Thursday, November 15, 2012

We have a plan!!!!

We have a plan! I am so over the moon excited to have a plan to get Josh healthier and stable! It took quite some time to get to this point with LOTS of waiting and wondering if I was ever going to get the doctors to figure something out.

So that being said..... here is our plan:

Monday at 2pm Josh will be admitted at Primary Children's to have a Central line placed (or PICC line if that makes more sense). He will be starting TPN (Total Parenteral Nutrition) or IV nutrition. This will do a few things for him. First of all, it will help him get the nutrients he needs and has been needing for so long now. It will also let us do some 'gut rest' to buy us some time. While he is on TPN, his GI doctor is going to call Boston and Cincinnati Children's hospital and get a consult on Josh. We will also be doing his spinal tap on Dec. 14th to see if we can find some answers from a neurological standpoint. Our hope is that with some gut rest, and getting more tests done... we might be able to avoid a colostomy all together and maybe figure out something else to avoid surgery. We have never done 'gut rest' so this may just be something his colon needs right now. I am being hopefully optimistic that this IS going to work. I don't want to do a colostomy. I don't. I really don't.

So here is to hoping! I will update after he is discharged and I get everything set up with Home Health Care.

Thursday, November 1, 2012

Information Overload :/

Have you ever felt like you had such an information overload that you have no idea where to begin? Yep... that's us.

I haven't updated in a bit becuase I haven't really had any new info to talk about. We have just been in survival mode with Josh. He had a Feeding Clinic appt last wednesday and finally saw the GI personally. She wasn't happy with Josh's current situation and quickly got the ball rolling to work on getting him stable. She upped his calories to 1200 a day and added a second dose to an appetite stimulant. She ordered several tests to be done including more labs, and EKG (to check his heart) and a contrast study through his appendicostomy. I finally felt like we had somewhere to start with him. There was a lot of discussion on future things and where we might be going. She wanted to see him again in 6 weeks and then phone call updates weekly.
Fast forward 2 days.
Josh was out of school last friday. He was not himself and really irritable. He got really sleepy/lethargic about 10:30 am. He complained about his tummy hurting. I also saw him digging at his appendicostomy site. I checked things and he seemed OK. At noon I did his meds and changed his diaper and still his ACE looked the same. 
Then about 10 minutes later he climbed on the couch and went to sleep. Very unheard of. While sleeping I sat by him on the couch because I was worried. He was really restless and moaned alot and grabbed his stomach.

After he woke up he got off the couch and immediately fell to the ground and complained about his ACE tube hurting. So I decided to look at it again. 2 hours since I had looked at it and now there was red starting to spread everywhere. I texted this picture to a couple of my tubie moms and they all told me to head to the ER..looked like cellulitis.

So after finding help with the other kids, I headed to Primary Children's to the ER. They took more xrays because he was so distended looking and then blood work to make sure the cellulitis (yes... my tubie mom's were right... they rock!) wasn't bad enough to need IV antibiotics. We were discharged with 2 antibiotics and a concern about his spine. (will explain later)
Now fast forward again to yesterday. We had an appointment with Dr. Murphy, the Special Care doctor. I have had a few of my special needs moms here in Utah tell me that I should be going to her. I finally had gotten to the end of my rope a month or so ago and called to get an appt.
Before our appt though, we had to do the contrast study through his ACE tube. I was really anxious about this because I have wanted to know what was going on when did his flushes. The biggest thing we noticed right off the bat was his ascending colon was large. It held all 500ml of saline with room to spare. The radiologist was able to get enough contrast over the transverse colon and down the descending colon almost to the rectum to see there was no strictures or abnormalities. But his colon was large. The radiologist told me he would empty out within minutes of ending this test. But he doesn't know my son. Of course he didn't empty out at all. We left radiology and went to do his EKG. His stomach was so large that he couldn't stand up straight or even get comfortable no matter what. It was heartbreaking to watch. After EKG was over, we headed to the appt with Dr. Murphy.
She was AMAZING! She was so thorough and was able to tell me things about Josh that I didn't know... or explain things to me in better ways. But since he had the contrast test done and nothing had came out, that took first priority. We went through the radiologist findings of Josh's test and looked at the images. She agreed that this wasn't looking good at all and they immediately got on the phone to track down our GI doc to talk to her about the test. In the meantime we got wound care to come down and work with his GJ tube and we finally got some new supplies ordered to try and help him out (his GJ tube was bleeding that morning). She did a very good physical exam and said she is sure he has scoliosis now, which explains why his spine is starting to curve. With all that he has going on, we are putting that eval on the back burner. But we will be looked at that in the future. She mentioned that she wants an MRI of his spine to see if he has a tethered spinal cord. I don't even have time to think or process this bit of info right now. 
While we were talking our GI doctor (Dr. O'Gorman, or Molly as Josh knows her) called back to talk to Dr. Murphy. She advised that she was not comfortable sending Josh home with so much contrast in his system and wanted an abdominal x-ray to see where the contrast was now. So we headed over to radiology (again) and got another x-ray. On my way over I snapped this following picture of his orders....just because I sometimes can't believe all his diagnosis (and a few that didn't pertain to yesterday are missing)..

