Our Gentle Giant

Fastest Stay Yet

2012-02-11T21:07:00.001-07:00

I know, I'm bad at not keepin ya all posted on J. So I have a little time between chores....

J's surgery on Thursday went well. They didn't do what they had anticipated doing. The surgeon found out that J didn't have ANY scare tissue hold the stitches in place or rather the "gadget" in place. So he used super lasting string (I'm being funny here, I really don't know what type of string they used) and he sewed it up really good, this time...FINGERS crossed.

J had a rough..very rough first night. No meds, means no sleep! Ran the fevers and vomited. It was great! (I'm joking...again, and yes, I've had sleep!) By mid Friday J's fever was down and he was starting to hold sips of Propel down. He even was walking around. Dad come to stay the night and he slept pretty good. Probably normal, is what I'm thinking and was talking, smiling and they even let J have some delicious jello.

Today the surgeon said he is doing so well, why keep him at that hospital. I know, shock! That's right folks...J might be coming home tomorrow (Sunday) This is the fastest we have ever been home from a hospital stay/surgery!

Everything looks good and is working. J is in a wonderful mood and smiling.

Fingers are still crossed!

Surgery

2012-02-08T09:50:00.003-07:00

We new it was inevitable that J needed to have it fixed.

He is scheduled for surgery Thursday around 4ish. The surgeon was wonderful in squeezing us in his busy schedule and also accommodating Dad's work. I will go into more details of what he is doing once it's over. But he is trying something new that has only been done once to a patient at the a joining hospital with very similar problems with keeping it above the skin.

No Words....

2012-02-02T10:26:00.001-07:00

It's happening again, and no one knows why. We noticed J's stoma starting to decrease in size on Monday. So we called the surgeon who was out of town at the time but would call back (they are really good at that). To document the decreasing size, I took a picture in case the doctor wanted me to send it to him. His nurse called the next morning and said that the doctor wanted the pic and gave me his email to send it. 2 hours later, they said to keep track of "it" and if anything changes to immediately call.
We have our regular appointment with him on the 14th, but with how things are decreasing in size, it looks like it might be moved to next Tuesday. Still waiting on the call. They don't want it to get as bad as in December, so they are having us monitor it pretty closely. The surgeon actually doesn't know what's going on and why this seems to happen around the same time (it's been 8 weeks from the Surgery, which was about the same time it happened in December). He has consulted with GI specialists at the a joining hospital to see if they have ever seen this happen. Thankfully they have in very few cases...it's NOT common!!! We are given about a 85% chance we are having surgery again...to do what? Who knows...There are no words for this situation...or no words I can write!

Rough Week

2012-01-24T09:31:00.002-07:00

Last week was a little rough. I think I should have done things differently and know I'm kicking myself in the butt! We put J on a liquid behavior med that is similar to the pill. The pill just wasn't digesting...don't ask how we know :) At the same time we switched his night time meds. Took him from 3 to 1 of one kind and added a new. This is what I shouldn't have done. I should have waited to see if the liquid meds would work and not cause his stomach pain (we were told that it would upset his stomach and that it was actually harder on the stomach then most liquids....wonderful!) before I did his night time change.
Well, by the 4th sleepless night, and J complaining of "it's bitting" again...Sunday we decided to forgo the liquid and just chop up his behavioral meds. It's been 24 hours and he's not complaining as much. I called the "Drug" doctor, to see what to do next on his night time routine. He had told us if it didn't work to go back to the originals and he would prescribe another sleeping agent. That was yesterday and still no word, so I put J back on his original sleep cocktail.
It was a little struggle with sleep, but he did sleep. (the last 3 nights he hasn't been sleeping...AT ALL!!!) Now to get his little (I say that lightly) behavior in tact.
To top that all off...I guess I didn't do so hot trimming his toe nails, 2 are infected...so he's real (not really) happy about that too. Yes, I've called the doctor to see if she will prescribe an antibiotic for them. There is no way in (well, you fill this in) he will let a doctor look at his toes or touch them.
I have soaked them, peroxided them, tried to rub them so whatever is caught will undo itself.

Ugh...the joys of the J-man!

He Made It

2012-01-09T15:38:00.002-07:00

That's right folks, J made it to school today. Yipee!

I don't know who was more nervous...but I do believe I was and will be for a while. I love his teachers, the school...etc, it's just hard to let him be taken care of by someone else. I had this problem in the hospital.

From what I was told, he did great.

He came home and hung his jacket and fuzzy hat (thanks little bro) and then had an applesauce snack.

And he was out like a light. Exhausted for 2 hours!

But it's a start and a great one!

Fingers Crossed

2012-01-08T11:56:00.000-07:00

J seemed to have a pretty good Saturday and it looked like maybe he could go back to school on Monday. We even took him to a tad bit of church on Sunday, that wore him out. As soon as he was dressed back in his PJ's he was exhausted on the couch. I did manage to get some applesauce (his new favorite food) down him and some juice. But that's it. He is wiped out!

Maybe we'll try school for an hour or so...

Fingers Crossed!

Follow Up Visit

2012-01-04T09:52:00.000-07:00

J had his follow up surgery appointment yesterday. I wasn't sure he was going to make it. We have had our good energy days and lots of low energy days. Yesterday was one of those days. So I loaded a brother and his Ipad and off we went to our "favorite" place of all time. (that's a bitter joke)

J had his superman hat (it's cool) and of course a BYU hoodie cause that always makes the U doctors happy. (another joke)

Well, we somehow got a newbie nurse. Nothing against nurses who are just starting...but really, listen to the patient or the mother of the patient please!

She told J to roll up his sleeve for the blood pressure, I told her that they normally just take it with his sleeve down. Blood pressure good, heart rate a little high; 113.

Then with her loud voice she told J she was taking his temp. He is not deaf!

Yes he had another low grade...99.8 or not even 38 C. Nothing to worry about...yet!

Then we went into our waiting room. J was very quiet and his brother was really trying his best to entertain. The nurse was trying to get information and asked all the routine questions. Which is fine. But this one, was seriously stupid on her part. She asked, "Does J have accidents when going to the restroom?" "What do you mean," was my reply. She then clarified. Does he soil his pants before he is able to use the restroom. I then told her he wasn't toilet trained. You would think she understood, but nope...she asked the question again. "So he has accidents before he can get to the restroom?" No, I replied...again J is not toilet trained so therefor he is always having accidents. DUGH! What does not toilet trained mean? Look in that silly little reference book of yours!

Back to the appointment. The surgeon came in, touched his gadget...everything looks good. (we have heard this before) He has lost 5 more pounds, but is eating. I am reminded that he was a very sick young man and that his body might just take a while to recover. Neither of us know why he isn't interacting or so drained, but we are both hoping it's just part of the recovery. I told the doc my fear of it not working at the 9 week mark (that is where it all happened) so he said he would see J at 10 weeks to make sure it doesn't happy again. He then said in the 12 years of working at the U he has never seen this happen before. That's right folks...J is the first! at least for this doc.

Don't worry, I'm sure someone reading this will say it happened in their family or has heard of it before, and that's okay. I really wouldn't wish what happened to J to happen to anyone.

So...

I haven't a clue as to when he is going back to school. I am hoping for next week if he can tolerate it and have the energy to go. We do have an appointment for the Drug doctor next Friday (the 13th) to discuss his non sleeping through the night problem and one of his major behavioral meds isn't exactly dissolving.

But he's home!

Wednesday

2011-12-22T09:48:00.002-07:00

He's Home!!!

News

2011-12-17T08:32:00.001-07:00

J has kept his fever running about 101 to 102.6. They have started him on another antibiotic that is given every 12 hours in a 3 round series. So No, he's not coming home before Monday. He is also getting a dose of Tylenol every 4 with his other Antibiotic every 6. WHEW.

Please for our family, keep J in your prayers or thoughts so that his body could heel and he could possibly be home for Christmas.

December 16th

2011-12-16T09:56:00.001-07:00

Frustrated can't explain what we are feeling! Tuesday night J stared running a high fever of 102.6 which meant no going home, dang it. Wednesday they wanted to do a ct scan to see if there had formed an absess in his belly and to also check what his lungs are doing, especially his left one. Wednesday night his fever came at the usual tome, but no as high. J got at least 3 hours of sleep which was actually more then he has the whole time he has been here. (that is without sedation) The ct scan came back normal with the exception of his Lungs. There is some fluid arou d the left, but the right seem to be getting a little better. So we waited, and waited. I finally had enough and called the nurse to see what the heck was going on. The nursing staff has really been wonderful. He took my frustration to e surgeons and they came back with no answers. They can't send J home with a fever, but haven't a clue what is causing this. Ahhhhhh!!!!!!!!This morning they finally came up with the plan of giving him another antibiotic to combat any bacteria that J might have contracted while here at the hospital. They might even attempt another (unthinkable) urine analysis. I told them that they would need to do it before his pull up needed changing. (they waited the last time and got nothing...duh!!!They have finally kept him on Tylenol for the fever and just about to start the new. Home seems not close enough.

Tuesday - December 13

2011-12-13T09:58:00.001-07:00

Last night J had his fever again, but not as high. His surgeon came in this morning to let me know they think the fever is a result of J's phnemonia still brewing. They ate going to keep him on the "kill" all antibiotic a little longer. J's gadget is working. They found a really long medical term for what happened, it could happen again....but we know the signs to watch for so it doesn't become as serious as it became. They have even used the words "home tomorrow," so we will keep our fingers crossed. Both Dad and I don't want to take J prematurely out of the hospital, so they are making sure his body is healthy enough to be at home.

Weekend

2011-12-12T07:21:00.002-07:00

We made it through the weekend. J continues to improve. They have put him on solid foods. Okay this is funny.....Yesterday was actually the first attempt at food and what do they bring him for lunch? Chilli and cornbread!!! Are you kidding. This is for someone that hasn't eaten in almost a week, has had infections galore, plus he can't digest corn. DUGH! Thankfully they are willing to get j to eat anything, so yogurts, ice cream and puddings are what we are trying to get him to eat. But J is a picky eater, so hopefully they don't keep him due to not eating. I can get him to eat at home. The doctors were almost considering letting J go home today (I know, a tender mercy from our Heavenly Father) but last night he ran a pretty high tempeture and they don't know what caused it. So they are doing some X-rays to see if the phnemonia is acting up again. He is on a pretty powerful kill all antibiotic to rid his body of everything that is yucky. So another puzzlement that J has thrown at them.He will see the physical therapist to get back on his feet and to asses his strength. His arms are strong, we already know that (remember the tubes he pulled out?) so it's just reminding his legs what to do again. A long road to recovering, but we have started, and that's all that matters. P.S. sometime I'll blog about how we got the first smile out of him after coming out of sedation.

