Monday, May 21, 2012

Breaks my heart... a Josh update

I have been struggling all week with this post. I have been trying to decide whether to do a brief post and pictures... or to be brutely honest about everything and say it all. After some thought, I have decided to go the brutely honest way... so this will be very detailed. Consider yourself warned:)

All of this nightmare began on April 18th. I assume anyway. I am pretty sure that was the last day that Josh was able to poop on his own without additional meds (besides the 4 he is on daily). On April 27th... after Josh was complaining (in his own way) and I had added all the additional meds and stuff I could do at home, I called his GI doctor. She was worried about an obstruction. She sent us down to Primary Children's Medical Center's ER to have some tests done. We got there, got in a room and the resident doctor decided to do an enema. She told me it would work in 20 min. It didn't. An hour later they did a second one. It didn't work either. An hour later they did a suppository. He pooped a little and it was not constipated poop like it has always been in the past. I started to worry. They got an x-ray and he did not have an obstruction or look like he was constipated. They sent us home with instructions to come back in 24 hours if he did not continue to poop. He had a LOT in there still. Of course Josh being Josh... didn't poop again and continued to complain of his tummy hurting. So I gave him extra time and waited until sunday morning (36 hours later) to return to the ER.

He was not a fan of this idea. He was signing candy... go.....outside... anything he could think of.

He just plain did not feel good.

He was falling asleep in my arms... which anyone that knows Josh... would know that it is so far from normal it's scary. He was shutting down on me.

After the ER took more x-rays to see if there was an obstruction, they clearly didn't know what to do. I told them I was really worried and 100% sure this was a motility problem and that no matter what I did... he would not go. At this time he was on double doses of two of his meds, I was giving him 3 adult doses of Miralax a day and had done something called Magnesium Citrate. That is our big guns. Doing that has never failed us before. But it did this time. I started to really worry that this problem was much bigger than I had ever imagined. When some trauma's came in through the ER we basically got ignored. I had several different resident's come in and suggest me using more Miralax. Really? Cuz I had NEVER thought of that. They would die when I told them how much we had already done and were doing. Nobody seemed to have a clue what to do. I told them several times that Josh is a mystery and has had every test and biopsy done that his GI doc could possibly think to do and we don't have any more answers other than this is caused by his Microcephaly. Finally after disagreeing with what the on-call GI doctor said to do... we left the ER. I knew we could talk to Dr. O'Gorman the next day.

So Monday rolls around and I finally get in touch with Molly (sorry... she likes to be called Molly...Josh knows her as Dr. Molly) and she vents a bit about how frustrated she was with the ER and that they let him go TWICE with his x-rays looking like they did. She decides to do something called 'Golytely' over night. It is the same stuff you use to clean out for a colonoscopy. Plus we added a few 'extras' for good measure. She lets me do it overnight at home and not back at the hospital like they usually do. We hook him up to the stuff and run him at 150cc an hour (keep in mind the most we ever run him an hour is 100cc) for 10 hours straight. We get up that tuesday morning (this is May 1st) and we wait for poop. And wait and wait. Finally about 2pm he goes a little. Then again a while later.... then again... and finally a 4th time around 6pm. Not what I was hoping for (amount wise) and it was NOT constipated poop. Molly agreed with me the day before that we are dealing with a really bad dysmotility problem.

So I thought we were in the clear. NOT!!!!

He never poops again. So the rest of the week goes by and everyday I keep waiting for his system to get going again. Nothing. By friday I was starting to worry, but it was the weekend and I knew I had to wait until monday to talk to Molly again.

Monday comes around. I call the medical assistant and wait by the phone. Nobody calls. I leave another message. No phone call. Tuesday morning I get up and start calling the medical assistant again. Still no return phone call. I was mad and frustrated. I call the scheduling line to ask about Molly's schedule. I find out she is doing procedures all day. So I realize the medical assistant might not even be there. But it's 4:30pm and I know it's too late. We go another night. Here we are on our 8th day again with no poop. I get up wednesday morning and call again. Kaitlyn had a field trip that day and so we still went although in hindsight I probably should have left him home. He was hurting and not himself. I FINALLY hear from Molly around 2pm. She had just gotten the messages I had been calling. She wanted me to bring Josh back to PCMC then to have a Saline Enema with Contrast to check for some things. I told her it was going to be hard to get there right then. (It totally sucks living an hour away from the hospital). So we agree to do it the next morning (May 10th). I get babysitting all arranged and off we go on thursday. In case you have no idea what a Enema with contrast is.... here is the grisly details. They insert a catheter in Josh's rectum, tape it in so nothing can leak out. They hang a bag of saline with a special dye in it that shows up on x-ray. They take a live x-ray,called Flourascopy, and it's done by the radiologist himself. While doing this, they insert about 2 liters of fluid. After they were done they told me they would lay the bag of saline under the table to let gravity work and get the fluid out and hopefully some poop too. They wanted another x-ray after all the fluid was out. Of course nothing came back out. So they took the tube out and put a diaper back on and wanted him to walk around the x-ray room. As soon as he got down... I knew this was not going to go well. His stomach was HUGE. He almost threw up immedietly. He was crying and not able to stand up straight. They waited and waited for 10 minutes for the fluid to come out. It didn't. They talked to the radiologist and said they had enough info... he could just go home because they needed the room for more procedures.

