated for a G-tube instead. And no, it is nothing like a G-string. A G-tube is surgically inserted into his stomach and considered a more long-term feeding support system. It's also a more discreet, less embarrassing option for an active teenage boy in school.

Of course the great mystery has yet to be answered. What made Jerry stop eating, caused his subsequent weight loss and eventual SMAS, and resulted in this crazy roller coaster ride for us all in the first place? That is the million dollar question folks. And no one really knows. But one thing we are certain of at this point. If Jerry's biopsies taken today come back normal, the only other possibility is that this is behavioral.

In other words, somewhere, somehow, and at some point, Jerry associated food and eating food with a negative reaction or experience that he cannot forget. Maybe something he ate made him sick once. Maybe it had nothing to do with something he ate at all, but he developed the flu or caught a virus after eating once and so now he associates eating with getting sick and so naturally doesn't want to do it. We've all had similar experiences where the thought of a certain food or even simply smelling it conjures up some foul memory and we just can't bring ourselves to eat it again, even if it was once a favorite food. It may not be rational, but it doesn't matter. Maybe it's an autism-related sensory issue with an out-of-whack sniffer or touchy taste buds. Lord knows we have seen heightened sensory intolerances since he stopped all of his medications. Maybe it's anxiety or fear. At this point, we just don't know. And we may never know. It really doesn't matter. All that matters is getting him to eat again before his tiny self becomes so malnourished that organ damage results.

Physical versus behavioral. If there is one thing I am absolutely without a doubt certain of, it is that behavioral in Jerry will be so much more difficult to reverse and resolve than physical would be. Behaviorally speaking, we are always three steps forward and two steps back in progress-making.

I have to be honest. While I was listening to the specialist tell us that Jerry's scopes appeared to be normal overall, I couldn't help but become discouraged and disappointed. Please hear me out and don't misunderstand me. I do not want anything serious to be physically wrong with my son. But I was hoping for a logical, non life-threatening, swiftly and easily remedied solution to why I have a 65-pound teenage son. Of course, now that I re-read what I just wrote, I see the word logical. And therein lies the problem. Nothing about parenting Jeremiah has ever fallen into the realm of logical! Lol! Why should this be any different?!

Still, we have no definitive answers until the "fat lady sings" on Friday, as these scopes he had today exhaust the battery of GI tests that could reveal what's going on in his little body. And so I am going to refuse to cross that bridge until I come to it, even if it is only two days away! Gonna walk slowly people!

And so that ends day 3. Overall, it was a day that started with the beginning of a much-needed new ladies' Bible study semester, non hospital coffee (It's the little things.), a friend sitting with us while Jerry was in his procedures, a visit from Pastor Mike, another friend getting Micky out of the house for a fun afternoon, that same friend ordering us dinner, getting to go home for a few hours and eat with the other kids, Ben looking and feeling slightly better from his flu bout, Jonathan taking care of replacing two old car tires after we got a flat on the way home from the hospital, John's job and boss being flexible enough for him to work from anywhere with WiFi, a daughter who kept the house running and clean while I was here all day, one of her brothers was sick, and the other one was at work, Jerry's behavior therapist coming to visit with goodies in tow, family coming to visit with Apple pies from Checker's, friends and family from all over texting, FB posting, and calling with well wishes, prayers, support, encouragement, and offers of help, uneventful and uncomplicated anesthesia and procedures, and complete and total strangers dropping off age-appropriate fun boxes of games and activities for each of the kids in the children's hospital. Blessings. More blessings than worries, worries I have absolutely no control over anyway. It's all about perspective I guess.
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