Saturday

2011-12-10T07:28:00.001-07:00

Our Heavenly Father has truly been there for us and J as well as blessed us. J's recover is going remarkably well and the doctors are amazed at how quick his has been able to recover.

Thursday night they removed all but 1 IV (that would be 4 IV's) his nose tube and breathing tube, plus the unthinkable tube. He did have some problems breathing, but they were able to stabilize him with a mask and oxygen blowing 100% on him. J doesn't like this so it's a good thing they still have him in restraints.

Then during Thursday night, they had to put a tube down his nose 2x to clean out all the crap J was choking on and suction out his mouth. He did not like this one bit.

Friday they kept decreasing the amount of oxygen to see if J could hold his own. When I left in the evening J was holding his own at 45 percent oxygen.

His kidneys have been great. All other organs that were effect are healing. The infection in his lungs, they are treating pretty forcefully. They found E-coli in a sample they took from his breathing tube. Weird, since it came from his lungs and not his intestines. But again we are talking about J.

Around midnight, his dad text me and said we were being moved out of ICU and into a normal room. Blessing from Heaven above!

Then this morning his dad said, J has awoken and is talking a mile a minute. The doctors and nurses have even mentioned the "going home" word. We didn't expect that until next weekend. But it could be as early as Monday.

What tender mercies we have been given.

We are truly blessed and grateful that J is still with us.

8th of December - Update

2011-12-08T08:45:00.001-07:00

Its's been scarey to say the least. This is how everything unfolded.....

Sunday: very little gas and output, j is still saying he doesn't feel good, but eating.

Monday: he woke up at 4 and there was nothing to empty or burp. This wasn't normal. Dad got up with him an hour later and still there was nothing. This caused for a little alarm. While I was getting up I had the strong expression to check his gadget out even though everything seemed to be sticky (finally). So I got j up and while showering removed it. That is we're the alarm came. It had receded in and you could only see about a pencil eraser of it. Plus it was dark and some clots came out. Again, not a good sign. We finished getting ready, he drank his shake and were on our way to the ER room by 8:20. They did X-rays he threw up, tons...and then the downhill roller coaster began.They really don't know why it happened or what caused it to happen, but it did. His oxygen dipped, heart rate increases and he just wasn't happy. Monday he didn't sleep at all.

Tuesday: they ran more test, more X-rays. I couldn't get his oxygen up past 85% which was very frustrating plus his heart rate was peaking at 150. Then dad came to relieve me and while I went home to shower, they moved him to an imcu care room (intermediate icu). When I got back dad told me his heart was at 177, they had done a ct scan and more X-rays. At 9pm we were told he needed to have emergency surgery. He was given a beautiful Priesthood blessing. They redid his gadget because it died! And then we were moved into the icu care unit.

Wednesday: some complications, infections, breathing tube being pulled out. J does to like anything on him. Yes, they have him in very soft restraints to prevent it from happening again. Blood pressure went down, change of sedation medication...and he is very swollen from all the liquids they have been pumping into him. On a good note, he is having output in all areas. They didn't think it would start working this fast, so the surgery was a success.

We are continually being told how very sick he was,is and again how lucky we were to catch it.That brings you to today. Our goal is to get him off the breathing tube and start getting him stable to move out of the icu.

Hospital...AGAIN!!!

2011-12-05T19:35:00.001-07:00

Let's just say it wasn't working for over 24 hours...not good!

So I took him to the ER this morning.

They did x-rays, put some die in it...did more x-rays...and again another x-ray.

Then the doctor (assistant to the surgeon) did the unthinkable...there is no way I'm explaining it on the blog!

Then he was puzzled so he called "the surgeon"...

The surgeon did the same procedure and couldn't figure what was going on. So he placed a red rubber tubing in "it" and drained it...LOTS!~!!

J will be observed for a couple of days to see if the swelling will go down and how to prevent this from happening again.

No wonder he has been grumpy lately...and I thought it was just the change in weather..

BAHAHAHAH!

Bags and Blockage!

2011-11-18T09:02:00.001-07:00

Have you ever gone through so many products, that your brain hurts! We are getting to that point. One day his gadget will stay on 3 days while others, maybe 4 hours! What is the difference? I haven't a clue! So yesterday I decided to try a whole new product, but forgot there wasn't a bag that fit it. I thought maybe another bag could adjust...nope...let's leave it at that...but I loved the barrier! Now to see if they have the rest of the parts to fit. We then tried this one brand...it's still on him. It's a wonderful clear skin fit...love it. I'll let you know what the verdict is on that.

Did you know if J doesn't process his food correctly, it gets redirected to be thrown up.

Yup, that's what happened this morning.

I have a clue if it was his wonderful lunch or his dinner. I thought both were cut up real well, but evidently it wasn't. AND there was no way I was in the mood to go through his vomit to find out. So he is home with me today.

Josh's Friend

2011-11-15T18:34:00.001-07:00

This is J's girlfriend (wink, wink!) I should have posted this back in the summer, but I totally forgot.

This family was our salvation in CO. This family has daughters that took a likin' to J. They would come over and take him and the younger boys out for ice-cream just so I could get a break. When this pretty one left on her mission we actually didn't know how J would react. He would ask about her and we would remind him of where she was. She would bring over little goodies for each of the boys on Valentines and chat with J. Even when he was in a grumpy mood, they still came over. When we moved to Ut, she would make trips and stop by to visit her "boyfriend". I mean, how cute is that!

We had the opportunity of seeing one of the younger sisters at her reception and J was excited to see the "girls" again.

Their love for J will never be forgotten.

What a Weekend!

2011-11-07T10:10:00.001-07:00

Yes, those are teeth. The front bottom two, to be exact!

Let's just say the last part of the week was rough!

We are slowly adding/subtracting meds instead of adding them all at once.

Basically, going back to the drawing board and slowly adding the ones the doctor ordered.

We have gone through many gadget supplies. For some reason J's nights are a lot harder and he becomes more aware of it and kinda OCD's about it. (just for your 411; Autisitic = OCD )

Thankfully Sunday he started calming down a bit and is back at school today.

We did soak the teeth in milk, but was told he would have to be put completely under to have them join his mouth again. Not going to do that, J doesn't have the strength for any surgeries at this time, plus they were not straight, so it wouldn't really matter. There is a hole in his month but only about 3/8 of an inch and...his biting might stop a little :)

Roller coaster Ride...AGAIN!

2011-11-03T07:48:00.001-06:00

This weekend was kinda rocky and I think we are still having issues from it. Evidently there are definite foods J can not have...Not FUN! For instance; Gerplex - we are still debating about this one and seeing if it digests, Hot Dogs - until he chews a lot more NOPE!, Popcorn - What's the boy to do at the movies?, Peanuts or shelled type nuts - seriously? UGH!

We are on 1 week of the new cocktail for night time sleep and it's about 50/50. Today we'll get his blood drawn to see if levels are to high for a particular dose.

I really think there is a blockage somewhere due to his outburst and sudden interest in ripping the WHOLE thing off. Also, how in the world do you make a person tinkle?

You could say it's been a doozy week and it's not over yet!

On a better note, so far a school I think J's been pretty good!

Here I Come!

2011-10-27T10:48:00.000-06:00

We are done (knock on wood and anything else) with Doctor's...for now!

The "Drug" doctor said he's never seen J so happy and interacting. SWEET!

We are trying some a new cocktail of meds at night. Didn't add anything new, just increased here and there...we'll see.

The biggest dilemma is that J is VERY hungry at all hours of the day/night and thinks it's okay to eat all hours of the day/night.

The gadget is sticking now for 3 days, so tonight we will change and actually put a new one on. AMAZING!

So, I think with fingers still crossed that J will be returning to school. Yes, I'm nervous!

But, he's ready and loves life again, so what's stopping him....besides his MOM?!

One Down, One to Go

2011-10-26T09:00:00.000-06:00

Yesterday we saw the surgeon again. Yes, I was a little on the anxiety mode for going back to the hospital. Just not ready to see that place again! But, J was in good spirits. He let the nurses do his vitals and all were good. He has been running a low grade fever of 99.7 for almost 2 weeks, but they say it's normal. Really? He also has lost 12 lbs, which I think isn't too bad considering some lose more. J shouldn't have and doesn't have any to lose, so the trick is, to put it back on! The surgeon gave the okay that everything was going good. Talked to the "wound" nurse and told her our dilemma of the adhesive and she gave some great advice. So we'll try that. J was all in smiles, showing them his little guys. The surgeon made a comment that this was the most he has seen J talk and interact with people and SMILE. That's right folks...IT'S BACK!!!

Onto the 3rd Week

2011-10-22T22:07:00.001-06:00

Well, we have survived another weekend with J home!

He is eating...eating...eating...which is actually a good thing and a bad thing.

A good thing because he has lost a lot of weight and really doesn't have anything left to loose.

A bad thing, well, groceries could run out and trying to find food that he can eat and not choke on is a little on the tricky side.

J's smile is back! Did I mention his smile is back!

He still complains that he doesn't feel good, but we are guessing that is because his stomach is empty.

Gatorade is our friend and the rest of his brothers love it to.

We have all sorts of doctors appointments this week and hopefully we'll get some good news.

Some news of sleepy medicine so he can sleep through the night and not this every 1 1/2 hour crap!

And...maybe venture to school...I know, scary thought for probably both me as the mom and the teachers.

But...he is starting to smile!

An Early Start

2011-10-17T08:27:00.001-06:00

I would say this is almost like writing a book...hmmm...maybe I should do that...21 years of experiences with doctors/ schools (both good, bad and great) and how family has adapted to having a J in the family....hmmm, I think this will be a serious thought!

Let's see, I left off on Saturday. J finally decided to hold things down and Sunday went pretty good. He definitely isn't sleeping much...maybe an hour or less before he gets upset about one thing or another. This will be addressed one week from Wednesday (hopefully!!!!)

Sunday, he actually wanted to eat. I reminded myself as well as reminding Dad, that we needed to go slow on what we fed J. So we did. By dinner time, J was ready for the full blown meal...but again we went slow and just started him with mashed potatoes with ketchup and some jello. Simple, right?!

He didn't sleep well last night at all. The "it" came undone AGAIN! Not completely off, just in some spots...weird..I don't know if it's just not holding on to his skin or what. During the day it's fine...so my thoughts would be that he needs to sleep more and not think about the adhesive that is on him.

Oh, we have found a name for "it"...you know our family and fun names...ready...

It's J's gadget...you know, from Inspector gadget. J is the inspector who has lots of gadgets...that being one of them. It's hidden and no one can see it. We don't want this to become a household name for everyone to use. Although it is kinda cute. Remember what we are talking about and really to talk about it is kinda gross. This name we gave "it" helps us and those that take care of J think of it less gross. Just like with his lama juice, I'm sure not everyone calls their drink...lama juice...it's a J thing and he claims all rights in using it!