SO against my better judgment and mommy instincts I took Josh home. Getting him even belted in his carseat was a joke. I had to readjust the straps to fit around his huge tummy. He was clearly not doing well. I hurry and pick up the other kids from my mom and go home. As soon as we got home I took this pictures of his tummy.

Not good. I was actually scared to touch him. It was that bad. He laid down in the fetal position on our couch and cried. He wanted me to hold him.

About an hour after being home... he started to throw up violently. I started calling his GI doctor again... but it was her procedure day again (she does 2 a week every so often). I called radiology to tell them what happened. They tell me to head to the ER. I decided since I can't put anything in his tube or mouth to help.... can't do anything like an enema anymore... I had no choice. I won't lie... this was the first time I broke down and really cried. After dealing with all this for as long as I had... I was done. I got a call from Joe, who is the nurse with the Dysphasia (feeding) clinic and has helped me in the past. Somehow someone from Radiology had gotten the message to him and he told me to go to the ER and he would let Molly know. We love Joe. He was so great to help me during my little break help me calm down and be rational about packing a bag and stuff.

I decide on my drive down to PCMC that I am going to be that mean, in your face mom. I was going to refuse to leave the ER until Josh was doing better. I was not going to leave until he was cleaned out and better. I was all prepared to fight. So I was pleasantly surprised that when we finally got checked in, had our exam room.... the doctor walked in and told me that he was being admitted. No why are you here... maybe you should give him some more meds... ect. Just a ticket to the 3rd floor. Our GI doc had came through and was VERY specific that Josh not be messed with down in the ER. No x-rays, no talk of more meds, no enema's. Just sent up to the Medical Floor. I have to tell you how relieved I was. Now someone else can be in charge of him medically and I can be the mommy.

Although I was thinking we would just be there overnight.. not 4 nights. I didn't expect to have the complications we had. But again... Josh never has followed the 'normal' path... so why would he now?

We arrived late thursday night in good old room 3027 and they got him hooked up with the Golytely again. I learned something though... when you do golytely... you keep running it through until it comes out clear again. Interesting. After getting him settled... some big bolus' of IV fluids in (because believe it or not... even with soooo much fluid in his gut.... he was dehydrated quite a bit) they started measuring his abdominal girth. He measured at 56cm. They started him on a slow rate and increased it slowly. About 8am the new nurse looked at his stomach and was worried it was getting bigger. We measured. It was now at 60cm. So they shut down the golytely and we got sent down for an x-ray. They were floored at how much stool and fluid from the day before was in there. All I know is the report said 'Significant amounts of stool' and 'impressive'.... awesome. So they decided to push through anyway and restarted the golytely, but at a slower rate and a slower increase. He did pretty good with it throughout the day on friday. Although he was not himself. And that is saying it mildly. He layed in his bed and didn't seem coherant or even responsive most of the time. He had shut down more than I had ever seen him. It was down right scary. He would look at me at times.. but it was like he was just seeing through me.

Even when I pulled out his iPad for him...he really didn't comprehend what was going on. It was soo heartbreaking.

His day nurse on Friday wanted to cheer him up and found him a package of cars. This was the most awake he was the entire day.

Friday night they did his measurements on his tummy at 8pm. It was down to 54 cm!! I was thinking we were kicking this problem in the butt. About an hour later I was checking him to see is he needed to be changed again and noticed his tummy looking really huge.... like really HUGE. I hit the call light and his nurse came in and was shocked. She did another measurment and it was 63cm. She paged the doctor who happened to be just one pod over and she came right away. She started talking about maybe we had a blockage or something and we rushed him down to x-ray. Thankfully it turned out to be air... but it was strange because it was not moving through his system either. The Dr on call was really perplexed. I was just glad it wasn't something worse. It about gave me a heart attack. We got him all settled back in and they turned off his golytely stuff and let him have a rest overnight.