So anyway, we got the x-ray and it basically showed that his colon is very large, very dilated all thoroughout and basically just a mess all over. If we had not had that appt and stayed at the hospital and got that second x-ray, we might not have known how bad his colon is now. Sad.
So Dr. Murphy is going to be finding a time to have some sort of a conference to have all Josh's doctors meet or at least conference call together so they can all be on the same page for treatment. This is what I have wanted for so long. Dr. Murphy told me she would be my go between for whatever I need. Exactly what Josh needs...someone who can get what he needs, when he needs it.
And she is even helping me to get things that I didn't know if it was possible. She just sat down and said...."what can we do for Josh and you to make his life better? What equipment do we need to get you?" I have never had that question asked before!
So we left the clinic with some good things in the works. We are going to be getting Josh a special needs stroller for older kids. Right now I have him in our normal Graco stroller...which his head hits the canopy and feet hit the floor. Not good. This way for safety risks we can keep him contained and he also doesn't have to walk all over on our long marathon hospital days. She also wants us to have a handicap placard for our van. I laughed when she suggested that. But then she told me that she is concerned for his safety in parking lots. She wants us to be able to park up front, get him in and out without walking far and risking him being hit by cars. And she doesn't even know how many close calls we have had with him. She said she doesn't see him understanding safety issues for years... if ever. I hadn't thought of that. So we will be getting a handicap placard I guess:)
And we are also going to be looking at getting Josh a new bed. A medical bed of some sort. Something that will keep him safe, help get him elevated so I don't have to bend over so far and then keep his head a bit elevated because of night feeds/reflux/vomiting ect. I am so excited at the idea of having a stroller to keep him safe and a bed to keep him safe. He is getting just big enough that things aren't working so well.
It was a great appointment!
Now last night after our huge day, Josh finally did some pooping. I was so glad... he was sooooo distended. I took this picture about 10 days ago... but this still shows you how bloated he has been looking.
But this morning, after about 3 full diapers of poop... no change in his bloating. I was concerned. But he seemed happy so I sent him to school anyway. About 11:15 I got a call from his aide at school. He was not doing well. He was doubling over in pain alot, whining his tummy hurt and grabbing at his ACE tube. I guess they went to change another poopy diaper and when the aide was putting the stuff in the trash Josh (who had been standing next to her)doubled over and then hit the floor and screamed. So they called me and told me to hurry and get there. When I got there he had calmed down, but she bluntly told me she didn't feel comfortable dealing with him like this. So I brought him home. I got another good look at his tummy and he was still as bloated looking as ever. He complained of pain in his tummy and back. I put a call in to his GI doctor and turned his feeding pump off. He kinda layed around, played a bit and was just generally uncomfortable the rest of the afternoon.
I finally got a call back from his GI doc at 5 tonight. She told me that she wants to give him the weekend to see if his colon will shrink back down at all, or if he will start to feel better. We will talk again on monday. But she told me that it looks like if there is no change, then we are looking at starting Josh on TPN (IV nutrition for those of you who don't know what that is)which means he will need to have a central line placed. Then we would be moving forward with a colostomy. The TPN wouldn't be permanent of course..but I don't know how long he would be on it. And as far as the colostomy is concerned.... she didn't tell me if that was a permanent thing, or just for specific amount of time. I know that when your colon gets this bad, it can take months... sometimes years for it to shrink back down to normal (if it does at all). So we didn't get into that part, but it seems like the last ditch effort is here. My poor warrior boy has been through so much, and it is not over. He is not well. Even though he is happy for the most part and runs around still.... he is very sick. The special care doctor told me that she hopes I will be taking extreme precautions for Josh this cold/flu season. She told me that she is worried that if he ends up with a cold or flu it could be life threatening for him at this point. That was a tough pill to swallow.
So this weekend we will be doing what we can to help him be as comfortable as possible and wait for what next week will bring.
We love our sweet boy. He is true warrior in every sense of the word,