I know you might not see the humor, but we do and that's all that matters.

Now, to get some sleep...maybe!

One Step Back

2011-10-15T20:14:00.000-06:00

Yesterday (Friday), J actually wanted his shake of goodness. Yup, you read correct...he drank it all! Hala! Then of course throughout the day we had drinks of his lama juice (without any laxative in it). We even were able to get a small yogurt down him. Yah! With his brothers being busy, Dad and I decided to take J on our date to get take out. We of course just got him a mild...very mild...just cheese...quesadilla. That's were it went wrong! Dad even cut it up into SMALL pieces. NOPE!~

J began throwing up pretty good from 9:00 p.m. on! His temp went way down and about freaked the crud out of me. We called a niece to see what she thought and then called the hospital. We were to watch him and make sure he was breathing (duh) and he had a pulse (double duh) and that his temp didn't go up to high. WHAT?!!!!

He finally fell asleep as did we, but we were awaken by J saying he needed a change. Never a good thing. We found out that while we were sleeping J had thrown up and that "things" had started to leak! NOT GOOD! Knowing that we had a nurse coming by at around 7:30 or 8:00 to help change "it". So Dad took the room while I took J to clean him up. I got the good ole handbook out and tried to follow it with very shaky hands! Showered him and put things back together. WHEW!

He was still not keeping things down when the nurse arrived. But vitals were good, he had a low grade temp and my "work" let's just say she was amazed! One down...many to go. And told us over and over again at how impressed she was at the care we gave to J and how kind we were. Really, how else would we be.?

As of 9:00 this morning, J has been able to finally keep things down. Gatorade and yogurt...and a couple of VERY tiny bits of chocolate...that his Mom was eating (I mean really, I deserved it!)

Lets hope tomorrow is a step forward...we did soooo much laundry, we need a break!!!

2011-10-12T20:35:00.002-06:00

J is HOME!

Update - Saturday

2011-10-08T15:25:00.000-06:00

I know many are wondering and have heard this and that regarding our sweet J. So I will make sure everyone is getting the right story and update.

Wednesday J went in for surgery and the surgery went well. The doctor's exact words were, "It's a beautiful Stoma." Both D and I went back to recovery (remember last year...not fun) and J seemed to be doing well and eating ice chips. They put him on a normal floor. The problem that begin happening was at first they only were giving him an over the counter Tylenol for pain. That's right, how stupid is that! So they tried different things along with giving him an anti nausea medicine. D went back to work and I stayed there all night with J.

This brings us to early Thursday morning.

Around 3 they gave him a new pain medicine that seemed to wear off around 5. So I called the nurse and told her my concern and she said he was allowed pain medicine every 2 hours, so she gave him another dose in his IV. J feel back to sleep and I was at his bed side. Around 5:30 I noticed his breathing was getting a little off and weird. He took a deep breath and would stop or make a clicking sound. He did this twice. The second time, I got up and saw that face no one wants to see. He was glazed over and not breathing...AGAIN!

I hit the call switched, yelled at Josh to breath, there were no nurses around. I haven't the slightest idea how long it was before a nurse came in and I yelled, HE'S NOT BREATHING!!!!

CODE BLUE!

CPR was given, chest pumps and he was intabated. (I haven't the foggiest idea how to spell that)

I don't know how long he was gone for..BUT, he came back.

They put him on oxygen and lots of leads to monitor and moved us to a MICU. It's a step down from ICU but a closer watch then the normal rooms.

This is where J has been. Friday night he started throwing up...dinner from Tuesday, I know gross. So he was put on a strict water diet only to be given when medicine was taken. This morning he was upgraded to jello. His oxygen is having a roller coaster of a time. It's not pneumonia, just his lungs are a little on the clasp side.

The reason we originally went though, is going well.

He just Makes ya Laugh!

2011-09-28T10:36:00.000-06:00

J had a pretty good morning. He was asking for crackers in the shower, and his stomach was rumblin'.

So instead of his normal protein shake, I asked him if he wanted cereal and the answer was yes!

After attempting to eat, pretty good, he laid down and waited while I got ready to take him to school.

In the car, J is usually animated and excited about all the trucks/trains...cars we pass. Today he was a little more quiet. When we finally come to a stop, I glance over and see that J is sleeping. What?

So I asked him, "J, are you sleeping?"

J's reply, "no, I'm sleeping!" and giggles.

Ahhh! the smile just makes your day!

One week 2 Days!

2011-09-26T17:13:00.002-06:00

What I am praying for:

The "I don't feel good" to stop

The "Stop biting me" to stop

The furrow brows indicating the mood J is in.

The smile to come back

The sleep to come back...

Do you think that is too many to ask for?

Today is His Birthday!

2011-09-21T09:47:00.000-06:00

We are definitely riding the "trains" today!

It's getting closer.

2011-09-20T10:25:00.000-06:00

This weekend while I was a way, Dad took care of J. Now, you know J is hurting when after Dad does the "unthinkable" by himself. The next day, J was still uncomfortable. (without going into too much detail) J tried and tried to "relieve" himself, but then told his dad, "It's not working!" Now, that's when you know he's not feeling good and surgery is hopefully going to solve the "not" working problem.

We have decreased one of the night time meds slowly from 5 to now 2. But, I have to say last night wasn't fun. So I have a hmmm type of situation;

Should I call the drug doctor to see if J can be put on something in addition, since we have decreased one of the medicines for night time?

Is he not sleeping because of his stomach and just wait it out for 2 weeks and 1 day more?

Let's just say, we will probably have Sunday music playing at nights and figure out what to play on Sunday. J doesn't like it to play on Sunday when he has heard it all week.

This is just soooo much fun!

2011-09-08T09:49:00.002-06:00

Sleep is good!

3rd Day

2011-09-07T10:09:00.000-06:00

We are on our 3rd day of the med's saga. Oh what a night we had. Who would have thought that a .1 mg could cause soooo much trouble. Yup, that would be my son. J's body knows every little change. So what is the doctor doing about this? We get to wait until he's been off the .1 a week before any changing will happen. Back to the church music! Sorry, but it works! Lot's of DC for Mom and hopefully Dad will be able to get a little sleep before that awful alarm goes off soooo early.

On the lighter side of this, he is having pretty good days at school and eating his lunch.

What to get?

2011-09-06T10:34:00.001-06:00

So J's birthday is coming up...a big one...not the one you are thinking. We have been trying to decide exactly what to give this silly young boy! I mean J has all the little guys you could imagine, has been through all the stickers and gets obsessed with them, which isn't a good thing by the end of the day. Magazines and coloring books are just ripped...soooo? I'm thinking about DVD's and maybe a trax ride..He loves watching the trax. J also carries around his favorite VHS..I mean it's his favorite by the cover being all cracked, broken...etc..you get the picture. I found it on Amazon (bless them) and we will probably get 2 of them. But what about this idea? If anyone that wants to give J a gift, laminate a black and white picture from the internet and we'll make a re-usable coloring book? Yah?! This might be a good idea especially in the hospital. Just a thought for right now. We will definitely be getting some DVD's since they last longer...just which ones? Do you get the VHS's that are now all old and barely work in DVD's or just get the new ones that are coming out? I only have 2 weeks to decide what to do.

AHHHH!

Finish with Doctors...on to Count down!

2011-09-01T19:14:00.000-06:00

Yesterday after traveling for around 30 minutes to reach Dr. Drug, we were able to chat with him a total of 15 minutes in hopes J will sleep.

Really, 15 minutes and that's that?!!!

Here is what "our" plan is....

We slowly decrease on of J's meds he has been on forever and add another.

I know what?

So J takes 5 pills of this one particular medicine. This week we leave it.

Next week we decrease while adding the "new" one...when in actuality, it really isn't new, just more.

then the next week decrease to 3 and each week decrease by 1...so if you all add that up, the week J goes in for surgery he will be off this medicine at night.

Do we think he will sleep?

No clue!

The doctor said if it isn't working to call and come in. Remember the last time I did that and it took 3 months to get in...hmmm!!!!

So I told him about J's surgery and he simply stated, "Well, then we'll just wait and see him after surgery."

Insert whatever "choice" word you would like...I did!

I think this Mom will go to Sams' and stock up on DC!!!!

2 Down...last one next WEEK!

2011-08-24T15:49:00.000-06:00

Yes, we saw the surgeon.

Basically we took a gamble to see if the first surgery would work. Eventually, it hasn't!

There are two ways of doing this surgery. Both can be reversed if J doesn't cooperated and leave things alone.

The first is easy to do then the second, but the second is a better surgery. Make since...that's okay.

The first is a loop job with the bag and it's done through very small incisions but if J's body doesn't cooperate (let's lay bets on this one) then they have to do the 2nd which they make bigger cuts and it's harder to reverse.

We basically put J in the hands of this surgeon not knowing which of the 2 is better. He thought the first and if it doesn't work then we have the option for the 2nd. Both will need some education and some teaching to J of what NOT to do.

When does this all happen: October 5th. So at least he will get a month in at school.

The last doctor (drug) is next Wednesday! I have only been waiting since May to get an appointment with him.

I'm thinking we will change up the night time meds or see if there is something that will knock this boy out, so Dad and I can sleep.

Actually the last 4 nights haven't been as bad as the rest of the summer, so who am I to complain?

Maybe by the holidays we can breathe.

One Down, Two to Go.

2011-08-20T08:03:00.000-06:00

Yesterday we had J's first of 3 doctor's appointments. This was the one with the GI doctor. J went in for the procedure at 11 and by 12 we were in our room. Then the wait, they couldn't get J to sleep (are we surprised a this) until 1 which then the GI doctor was doing another procedure. So we waiting again. We had the same nurse, so she knew all the whistles and bells about J. But the other nurse, who was helping with the GI doctor, would come in with her loud voice and ask if J was sleeping. I finally said that she might want to use her quiet voice if she wanted J to not wake up. DUH! With big decisions ahead, Dad and I wanted to make sure it wasn't something else in J's stomach that was causing the pain. You know like, ulcers, stones...etc. So I asked if he could do that type of examine. Well, he wasn't going that way. Bummer! Literally (hahah)!
I just about sit down in the waiting room and they call me back. Done already? Nope, the GI doctor said that while J was out, why not check that way to just to make sure. So J had both ends looked at. FUN!
They called me back to the recovery room after about 20 minutes and within 10 J was awake. Yes, he doesn't sleep that much. Again...DUH!

Findings:

Nothing is wrong with his stomach, its all normal on the up side.

On the down side, he was very full of BM. No shocker there!

Even with an enema at night and one again right before we left.