One thing we did find out is how bad Josh really does not have the ability to regulate his temperature. We already knew he had this problem, but I have never actively taken his temp. like they do in the hospital. It would actually drop 2 degrees... and hang out around 96* at times... which is why I took this picture. It took us bundling him up with 3 warm blankets from the warmer and his comforter thing to get him back up to 98*. For the most part he was lower than higher.. but he did go up to 100* once too. It totally was an eye opener.

Finally on Sunday I got some smiles! What a great Mother's Day it was to see him even acknowledge me and want to have his cars in his lap. He still had not gotten out of bed at all since being admitted and was refusing to even stand up. It was so hard to see him struggle so bad.

About 11am on sunday morning we started him back on his feeds. They actually listened to me and did it a little slower than the orders were written for. He seemed to be tolerating the formula. We took a break from IV fluids and he went on his first walk about 4pm. I was excited hoping that this meant he was finally back. It was short lived. About 5pm he started vomiting and I was so sad to see that we had to shut off his feeds and start the IV fluids back up. I was really hoping to get home the next day. About 2am ( monday morning) we started the formula back up again, but this time they started him at 10cc an hour and went up 10cc every hour until we hit 100cc. He also had half formula, half pedialyte too. He did really well this time around. He even got out of bed and played!

We were discharged at 2:30pm on monday (may 14th). He was cleaned out and his tummy was less distended, but not back to normal. After 5 days I was sooo happy to get out of there.

But this is far from over. In fact as I am typing this post it is technically monday the 21st (don't judge me for being up at 2am... ) and Josh has not pooped since we left the hospital. We left the hospital with big increases to over -the -maximum doses of all his meds that help with motility and pooping. Yesterday Josh swallowed something called 'Sitz Markers'. We will go back to PCMC on thursday to see where they are in his GI system. The reason we are doing this is because we moving toward doing surgery for Josh. We are looking at doing something called an 'appendicostomy'. It is hard to explain so when I have more information I will let you know. But basically it is a tube that will be inserted through his belly  button and appendix for us to basically do internal enema's daily. We have exhausted all medicine options for Josh and are now looking at more invasive procedures to help his quality of life.

The GI doctor on call while we were in the hospital is Molly's partner. He gave us a second opinion and he also thinks that this is a really good option for Josh. He drew this drawing on our board to show us what the appendicostomy is. I thought it was funny so I took a picture.

So for now we wait. We wait for poop. How many people can say that? LOL!!

I am very curious to see what the x-rays will show on thursday. I really am done with this night mare. I want my Josh  back. I am tired of him hurting. I am tired of the daily stress this is causing me. I don't sleep well... I can't seem to get back into 'life'. I feel like I am stuck on a roller coaster that is out of control and at any minute things might just fall apart.

Sigh... but such is life with a special needs kid.... with a lot of medical needs.


Anonymous said...

So sorry to hear. Scott and you are the best and toughest parents I know. You guys are in our prayers. The Simmons' will do the poop dance for Josh.

Brittany said...

I am so sorry. That is just heartbreaking. We'll keep you all in our prayers

Tanya said...

I am so glad he's got a couple good doctors so willing to help you all. I hope you get the answers you need. You're all in our prayers... (((HUGS)))

charity said...

that has to be so hard seeing him not be able to go and not really being able to help him. very heartbreaking for sure

Unknown said...
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Unknown said...

My daughter just had her appendicostomy last week. To say I understand what you are going through is an understatement. When she was six months old she went 21 days without pooing. She had four biopsies, was seen by multiple GI specialists, had anal manometry studies done, the sitz marker test(showed that she had no motility in the last 4 cms of her colon above her rectum), MRI's done for tethered spinal cord, Barium xrays with the contrast and tube in the tush, she was on 3 capfuls of miralax a day (a feat that most doctors literally didn't believe), sennekot, and karo syrup. She still didn't go. We started doing rectal irrigations which for the first three months didn't work. Finally, the surgeon went in under sedation and cleaned her out using massive amounts of saline and glycerin and we continued the irrigations daily at home through her bum. They decided after months of testing to proceed with the appendicostomy with the Chait Trapdoor. BEST decision ever!!! If I can answer any of your questions, I'd love to, and if I don't have the answer, I'm here as a shoulder to cry on. I know how frustrating it can be to see your baby in pain and not be able to help. Huge hugs to you for all you have been through!

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