Sunday, October 7, 2012

Another Hospital Stay:(

Josh and I got to spend last weekend in the hospital... again:(
As I have said before, Josh hasn't been doing well since surgery on Augast 15th. The appendicostomy or ACE is working, but the side effects are horrendous. He vomits and passes out, cries and pukes some more. A handful of times he has also been having seizures. The cleanouts are effective and the numerous xrays that we have had over the last 7+ weeks show his colon looking better than ever, with no stool build up.
After the worst reactions we have had so far two weeks ago, I was pushed way beyond my comfort zone. I think I just snapped and couldn't take it anymore. During this time the Colorectal Clinic decided Josh was too complicated for them and turned him over to GI for everything, including managing his flushes... which they normally do. They said Josh's reactions were something they had never seen before and didn't feel comfortable with him.
So fast forward to Sept 28th.....
After talking to the nurse for Dr. O'Gorman all week about Josh it was suggested we might have to do an inpatient stay to figure out what was going wrong. With our schedule and Scott working to pass his test this coming monday for his new job, we decided to go ahead and hit the ER and be admitted.
Before we were admitted the attending ER doc and pediatrician for PCMC wanted to see what happens when we do a flush. They were flabbergasted at his reaction.

It was then decided to do a Video EEG during his hospital stay to see if he was having seizures we werent' aware of, and try to catch one while he was having these passing out episodes. He was a trooper as usual and handled his "super hero hat" as we called it, extremely well. Every single new nurse, tech or resident doctor that came in our room had to acknowledge his "super hero hat".

At times he felt up to playing with his iPad, but it was a rough stay.. .they continued to do flush after flush with made him vomit a ton and sleep alot. It wasn't fun..... that is all I am saying.

                              And these pictures about sum up how he felt the whole time.

Child Life did show up and brought him this race track with cars. He loved it when he felt up to playing with it. And as usual for our hospital stays we watched Transformers over and over.

While we were there the motorcycle club BACA (Bikers Against Child Abuse) came with about 50 motorcycles and a Santa Clause and passed out presents and tattoos for the kids. Josh wasn't able to go down to the lobby, but his friend Jonah (who was a patient a few rooms over) brought Josh his gift back. I wish we could have gone down because I think Josh would have LOVED it. But we were hooked to his EEG and he couldn't go.

We were discharged on sunday after 48 hours in the hospital. With no answers and no plan. This was a very frustrating thing for me. Everyone that was involved with Josh's care was very concerned over his reactions, but nobody has any idea why these flushes bring on such a reaction in him. The resident we had both daytime days, took quite the interest in Josh and did some research and came up with a pretty good theory. I am not going to get into the details of it right now, since GI hasn't had a chance to come up with a plan or even give me any input on what they think is going on. The hospital stay wasn't a waste of time since we were able to get about 40 hours of video EEG and I have documented proof of what is going on with Josh. But nobody has a good plan or idea of where to go right now. It is a hard pill to swallow.

Although Josh did not have any of his seizure episodes while we were there so I have no idea if we are any closer to  answers there either. But.... I received a call from his neurologist office on monday (day after discharge) that Dr. Filloux wants to see Josh tomorrow morning. So I am not sure what made that happen this fast, but I am happy to have some prayers answered. I have called numerous times and told them what is going on with Josh and the soonest they could get him in with his neuro was Jan. 7th. So this is indeed a good thing.

Now I will leave you with a picture of Josh passed out during a flush. This is not OK. And nobody can convince me that we can go on like this. It has to stop.

Thursday, September 27, 2012


This is my sweet boy.
This is my unhealthy skinny warrior boy,  with a distended tummy to top it off:(
He is looking so scary thin now. He's lost 5 pounds.
This is my unhealthy skinny warrior boy,  with a distended tummy to top it off:(
Josh isn't doing well. I am finally going to be brutally honest. He scares the crap out of me. And we have been through alot in his 5 years. But I am at a loss and feel so overwhelmed and feel like nobody cares. Meaning doctors. I think they all think I am exaggerating how bad things have gotten. But I haven't. I promise.
The colorectal clinic who managed the large intestine/colon problem and also performed his appendicostomy (ACE) procedure, told me on monday that Josh is too complex for them and they no longer can help him. They are turning him back over, to GI to fix everything, including his flushes. Sigh....not what a scared mama wants to hear.
But we will persevere and make it through this. I refuse to believe that there isn't a way to have his flushes work without him passing out, vomiting and having seizures.
We are going to try a small change in his flush.... switch out glycerin for Castile Soap. If that doesn't work... which I know it won't because the problems are bigger.... we will be admitted to Primary Children's to find out and get to the bottom of what's going on. I almost just want to head there now and say we won't leave until my sweet boy is doing better.....because at least the neuro on call for the hospital will HAVE to help us then.
It makes me nervous. And so very sad for me sweet boy.