Recommendations:

Surgery! The GI doctor said, it was the only answer. He expressed how difficult it might be and what we are in for. So he suggested to see the surgeon (appointment on Tuesday), schedule the surgery and get it on the calendar, then if Dad and I decide not to go through with it, we can always cancel.

Thoughts:

There are none...just numb...again!

First of a few!

2011-08-16T11:19:00.001-06:00

This is the week that we begin the doctors...AGAIN!

We have only been waiting since Mayish.

So, Friday we have a procedure that will hopefully help the stomach from hurting a little.

Tuesday we have the surgeon consult (really not looking forward to that)

Then on the 30th...FINALLY...the drug doctor!

This boy really needs to get some sleep as well as his parents!

Yes, last night he did sleep better, THANK YOU Sunday music!

It just makes you wanna go hmmmm...

What makes Sunday music soo special?

Don't worry, I already know this answer!

Just Funny ~

2011-08-08T08:00:00.001-06:00

We have been up and down with how J's stomach has felt since the end of April. Yes, this is the month for doctor's!!!

Anyways, last night we needed to give him the "unthinkable"...

(this might be a little TMI, but it's sooo funny!)

As I am doing this, J's reply is...

"That was not very nice" bahaha...perfect!

No I didn't do it wrong, it's just his stomach isn't feeling good.

But the comment was priceless and well said.

On a Good Day

2011-08-04T09:18:00.000-06:00

When J is feeling a little better, he likes to go out into the yard and watch the cars. He doesn't car which way they are coming...and sometimes, he yells at them...the bigger the better!

Every now and then he lets the cars know what to do or tries to throw grapes at them. We do get lots of stares and sometimes a rude comment, but remember J does know how to point at cars, so in the end...it's all good!

He also likes to watch for planes to fly over. He just likes the outdoors!

Now What?

2011-07-22T08:51:00.000-06:00

Yesterday was our GI appointment.

Frankly, I don't know if they have us listed as one of "those" parents/patients that always complain.

The reason I say this is because the doctor seemed a little short and just doing a lot of hmm's and ah haa's. Frustrating. So we told her how long J's stomach had been acting and what the symptoms were and what our regular physician had told us to do.

She then leaves the room (mind you, I forgot all the electronic gadgets to entertain J with) and comes back and says she is waiting for another doctor's opinion...I think he is one of the heads.

So she leaves a second time and he comes in with her.

This is the options we were given:

J will go in again for a scope and have "areas" stretched to see if that helps. Last time they did this it only last 1 month. A band aide basically. Then we are to have a visit with the surgeon for the ultimate surgery.

That's right, those are our options, which I don't think are options since #2 doctor said the stretching would only work again for a short time and the other would be a fix...but it's a permanent fix.

Can J handle it? Can we handle it?

Isn't there anything else?

Looks like another long school year for J.

So for right now, I think I need to do some investigating and get over being numb about this whole thing.

AGAIN!

2011-07-21T08:55:00.000-06:00

After waiting for almost 2 months...we get to see J's original GI doctor...not the surgeon...but the GI...

Any clues as to what they will tell us...

Anything we haven't heard already and yet, we are still having sleepless nights, painful tummy aches,

NO BM's unless we do the "unthinkable"...

seriously....

Let's see if they can finally think outside the box...just this once.!!!

Time to get OFF!

2011-06-15T10:58:00.000-06:00

It's time to get off!

J has not been happy!

He says "No" to everything he really wants...Food especially. He won't go to the table...well, maybe 5% of the time...the other time we hold the food in front of him on "his" couch and he keeps saying, "No" as we feed it to him. Yes, he eats it.

I know...it's his stomach!

We have been taking him out on rides, riding his bicycle and letting him watch the cars.

On Monday he went with Dad and I to run some errands. He was very quiet and animated towards the cars. We love this!

Then we get to the post office to drop some wonderful bills off and we let him "drop" it in the hole.

Both Dad and I notice the shaking of his hole arm/hand.

What in the world is going on?

His siblings are gone...it should be a rather pleasant week...

Maybe seeing a movie might cheer him up?

UGH!

And you think your frustrated!!!!

2011-05-23T10:50:00.000-06:00

Thursday J man threw up at school. It wasn't pleasant! It was about 2 hours after he had eated "Apple Jacks"...well, they found a large pill that hadn't been dissolved yet. SERIOUSLY! So I go and get him from school, I'm one of those mothers....and by the time he got home and we got him in the RR to change... Montezuma revenge was upon us. It wasn't good. But we were ready. Poor J, just didn't look or feel good. So what does this mother do, calls the doctor. I get a reply about 2 hours later and explain the whole situation. I was asked if there was any green bile in his throw up...no! It's yellow! Well, evidently when it turns green we need to be concerned. That means there is a bowel obstruction. Seriously, we shouldn't be concerned yet? WOW! Later that afternoon, J is hungry, so we get some fries and sprite, cause that's what he wants. No throw up or anything. The doctor calls and says, it must have been an obstruction and that's how J releases it. WONDERFUL! J started getting color and his happiness back on Friday. Saturday we tried a new medicine that is suppose to help with his stomach crapping. Oh, it did alright, but with all the possibly side effects as well. Usually 95% of people don't get all the side effects, maybe just one or two. But I notice some different behaviors...ADHD type...not yelling hitting...more like too many ants in his pants type...so I read the side effects. This is where it gets funny. A medicine that is suppose to help with cramping of the stomach has these side effects: nausea, headaches, dizziness, constipation, anxiety, hypo-activity, insomnia...etc...

Well, lets just say J has most of them already, this medicine just encouraged them to be more dominate. It did help the pain and he has had some BM's, but there is no way we are giving this to him every day. Oh my heavens. He finally CRASHED on the couch yesterday over 24 hours later and even snored...So, I think his dad and I decided it might be a 1x a week medicine or when we've gone over the 24 without a BM.

HOLY MOLY!

UGHHHH!

2011-05-16T10:32:00.000-06:00

That is to say the least!

It hasn't been easy around here...Why...dumb question...

I don't know what happened around the 28th of April...but that's how long it's been since J's had a good day or rather a day without complaining about his stomach or being upset about it.

So, today we are going to his "normal" doctor to see if she can do something about it.

I know, it's almost a waste of our time and money to go and hear them say, "There's nothing we can do. The surgery worked it's best...J is having BM's"...blah, blah, blah.

Seriously though,

Isn't there something where you can have the muscles in the bum area relax so it doesn't hurt him.

Isn't there a medicine where it can not hurt J when he passes gas or has a BM?

Some people think, that maybe this is how J will be the rest of his life.

SERIOUSLY?!

I don't think you have to live in pain nor do I think there isn't an answer out there...

The question remains...who is brave enough or has the brains to actually research it and figure it out?

New Drug Doctor #4

2011-05-04T21:28:00.000-06:00

Today was the day...finally.

After the insurance, and all the hoops you get to jump around.

We finally had our first appointment with Drug Doctor #4.

If you are wondering why #4, read previous blogs.

I have to admit, I don't know what to name this doctor.

After hearing the history of J and trying to remember when he was put on one med and taken off another,

Dr. #4 was listening and told me that is how we would "handle" J.

Oh my heck!

So I have to come up with a pretty good name...I like Dr. #4.

We got the medicine refills that were needed and then I asked when was the next time we needed to visit.

I was told that was up to me.

WHAT?

I told him maybe after summer is over and the Dr. agreed.

I was told that if for some reason, something happened that needed a Dr.'s attention, we could come in sooner.

Oh MY HEAVENS!

J was pretty quiet and not making to much eye contact unless I tickled and pestered him..but that was alright with the Dr.

Yes, after this appointment, I was almost giggly!

Now, for a name?

You know it's not funny...when...

2011-04-29T23:09:00.000-06:00

Okay, for the last 2 weeks we all know that J's stomach has not been happy. In fact it's been hurting him a lot. So much that he walks a little hunched over.

Here is a story that will make you both giggle and say oooooo...

One of J's brothers is practicing downstairs for a competition the next morning. We also have an older brother and friend (who is accompanying the brother) plus Mom all listening, when who remembers what happens next...we just start laughing about something.

Dad comes down stairs and tell us that J said to stop laughing, that it wasn't funny and his stomach hurt.

Of course we start laughing harder.

J was using the RR when the laughing started and I'm assuming he though we were laughing at him (which he has never thought before, so this means his stomach is really hurting is my guess)

I go upstairs to give him luvs and hugs and tell him everything will be alright.

Poor J was almost in tears.

Really this stomach thing needs to stop so J can laugh with us!

Blah!

2011-04-23T20:17:00.000-06:00

Someone out there has to have some answers!

J has been home since half the family had spring break all week and the rest had it only for a couple of days. I can't decide if it was a good thing or not.

What's wrong you ask...

His stomach!

To the point he says he doesn't want to go to the doctor which in J's terms means he wants to go.

Problem there...

What are they going to do?

This is what will be said if we did go...

"We can increase his golytely, maybe try a new laxative, his body needs time to recover it's only been 5 months since he had major surgery. You (meaning us parents) said that a "bag" wouldn't be a good choice for J and so we just have to adjust.

There you have it...all the answers! But...there has to be something that helps without causing HECK to his system!

We are back to giving unthinkables....he's not wanting to eat unless we bring the food to him and he then 50% of the time comes to join us. He's not sleeping good...again! He's GROUCHY.

But seriously, who wouldn't be a little grouchy with stomach pains that you can't explain.

We hear his stomach making noise, but he doesn't like the feeling and then starts shaking.

It's just plan SAD!

Ideas?

Suggestions?

Remember, this isn't the first time...it goes in cycles and we went through this in February!

Guess What Month It Is?

2011-04-06T11:07:00.001-06:00

That's right!

This whole month is Autism Awareness Month.

Yes, the 2nd of April was the National Recognition for Autism.

But serious, this whole month is dedicated to those children/adults who are Autistic.

So go out, find someone special...Give them a HUG (if they let you)

Smile, say Hi...

Just let them know they are loved!

Phone + Doctors = Frustration!

2011-03-30T09:58:00.000-06:00

Everyone remembers my post about trying to get J a new "medicine" doctor. We have only gone through 3 so far. 2 of which have left the practice or have their own practice or just plain out don't take our insurance while the other...well, that one was Dr. Quack...enough said!
So yesterday I decided it was time to see if the replacement was on our insurance. I called the office that he works at and the receptionist gave me the run around about not being covered on our insurance. WHAT? I'm looking at his name right now on the list. Then she tells me he has a waiting list and he only sees clients on Wednesday. GRRRR
So I began to call...a numerous amount of doctors. This is some of the replies I received; There is either a 2 year wait, 6 month wait, we don't treat someone of that age, we don't treat someone with those disabilities. Holy CRAP!
I called J's primary physician to tell her my frustration and see if she could get us one of the medicines that J will need refilling by the middle of April and if she had any suggestions as to names of people to manage his medicines. I mean seriously people...this is ridiculous!
Something told me to go back to the first original doctor that was "suppose" to take over for our #3 doctor. So I called the office again. Told the receptionist that I was looking for someone to manage J's medicine and that I was told Dr ? was taking over Dr. ? She asked me what insurance I had (first thought was...oh no! Here we go again) so I told her and she said that he could be seen in May...WHAT? So what was the first phone call I made and all the bologna I went through? I'll still need the prescription for April...but it's a start.

WHEW!

Sailing through

2011-03-22T21:41:00.000-06:00

That's right it's that time again...Spring forward. Usually the time change really messes up J's behavior. But I have to say...this time...was a breeze! (Knock on wood) To add to the change, we had company...and I have to say, he did marvelous!

He was a little cranky at first, and not sleeping as much as we would have liked. But I seriously think it was due to the dilating his small intestine to help things move along.

J still has some discomfort, but is pretty much back to being himself. I think it all boils down to is...Patience!

I mean we've been dealing with time changes, temperature changes and stomach problems for 3/4 of his life. Just deal with it. Take the days that are good and leave the bad in the past.

Finally!

2011-03-15T11:02:00.001-06:00

After over 2 weeks of not sleeping through the night and maybe getting 2 to 3ish hours...

WE SLEPT THROUGH THE NIGHT!

Who would have thought that getting more then 3 hours would make you happy?

I was Totally right!

2011-03-09T15:46:00.000-07:00

Today was another day for J in the scopin' mode.

We checked into the hospital at 8:45, he wasn't to sure about that part.

Then we got to venture to the basement, a place I hadn't been yet at the hospital, so that was exciting and J likes the elevator.

They called us back, I let the nurses know all about the way J goes under...

You know the Do's and Don'ts.

It took only a couple of minutes before they called us back to the room where the were performing it.

This is where experience took place and I knew what was going on.

They tried to sedate him with putting stuff in his nose. This is a problem since he is a mouth breather.

It took an additional 3 nurses to help with that.

They gave it to him more then 2x to get him sleepy so the IV could get in.

When we thought he was calm, they tried to start and IV. Let's just say this is always an adventure and more people get involved. At one time we even had the doctor adding sedation to his IV. hahah!

They were out of breath and I just smiled.

I then went to the waiting room, just pulled out my iPod and they tell me it's all done.

WHAT?

Yup, he did good. Oxygen was pretty good.

Results:

They dilated his small intestine to see if that would help. Checked out the surgery spot and everything looks good. Took some biopsy and we'll know that next week.

If...that is a 85% if, there is nothing wrong, then we will have to make the decision of the next surgery that is the last resort.

Oh man!

Here we Go! - AGAIN!

2011-03-01T15:35:00.000-07:00

Remember last Tuesday...not a good day!

Well, today 1 week later, we get a call from the U saying that J's "scoping" will be next Wednesday the 9th.

WHAT?

That said that Dr. Vampire (heeehee..not real name, but a fun one) got a message that this scope was urgent.

SWEET.

So the nurse proceeded to tell me how to check into the U with J. We have to be there at 8:45 in the morning and they think he will be under by 9:30.

BAHAHAHA!

I wonder what they will find?

Throwing the towel in!!!

2011-02-23T09:57:00.000-07:00

So, yesterday didn't go quiet as well as I had hoped. We were up at the U for about 2 1/2 hours and the results where hardly good.

A resident came in and asked a bunch of questions, why we were there, anything different then the Dec. appointment, any pains...concerns...you know the routine questions.

Then we told of our "concerns" and who had sent us back to this doctor.

We were left in the room while the resident talked to the "real" doctor.

We waited, and waited.

The doctor came in and basically said there is nothing he can do.

The sores on J's stomach are the stitches that were suppose to dissolve but didn't and are now making their way to the surface...it's normal...we were told.

He reminded us of the choice we made of not going with the "bag" and taking a risk that J's bum wouldn't relax enough to let the BM's out.

GREAT!

The doctor believed we made the correct choice at the time, but there was always that possibility the surgery wouldn't work.

WHAT?

Because J is also throwing up ever so often when BM's are working, it's a small intestine problem

So back to a different GI doctor to have a scope down and monitor the laxatives J will be put back on to eliminate this problem.

With how severe J's "chronic inertia" was, it could have effected the small intestine to where the small intestine doesn't work any more.

GREAT!

At this point there is nothing any one can do...you need your small intestine.

So, somewhere our there, somebody knows of some type of pill that is easy to dissolve and break up food.

Any one?

Here we Go!

2011-02-22T10:25:00.000-07:00

Today is the day!

After waiting for a couple of weeks, we are finally seeing the surgeon who did this "wonderful" surgery.

Let's all place bets as to what he/she might say....

This is what I'm hoping he might say or do....

There is a kink in the works...here is something that will help break up the foods so it doesn't come up and goes through the right tunnels....

What I think might happen.

"There is nothing we can do, his body needs time to heal....go back on the laxatives"

UGHHHH!

Another thing we are having the doctor look at...J has some (we think) infection in part of the longer scar.

JOYS!

Hopefully there is medicine that can dissolve fast enough to help that out.

Maybe it will be a good day, where the doctor can answer why J throws up, or why he is not standing up straight (he was the only brother that had perfect posture...until his older brother started BR)

These and a few other questions, I'm prayin will be answered.

Tune in later...for the answers or maybe the frustrations...

Weird

2011-02-16T10:57:00.000-07:00

This was very weird.

J seemed fine when I picked him up from school. They said he had a good day...well, that changed once we started for the car. He started making that gagging noise...the noise right before the throw up...

I thought maybe he was choking on a cracker and asked if he was alright.

I opened my car door and he did it again...a couple of times. Great...you know what might happen in you know who's car. Thankfully we made it home without an accident.

He said he needed to go throw up and went to the bathroom. Then the "gates" were opened. Poor child!

I won't go into detail.

I then gave him a couple of sips of a Capri Sun with his noon meds in hope they wouldn't bounce and come up. Well, 1 hour later...it did...good thing we still cover our couch. Let's just say this happened all day and into the night. We were able to get tiny sips of Sprite down him and it would last for about 10 to 15 minutes. Our physician in Co once said if we could keep it down him for that long, then chances were he wouldn't get dehydrated. Our fingers were crossed. Our neighbor in the meadow came over to help administer a blessing to him (thank you sooo much). J then went up and threw up one more time.

He didn't go to sleep right off and we didn't want to give him more meds so we were praying that he would be weak enough for his stomach to settle and get some rest.

Thankfully he did.

This morning we have been on small sips of Sprite. So far so good...If we haven't thrown up by noon we might add a cracker.

So what caused this?

I haven't a clue.

Maybe something he ate at school?

I'm still waiting to hear if they went into the community on an activity to get something to eat and J somehow got food poisoning.

I just don't know and it's just sooo random.

So he's home and will probably be home tomorrow to get back eating.

It's a bummer, he was doing so good to...

One step forward...two steps back!

Doing GREAT...except sleep!

2011-02-15T09:35:00.000-07:00

After the throwing up episode we had, J has seemed to be handling things pretty well.

Everything is moving accordingly and he even tells us before they move (you get the idea)

After soooooo many years...SWEET!

And....while on our way to see a very awesome movie, I was showing his Dad how J can spell his name.

So, cool! He gets all the letters except the last two...which I think is pretty good considering no one has ever been able to do that and it was all verbal!

YAH! His teachers are helping him use sentences to ask for items while the other classmates use the pec system. J had been on a pec system while in CO, but it really never worked since he does speak and can communicate his needs....most of the time.

So there has definitely been progress at this wonderful school he attends!

Now, we just have to get him back to sleeping more then 1 to 3 hours a night. It's getting old.

On the positive side of this....there hasn't been any...I mean ANY behaviors that have been negative....

(knocking on wood!)

Happy Day!

Update on all the updates!

2011-02-12T16:40:00.000-07:00

Geez, does this title ever get old?

So we went to his primary care physician and everything is normal...well, almost.

The doctor thought it was a good idea to see the surgeon again and to have everyone on the same page, meaning the doctor, the surgeon, and the GI doctor. That appointment is on the 22nd.

Medicines are the same, although we have notice a slight difference in J with the generic of his behavioral medicine. Not bad, just a little more OCD and unsettled. His sleep pattern is also WAY off!

J's been complaining more about his head hurting and we've found that when he does need to use the restroom he complains more about "it" hurting. Hopefully they can give him something for this...

He's had I think pretty good days at school and even went to seminary on Friday which he hasn't done in like forever.

Oh....he loved the movie Gnomeo and Juliet!

Sick

2011-02-02T10:33:00.000-07:00

It's a good thing I have doctor's appointment all lined up for this month.

This morning, J was in such a good mood. Slept good, drank his shake good...until I heard the gagging noise.

I ran downstairs and he was laying down and it was not a pleasant sight! He was all white and helpless.

I really think there is a problem.

Maybe J's food doesn't know which way to go?

Yup, this is a problem.

Maybe he'll feel better tomorrow.

Fingers crossed!

GI update...again for the umpteenth time!

2011-01-31T21:36:00.000-07:00

Today I was just fed up with lack of sleep, eat and tempers that J's been having!

So I called the GI doctor and told the secretary a thing or two.

20 minutes later, she called, very concerned that J had a fever...NO fever!

She'll have to talk with the GI and get back to me.

She called later in the day saying with all of J's symptoms that J needed to see the original surgeon.

WHAT?

So I called the surgeon and of course left a message.

The secretary then calls back and I tell her what's going on.

Strange...is her reply!

"Have you tried prune juice, miralax...etc"

I thought this surgery was suppose to fix all the laxatives that he's been taking.

Hmmmm is what was said next.

So yes, we have an appointment with the surgeon to see if he knows anything on the 22nd of February.

We have an appointment on the 8th with the Primary doctor, just cause...

Do you think we'll get answers?

I mean, we aren't talking about a text book child here...SERIOUSLY!

Let's see if there is any doctor out there who will admit they haven't a clue and would like to find answers for us!~

Grumpy is an Understatement!

2011-01-30T17:20:00.000-07:00

This is basically a warning for those working with J tomorrow... this week and until we find out what the heck is going on with his stomach he will be GROUCHY!~ But I think moving around might help. There will be tantrums...just saying. He's had little relief, but we've found that Mt.Dew is back to doing it's powerful calming like it use to when he was little. Weird, I know...but we gave him some yesterday (yes, it was mine) and he calmed down and even slept a little. AMAZING! His sleep is just a wee bit better, but the stomach...he won't eat unless he's fed to and is on a kick of saying "No" when in reality I think he means yes...Oh the joys...

I'm just hoping he makes it to Wednesday, due to an appointment I have with another school and another child. Not saying that J's school needs to babysit, well, kinda...but just until the appointment is over. I'll keep my fingers crossed that he will be nicer.....you might want to wear yucky clothes...Just saying!

Helpless

2011-01-28T08:55:00.000-07:00

Another night without hardly any sleep. It's like a circle of life or a roller coaster that we keep getting on and forgetting what happens in the end. J's stomach is not happy. I don't know why and this doesn't sit well for a Mom not knowing how to help. He has a doc's appointment on the 8th with his regular physician. Maybe it's that I'm scared he might have to go back in, or the surgery didn't work. I looked on line to see other's people comments about this surgery and they all are doing fine, exactly what is to be expected. I know J is unique, but seriously, I don't think he should be complaining that he doesn't feel good or his stomach hurts. He is curled up most of the time, and then just add those behaviors we had a little break from. His smile is gone and I guess that is just what kills me the most. I just wished someone knew something or had the guts to find out something instead of relying on J's parents for answers. WE DON'T HAVE THEM.

Again....

2011-01-27T18:16:00.002-07:00

Enough said!

Sick

2011-01-25T15:33:00.000-07:00

Alright, I get it...or do I. J doesn't feel good. His stomach hurts.

WHAT'S NEW!

Getting Meds!

2011-01-24T16:05:00.000-07:00

Talk about confusing! I called J's primary care physician to see if she/he could fill J's medicine. Then I called the pharmacy to tell them of our predicament. Well, one of the medicines are ready, the anxiety one. WHEW!

Then the primary care doctor's assistant called and said I was only going to get a months refill. WHAT?

So I proceeded to tell her of the !@#$ we have gone through to find a "drug" doctor.

She said she would relay the message back to the "real" doctor and see what she wants to do.

Okay, so....we all know how the insurance takes forever and a day to say yes to new doctors...If this individual we are suppose to see comes in February, he won't be approved until summer. Just how things work.

So, do I try and find another?

See if J's primary physician knows of one?

At least we are getting some medicine...

Now...

As for his stomach....

Let's just say, it's not working well! Back to giving him 4 laxatives and still nothing.

So we've gone 24 hours of nothing and so the "unthinkable" will happen tonight.

Can anyone tell me where it's going if it's not going out? HMMMM?!

Still hearing the "I don't feel good", but behaviors that usually come with it are no longer.

You really feel helpless!

Welcome to J-LAND!

Refills!!!

2011-01-22T19:05:00.001-07:00

We all know that J is on medication, some stronger then others. Usually you have to wait for a grace period to get these medications refilled...I believe within 3 days of when you need them. Honestly, if I have a couple left, I look at the last time we refilled and then call up the pharmacy.

Well, we were getting pretty low on one of his anxiety meds, this one I don't have on auto refill...should have!

I also noticed his BIG behavior one was getting low and both were filled the 20th of December, so I was well within the time line of getting them refilled.

The behavior one has a new prescription written for it, so I thought, I might as well go down and give them the newly written prescription and fill the anxiety one, which I had 3 more refills on.

Here's the problem. Evidently the anxiety one has expired! Oh CRAP! I ask them if there is anyway I could just pay for 4 to get us through til Monday when I call the doctor (remember she is not going to be his doctor for very long). Nope! They said because it's one of "those" drugs that people sell to get money, they couldn't do it. WHAT?!!! Even though I still had 3 refills left, they wouldn't do it.
Then....
The behavior one, for some reason the doctor's number wasn't getting approved by one of the insurances. Thankfully we do have enough until maybe...Tuesday.
Guess what I'll be doing on Monday...ASAP...
Calling J's primary care doctor and telling her what's going on.
Because of all this frustration, I checked his other medicine. The ones that helps J sleep, it expired also...
Good thing we have enough to last a little while on that.
So, we are trying to make the anxiety one last by cutting it up. So far, so good.
Monday, might not be so good.
I also think it was because there was new people filling the medicine. The usual ones that have helped us before weren't there.
BUMMER!

Questions....again....

2011-01-19T10:33:00.001-07:00

So when do you start to worry about how the surgery went?

We are on 8 weeks.

J's stomach is still bothering him, well...not every day...it just seems like more days then not.

We are still having to give him over the counter laxatives...2 at night and 1 in the morning.

CRAZY!

With this surgery, you would have thought he wouldn't need it. But seriously, "things" still aren't moving!

Last night, J complained about not feeling good so Dad and I did the "unthinkable" again.

SERIOUSLY...is this normal.

I know, J isn't normal, he is writing his own book on this surgery.

I know his small intestine has been working over time for SOOO many years and doesn't know what to do now.

So how long do you wait until you call the doctor?

J is still eating pretty good, does any one know if there are food that can't be digested as well as others? Do you think we need to give an overload of liquid (meaning juices and such) to help move "things" long?

Someone out there must know...

AHHHH!

Seriously!

2011-01-11T16:00:00.000-07:00

Communication is the key!

I think some people need to communicate with each other to know what the heck is going on with J.

It has barely been 7 weeks since his surgery.

REMEMBER THIS!

He is only going to school for 3 days. Monday - Wednesday...that's all J can handle physically right now.

These days will be half days...he is SUPPER tired when he gets home.

Thus...no meds given at school, because I pick him up before the noon ones should be given.

I haven't the slightest idea when he will be doing full days...we have to go slow!

Maybe in February we will see if he can go for a week...HALF days first.

We were told by the surgeon that it could take a while...so we are not rushing anything!

Remember COMMUNICATION!

Three Forward...four back!

2011-01-09T11:11:00.000-07:00

We are not feeling good again. By we...J-man.

He 3 wonderful days at school, then something hit..I don't know if it's the weather or his stomach..but something did.

Thursday we went to the drug doctor and he wasn't as happy about getting ready as earlier in the week. Then it seemed as if it just went down hill from there.

Friday was the same...just didn't want to do anything. Slept alot...maybe the three days of school really wore him out. I don't know.

He is still eating, but complains that "it's bitting". He said this alot in the hospital, so I'm assuming it's his stomach.

I have to remind myself...it's only been 6 weeks...major surgery...we will have ups and downs.

So today was alittle on the down side. He did drink his shake, but a little more grumpy.

Hmmm...

Good thing tomorrow is a new week. Maybe we'll just do 3 days of school until he can handle that. It's not his behaviors I'm worried about, they are soooo minor now, but it's his body...

Remember, we are taking this slow...That's what I have to keep saying to myself.

New Drug Doctor.....HMMMM.....

2011-01-06T17:21:00.000-07:00

Today was suppose to be the day we met J's new "drug" doctor. Well, we went and met her. Then we found out that she is quiting this practice and starting her own, but not taking our Insurance. WHAT? Seriously! So of course there is someone "right out of school" that will be taking her place. A man! Should I trust him? Maybe he'll turn out to be like Dr. Quack? I'm to call in a couple of weeks to get J's name on his list and then we really don't have to see him til Summer time. We aren't changing J's meds...he still needs time to recover from surgery and his behavior is doing mighty good lately. So....Do I stick with this practice or find another office? Opinions, suggestions? This is really getting ridiculous!

The "new" doctor did say she would write his prescriptions until a new one would take over...

How nice!

2nd Day Back

2011-01-04T15:43:00.000-07:00

So J has been back to school now 2 days and I think it's going pretty good. We still only take him for half day and will continue that for a while until his strength is back to normal...When will that be? Who knows? J still doesn't like to use the restroom, but he knows when we get home, he hangs his jacket and then goes right to the "facility." (this part might be a little PG) I stand and wait in the room and kinda make the sound of grunting to get him started...then the rest is up to him. So far we are 2 for 2 in trying this. Progress. We see the new "drug" doctor on Thursday. I'm not having her adjust anything yet. Maybe summer time, but his body is still in major recovery. All in all, things are back to being happy, with the occasional small bump here and there.

STITCHES

2011-01-01T22:19:00.000-07:00

Oh my heavens.....guess what we just found...

So tonight I was giving all the family (men-folk) hair cuts.

J was the first to receive a hair cut. He hasn't had one since way before surgery, so it really needed a good cut. Well, so I'm using the electric razor for the bottom of his head and go pretty slow because I don't really remember where his head wound was.

That's when I found them. That's right...the stitches. Remember J had to have both staples and stitches in his head.

It's been over 5 weeks!

So, I give them a little snip. He wouldn't let me pull them out, so we finished the hair cut.

Right before his night time meds began, 3 of us "comforted" him and I took the tweezers to get the remainder out.

Let's just say there was some hairs that came out as well, but they had yellow gunk on it...GROSS!

We had a flashlight and looked to see if there was any more infection. Nope, there wasn't.

So....do you think for 5 weeks, he could have been a little cranky due to his head hurting? Hmmm?

He's happy for now and all stitches are out and wounds are healing.

This years Goals

2011-01-01T10:24:00.000-07:00

This years goals:

Stay out of the Hospital

Feel Better

Be Happy

Go To School

Be Happy

Sleep longer!

What do you do?

2010-12-28T21:10:00.000-07:00

So what do you do when J complains that his stomach hurts?

If his stomach hurts, then behaviors occur...so now what?

Do we go back to laxatives?

We were told that if J doesn't have a BM for a 24 hour period then...yes, give him a laxative.

But....when he is using the "facility" and says it hurts...then what?

Do you think it's his body still getting use to how it's suppose to work?

He is eating...munching...and all that...but can it build up somewhere and cause a blockage?

Answers would help!

Get Over IT!

2010-12-22T13:48:00.000-07:00

It's been brought to my attention...

Autistic Children: Hit, Bite, Scream, Yell and many other things....

AND?!

(I am not speaking about my child's teachers/aides...so don't even think that)

For the parents, the teachers and aides that work with Autistic children;

GET over the bad...holy cow...

They bring joy, love, life and laughter to your homes.

They complete your home.

They are apart of your family.

If all you can find is the negative about having one of these special spirits..

You don't deserve to be a part of their lives.

On a lighter note...can I just say how wonderful my son's teacher is...she is a gem!

I love his school and the fact that they actually care about these special children.

I'm hoping them all a wonderful holiday season..

Hope to see them soon!

Answers!

2010-12-14T19:48:00.000-07:00

Here are the answers to the questions down below.

Having one bowel is okay...normal people (not J) would have 4 to 5 bowels...so 1 is better then none.
If we don't have a bowel for 24 hours we can give him a laxative at night...no worries.
J can eat anything...nothing we have to watch for. WHEW.

Some other questions that I asked...how long exactly does it take for recovery? Usually people take 6 to 8 weeks and then when they go to work they are usually wiped out. So we are thinking J might take until summer to get his strength back...I was reminded it was MAJOR surgery. We also we commended on how his dad and I stayed 24/7 to watch and make sure J was taken care of. GOLD STAR!

We weren't able to get the blood drawn...another story there for later...so Dad will take J as soon as possible, they don't like his lack of coloring. They thought he would have lost 10 or more pounds but he actually only lost around 5ish pounds...That's right...it's his mamas cookin!

It just looks like a long road ahead, but a positive one.

Doc. Appointment

2010-12-14T11:01:00.000-07:00

Today J has his follow up with the surgeon. They will also check his kidney's with a blood draw.

Some of the questions that will be addressed:

Why is J only having maybe 1 BM a day and sometimes goes 24 hours without one?

Do we need to give him laxatives again?

Is there a certain diet or foods that aren't as easy to digest as others?

How do we make J happy again?

"I Have to Eat My Food"

2010-12-06T19:24:00.000-07:00

Leave it to our Italian meal to get J to eat. It's a recipe that the Italian son taught us and has become one of J's favorite. So when the boys and I sat down to eat, we prepared a little bowl for J with some juice. J doesn't like taking his juice in a container in fear (I think) that medicine might be there...so we have a cup with a straw along side this Italian dish. Basically he is licking the bowl clean and asked for another bowl. J is telling us that "he needs to eat his food"! YAH! YIPEE! It's a start.

Well, yesterday we started with a little cheese..cause he can eat that now and not worry about the constipation problem. Then Aunt Becky and Uncle Doug came over and brought cookies and yoplait smoothies they found at Costco. So this morning I whipped one up and he drank a little

(diluted with more milk, cause it was really thick)

This is a huge step! He is drinking a lot of liquids which will help his kidneys..his head seems to be fine...now we are just getting his strength back. He asks if he can go back to school...Joy to a mothers ear.

Life is looking good!

I'm HOME!

2010-12-02T17:42:00.000-07:00

J is home. Recovery will be long, but he is home and breathing. WHEW! He is on antibiotics for his kidneys still but that will eventually get better. J's eating isn't to wonderful...but he is home and the surgery is working.

Thank you for your prayers and concern. He will be a happy camper when it's time to return to school.

A Couple of Days

2010-12-01T09:41:00.000-07:00

That's all I get from the doctor's. Maybe in a couple of days J will be able to go home. Seriously?! They are still taking his blood and seeing what the kidneys are doing. They made the silly suggestion of sending J home with a catheder still attached...okay, that would just be terrible and yucky...I think that is why we opted not to have the colonoscapy bag surgery...duh! They did say he could go home on what he's eaten here...details on that would be in the blog below. So...basically we are just watching him again today..They will converse with each other and let me know, probably again tomorrow morning around 5:30 or 6:00 when I'm wide awake and coherent.
I think J and I might redecorate this room...Just kidding, have to find humor is standing here. We have almost gone through all the nurses/aides/technicians...It's a good thing I told the school he wouldn't be there this month. He'll barely be recovering by Christmas and I'm sure it will be slow moving for a couple of months.

When is Pudding Yucky?

2010-11-30T16:26:00.000-07:00

J had a rough night last night. Let's just say he was very thirsty which really isn't a bad thing, but every 5 minutes, wasn't fun. Then from about 4 am on his IV kept goin off every 4 minutes. Right as they would calm the beeping noise down and it seemed as though J was going back to sleep 2 minutes later...beeping! The doctors came in at 5:30 and just simply said they were running more blood work and that they would be "watching" J. It's later in the day and I haven't seen them again, so what really does it mean to doctors to be "watching" J?

We have tried to get him to eat some eggs this morning, since he likes them at home...but no go on that. So I asked for yogurt and yup...he ate it. The nutritionist came in to discuss lunch and dinner. I thought for sure J would love k-sadillas (hahah) and fries..but he wouldn't even eat that. So more yogurt for him. Getting him to eat pudding which he loves...is a huge chore. Some nurse might say I'm mean, but I won't give him any more "soda" until he has a bite of pudding...yes, I'm being serious...I mean, who doesn't want pudding? Crazy!

So for dinner he is having yogurt, pudding and mash potatoes with chicken gravy..We should take bets to see if he actually eats anything. I told the nutritionist about the shakes I had made for J for breakfast and she's going to make him one tomorrow. YAH!

I really want to know how much longer we have here.....Patients!

Repeating My Self

2010-11-29T08:31:00.000-07:00

I feel like I'm repeating my self in the updates. If those that read this want the full story, go to our families web site or email me and I'll direct you to it. J is still in the hospital, his vitals are finally stable. His body is basically taking longer to jump to attention then normal. Which if you think about it...is normal for J. He just doesn't want to be the textbook patient and I think they are finally realizing it. Maybe they will make a book about him. :) I think overall J is in good spirits and asks to go home and eat a hamburger. This is a good sign compared to what was happening last week.

Saturday

2010-11-27T07:54:00.000-07:00

I'm probably counting the days in the hospital wrong. So the last post meaning Thursday. So for the right counting, today (Saturday) is the 5th day in the hospital.

Last night J slept a little better. Still throwing up here and there...having bowels (this is good)

It's going to be long though.

He started to show some type of rash on the left side of the stomach which they think are shingles since he's had chicken pox. Seriously, one more thing to add to J while he is trying to get out of this place.

Over all, the nurses have been good. Most of the doctors (interns, student...white jacket people) have been good. The head of his surgery will be back in town today or tomorrow, but he's even called about J's condition while on vacation...It reminds me of a wonderful doctor in CO that did that.

I've only had a conflict with one of the "interns" from last night...ohhh, did she make me mad!

So...story time.

J was doing alright, so a student doctor came in and said we could slowly start giving him Popsicles. YAH! food!

So I knew to go slow and it was his job to tell me that. I even waited about 30 minutes in between Popsicles to make sure he didn't throw it up. He was holding them down pretty good, which was exciting. I was on Popsicle #3 (remember they are the thin ones) when this intern (grrr) came in and told me to stop because he was throwing up. I told her that he hadn't thrown up any of the Popsicles and that I was going slow...yup, didn't listen and said they would just increase his IV...like J is going to know he is getting something to eat via the arm. RIGHT! Then while checking J's stomach out, She kept telling him she was going to look at his stomach, and getting louder with each of J's complaints. I finally told her it didn't matter how loud she gets, just do the exam. Then J said, "I don't want a Popsicle"...meaning the opposite of course. She referred to it and said that J was telling me he didn't want any more any ways, I tried to tell her that it's a game we play, but again.. she wasn't listening.

I voiced my complaint about her bedside manner to the nurse and she said as soon as the "real" doctor showed up to tell him, and he'd take care of it. Well, this morning the on call staff came in, she being one of them, but she didn't do the talking, the head intern did. I listened and heard what they had to say and didn't look at the "she-devil" once.

I think most of the doctors/nurses working with J know he's not going to be text book care. "She-Devil" just needs to get with the program.

So how much longer do we have in the hospital...I don't have a clue...

A little relief - Day 4

2010-11-25T07:30:00.000-07:00

I'm not going to say it's been easy....it's been....(fill in the blank)

I think the hardest day was the second onto the third. J wasn't cooperating with everything that was going on.

Went through a couple of IVs...yes, he pulled them out or broke the tubing. When he doesn't like it, he'll get rid of it. The pain medicine was making him have more anxiety and obsessive then usual. The nurses actually thought this is how J really is at home. After a long 3rd day with Dad, I was able to relieve him. Seeing how J was acting, I suggested that they changed the pain medicine. A sister had told me that her husband had problems with this particular drug and suggested it. I am so grateful to her for mentioning it. The new pain medicine really helped. He does get a little "mad", but nothing like before and it takes a quicker effect...at least that is what I think. He was able to doze off and on during the night and has even made some jokes and commented on what is being watched on TV.

So the goals for today at the hospital....get the catheter out and get J walking around. As soon as he passes gas, they will let him have food. Remember he hasn't had food since last Friday so technically it's been almost a week. He is liking Sprite to drink, which is wonderful over yucky ice chips.

Progress is being made....just slowly.

WHEW

2010-11-22T17:47:00.002-07:00

It's 5:30 on Monday and we are done.....WHEW...amen....etc, etc! Surgery went a little longer then expected, but nothing new. J's colon was referred to as floppy and large. DUH! VERY large....yup, that's why it didn't work! They don't know if this particular surgery will solve the problem due to a large bottom (rectum..TMI) The doctor won't let him go home until he knows for sure that everything, and I mean everything is working. So for now he is on an ice chip diet til tomorrow.

It's Time

2010-11-21T19:05:00.000-07:00

We check into the U at 6:00 a.m.

The nurse called on Friday and really wanted to know all about J and what would make him comfortable.

HUGH relief! A+++ for that nurse.

I was told only the best would be working on J...

HUGH relief!

So....surgery begins at 7:20, that is if they can actually get J under...out...sleeping.

It will last approximately 3 hours. Then...who knows...

Don't worry...I keep this updated.

Fingers, prayers, and all that jazz that it will work!

The Time is Drawing near....

2010-11-17T10:21:00.000-07:00

With less then 1 week away from major surgery, J is doing fantastic. We have found that he's really not a morning person, but seriously...what teenager/adult is. I've been told by his teachers and those working with him that he has been a lot of fun and it's only Wednesday. No, he knows nothing about what will happen next week. I'm sure J will feel the stress and worried level his family will have by Sunday.

He still complains a little about his stomach, but eats normal and always wants more.

Where it goes...yah...that will be interesting.

So the plan is to call the hospital on Friday and get instructions on what will happen...meds...etc.

Saturday begin his yummy liquid diet and continue it through Sunday

(the surgeon wanted an extra day to try and clean him out)

Then hopefully the weather will be good to drive in on Monday when he will be checked in at 6:30 a.m.

The surgery will take 3 hours and won't officially start until 7:30ish...that is if they can get him under.

It will be interesting to say the least, but updates will be posted.

2 Weeks!

2010-11-08T11:15:00.000-07:00

Okay, so it's been a while since I updated...a whopin 3 or so days...but hey, life is busy! We took a little break from school on Thursday and Friday to see if J's stomach would settle a little. It was rough going, but by Saturday things had started to calm a little. His stomach is still full of shtuff...but it's moving a little bit more and he's not as angry with sitting on the "throne" He does get mad at anything, but I think redirecting is working pretty good. He's very munchy which we have to watch because whatever goes in...some day will come out. So, back to school he went on this wet morning. He was happy about it until he fell asleep (15 minutes before leaving). But wasn't throwing his wigs or anything like that to go. Just hesitant. Once we got in the car, he was all smiles, and very talkative. J has also enjoyed listening to 106.5 where they have been playing Christmas music. I think he had joined me in the love of this particular season. With it being a shorter week, I'm hoping J makes it through will little to none wigs...unhappiness...etc, etc.

NO SLEEP!

2010-11-02T11:49:00.000-06:00

Any suggestions....this is not fun. I just went to the store and bought 12 enemas! No, I'm not going to give them to J all at once...but we are allowed to do 2x a day if needed. I'm hoping that with walking, maybe 1x will be good enough. I'm just hoping that school wasn't a nightmare. Maybe, he slept all day....cause he didn't sleep a wink last night. It's good that both Dad and I take turns handling him.

21 days and counting!

2010-11-01T22:49:00.000-06:00

This is how J has been since about Friday nightish....

This is a warning for the up coming weeks. It's not even daylight savings day yet, so I really can't blame it on that and his meds...

The one thing I do know is that he is very uncomfortable. His dad and I are assuming that there is a blockage in his bowels, yet once again. Haven't a clue why...but there is.

He shakes when he is sitting, when you can get him to sit on the toilet, so something must be hurting. We've tried everything.

We even did the leg exercises we did when he was a baby and colicky. That only seemed to bring some noises from down under..and still more pain. This my friends is why the surgery is a blessing.

To give you an example of how strong J is and how much pain he can endure...Sunday while some of the family were doing church business, his brother and I were trying to change him. J didn't want to sit on the "thrown" and it took both of us to get him to partially sit, that means squatting. It takes a lot of muscles for that. When J wouldn't relax, we proceeded to put him in the shower in case an accident were to occur. I gave him the unthinkable and while holding it in, standing in the shower and fighting with 2 people nothing happened. His brother is now envious of the muscle strength J has. He was able to release a little, but there is more pain, which means more inside that won't come down. I know a little TMI, but this is what's going on.

I haven't a clue what school will be like. We've clipped his nails..but the hair pulling is back as well as any of the other behaviors we have all enjoyed coming across. (joking) I really need to find cheap shirts!

Isn't it sad when you look forward to a surgery that could change the whole realm of things?

The Date is Set!

2010-10-19T19:17:00.000-06:00

Surgery will be on the 22nd of November. J will be in for over a week, generally people of the "normal" relm are there in the hospital for a week, but because J is so unique..it will be a bit longer. Recovery time will be 3 or more weeks. Basically J will be done with school on the 19th until the "New Year"...heehee. Christmas will be spent at home with the whole family and possibly a happy J-Man. If you want details...more is explained in the other blog.

Tomorrow is Almost here

2010-10-18T22:04:00.000-06:00

J is feeling it...I think. He's been kinda outa sorts this last weekend...the moon is in the wrong sky maybe. Short fuse, not eating to much...this sounds way to familiar. Maybe he feels the anxiety his mom and dad are feeling for tomorrows appointment...that's right, it's the appointment with the surgeon. Not to find out what to do next, not to try something new, but to find out when, where, what type of surgery will go on. I'm keeping him home from school...even after I thought today would be rougher then it was...he has angels, what can I say! But with the anxiety his mother already has and the car situations with the other brothers getting here and there...who the heck needed more to worry about. SERIOUSLY! So by this time tomorrow (fingers crossed) we'll know what is going to help J not have so many stomach aches.

WHEW!!!!

2010-10-13T16:05:00.000-06:00

It's DONE!

We got kinda lost at the UofU, but thankfully the surgeon's secretary was there and helped us find our way.

She gave us the good luck spill. Really nice though.

Then we went back...AHHHH

They wanted J to tighten and relax throughout the process...

hahahahaha

He did really good considering and the nurse was so patient and helped with

a wonderful voice and cues that Dad was giving to J.

I was taking the front end.

End result (no pun intended...)

No shirts ripped...

Mom got 2 scratches...nothing big...

I think it went rather well...until Mom slipped on a curb and rolled her ankle.

It was definitely time for a shake or special treat!

Last Test

2010-10-11T16:16:00.000-06:00

J's last test was cancelled due to being in the hospital..

Well it's scheduled for this Wednesday at 1:30

So, we'll go to school long enough for his IEP

and then pick up a brother to help with the test.

Next step....Tuesday the 19th is when we hear what's going to happen.

Home Sweet Home

2010-10-06T15:50:00.000-06:00

J is home!

Everything is clearing up.

He will have a cough for a while.

On big pills to get rid of the remaining bacteria.

We cancelled one of the test that was for today...to much on both J and Mom.

He did have one of the two x-rays done. The next x-ray is on Friday then back to the laxatives and eating...

Maybe Monday he'll be back at school.

He did receive a wonderful card from his friends and LOVED IT!

Thank you all!

A Very Sick Boy

2010-10-05T17:34:00.000-06:00

Without realizing how sick J was...let's just say REALLY sick.

He is currently in the hospital, but...good news...

Fever is gone,

Oxygen is back up to normal

Might be coming home tomorrow if the bacteria is leaving his lungs.

WHEW!!!

Yes, the tests will still go through with his BM's.

Here goes "The Week"

2010-10-03T22:31:00.000-06:00

Silly boy!

He's SICK!

Seriously...this week of all weeks...

Coughing,

running a 101.6 fever,

not wanting to eat!

Oh my heavens!

That's right folks...J is sick. I haven't a clue what to do. We still need to start the "lego" pill so that x-ray's and the other test can be done before his next appointment on the 19th. Do I call the primary doctor? He's already going to be in a mood without his "poo" medicine...now this?

So, without buying any special drink for the mamma, it looks like we might have to! :)

I doubt he goes to school...just not feeling good...toe is still black and blue and now he's complaining that it hurts. What hurts? Who knows...sometimes J says it's his toe, sometimes, it's his back, sometimes it's his stomach....UGHHHH!

I know, patience...it's only Sunday night!

He even spit out his meds...seriously, when was the last time he did this?

Don't remind me...it's gonna be a doozy!

Answer some questions

2010-10-01T09:06:00.001-06:00

First, this doctor is just basically running test we have had done before. So it's nothing new. He's not the GI, he's the surgeon who will be operating on J. The GI doctor's that have seen J before have run these test. The surgeon just wants it done more throughly so he doesn't make a mistake when talking about the different surgeries that will take place. Second, there will be surgeries done. We just don't know how serious or in depth the surgery will be. We do know it will take place around the holidays. This isn't an easy answer, in fact it's a scary decision that his father and I will make. Seeing J so happy this past week just answers all the questions of where/when his behaviors occur. It's when his stomach is upset or his constipated. I'm sure his school will agree on this. Think about it. This surgery could take a behavior away, we could see a whole new J. He could gain weight and eat!
The surgeon said this isn't a quick fix. Nothing is! But, it could fix the pain J is in, it could fix the constipation problem, it could fix the cocktail of medicine he is on for his bowels. Which it means less medicine to give him and we could sometime in the near future see if he has to be on soo many behavioral medicines.
I'm trusting this surgeon with my sons stomach (plus doing a little research)...isn't that what faith is all about?

More Testing

2010-09-28T20:51:00.001-06:00

This was the day where we were going to see what J was having done to help his chronic BM problem. He was excited (actually I think he was thinking he was going to school, because he took his hat off and laid his little guys in his hat) I told him he could wear his hat and take his "little guys" with us. We got some gas and then as we entered the freeway I told J we were going to the doctor's. He was more interested in going under the bridge and catching the cars.

As we checked in and they were doing vitals on J, a nurse (maybe a 1st year or a 1st day) asked me a silly question. I was hoping the doctor wasn't this "silly" The question that was asked was, "When did J get his disabilities?" What? I have never been asked that. I seriously didn't know. I replied, "You mean his Autistic and Mental Retardation?" Silence...then I said, "You mean when he was diagnosed?" Yah, I'm sure that is what she meant...silly nurse!

The doctor came in and started asking about the test J had done but used words that had more vowels, letters then I had heard before. So I simply asked him to please say them in "Lamans" terms...

He did and I was relieved. We went through J's pass and things that had been done in CO as well as here. There is really no easy answer. 2 types of surgery were given.

1st - a procedure where they insert a tube directly into his colon and the golytyel will be given that way so that it can quickly dissolve the BM's faster.

or...

2nd - remove the colon which means he would wear a bad (I'm guessing)

I asked the doctor if there was a surgery where they could just remove the colon that isn't working and reconnect it to the part that is...NOPE.

Hmmmmm...

There isn't an easy fix. I told the doctor, that I knew that, there is never an easy fix when it comes to J. He is not a text book person!

The doctor wants to run 2 more test...the swallowing of the "Lego" pill and get his stomach x-rayed on the 3rd and 5th day instead of what we had done previously where we just got it x-rayed on the 5th day.

He also wanted J to have a test done where they put this cream on his rectum and watch him poop. I asked how in heaven's name does he think they will accomplish this. J isn't potty trained. I told him how we get J to use the restroom and that it was a hit or miss when it came to BM's So we are NOT doing that test.

The last test will be where they insert a small tube in the rectum and see how the muscles work. This will be while J is awake. I told the doctor he'd better have nurses to help hold him down and he replied, "Really?" bahahaha!

There is no way J would let that happen while being awake. So I told him I'd bring my son and we'd handle it. He was concerned that J would get hurt while being held down and I told him the only people that might get hurt would be my son and I...but we were use to it...(need to buy yucky shirts!)

So here is the timeline:

Next week I have to take him off most of his laxative meds (behavior will be NOT FUN!) we have the x-ray's done and the muscle test done...that means he will miss Wednesday school. Then we'll start all the laxatives and enemas on Friday night after the last x-ray. We have an appointment with the doctor again to discuss the results on the 19th of October...

He has told me that usually surgery will be schedule no later then 6 weeks out...That would mean Thanksgiving week! JOY!

This doctor also said that he would personally take care of J and that the residents won't be involved. I have nothing against residents but J is not a learning tool.

Any questions? UGHHHHH!

This is the WEEK!

2010-09-26T20:18:00.000-06:00

I know everyone has been wondering how J's week went...I do have to say it went pretty well, only a little glitch on Friday, but nothing the angels of school teachers couldn't handle. This made me think, why he might have had this....no bowels for a while...great! So, off to the store to get the unthinkable.

(he needed one anyways for his appointment on Tuesday)

Then the weekend came...not to bad...then Sunday morning came...not to good!

I haven't a clue what went wrong, but boy is J antsy...the moon is set in the wrong sky, the weather meter is off...something...OCD has taken over, and has even given J the shakes.

Maybe he can sense what is about to happen for his appointment, which would be a miracle, since I haven't a clue what they are going to say...maybe it's the anticipation? All I know, is at church today he participated well...(he wasn't suppose to!) Thankfully the speaker lives in the meadow with us and knows J. So when the speaker asked one of those thinking type questions, J replied out loud. Yes, it was quiet the show for those around us or those who heard...which by the way was the WHOLE congregation.

So I'm hoping for more sleep from J, and answers.

Really...is that to much to ask?