Sunday, September 9, 2012

Warrior Boy!!!!!!!

I wanted to get this post up long before now. But after you read this.... and it will be long, but I hope you stick with me, you'll understand why it has taken me sooo long to get this done. And I do apologize for the length. But I wanted to include a bunch of pictures:)
First of all, about two weeks before Josh had his surgery I became aware of an organization called "Tubie Friends". It is an amazing organization that makes stuffed animals with g-tubes to help little kids understand what the G-tube is for and to help them feel more comfortable. I was trying to find a way to talk to Josh about his upcoming appendicostomy and didn't have any grand ideas. So when I found this I emailed the founder and asked about having one for Josh with two tubes, since he would be having two tubes. She was amazing and not only agreed to do it, but also made sure it got here before his surgery so we could use it and take it with us to the hospital. Here is his 'tubie friend' and a short video of him the day we received it. I am forever grateful for this amazing idea! 


Now onto surgery. I will warn you now.... if you are squeamish about medical procedures with pictures... you might want to be careful about looking too closely at some of the pictures. Just saying:)
We had to check into Primary Children's a day early to have a cleanout done before surgery. This is right after we got settled in our room and the Child Life Specialist had came to give Josh some things to help him understand what was going to happen. He was going to have an IV placed and they let him practice on this doll. He loved it and was kept very busy with the stuff they gave him. He colored his doll and put an ID bracelet on, a mask (even though we never used masks) and even a heart monitor sticker. It was good for him and I really think it helped this time around.


Also on tuesday (surgery was wednesday), we got a visit from a therapy dog. Josh was beyond excited to see a dog in the hospital and was so elated they let her come in and get on his bed with him. The dog's name was Liberty and she is a standard poodle. I got a cute video of him with Liberty. It was another great thing we haven't had the opportunity to do before.

And now the really not so fun stuff. Josh was supposed to do a cleanout and be ready for surgery at 12:15 on wednesday. To say the cleanout didn't go as planned and well is a massive understatement. I skipped tuesday night's sleep totally because we were running down to radiology to get emergency xrays because of sudden bloating about every two hours. We were doing enema's hourly trying to get his system to get moving. I don't know why he struggled so bad with this, but I am very suspicious of the 'Golytely' that they began with. He does not do well on that and true to form... he had some vitals that were showing the same thing as last time. I think if we had not done that and just did enema's we would have had MUCH better results. But he wasn't in as bad of shape when we were admitted so I thought we would be fine with the Golytely this time. WRONG. So between the stress of the cleanout not happening, surgery time coming up very quickly and me having to have a confrontation with the surgeon... I was a mess! The reason I had to have a confrontation with Dr. Rollins was because of the way I wanted things done. I wanted him to place a Mini-One button, which is a feeding tube button, the same as he had for his stomach, but a tad bit smaller. I had found out that nobody has done the procedure this way in Utah and I wasn't so sure anymore I could get what I wanted and what I knew would be best for Josh. Thank goodness when Dr. Rollins came to talk to me he was happy to do the G-tube button, but was just honest with me and told me he would have to do the surgery different, he hadn't ever done it this way before and he didn't know until he got into the OR how he was going to need to adapt. But he told me that this was about Josh and he agreed that even though we are pioneers at doing surgery this way, he would also keep Josh's best interests in mind. So I was finally feeling good. A little apprehensive because I wasn't aware that he would be doing something he hadn't ever done before. But I was also worried about him not doing surgery at all since Josh's bowels were not cleaning out the way they were supposed to. Thank goodness Dr. Rollins said he would just push it back to the last surgery of the day to give him more time and he would do it regardless of his success or not at the cleanout. Bless his heart!
Surgery took 2 hours and 45 min and went very well. Dr. Rollins came to the waiting room and told me he was very pleasantly surprised with how it turned out and that it was easier than he thought it was going to be. There are some downfalls to how we did the surgery, and there are future issues that we may or may not ever have to deal with. Time will tell. Josh also was supposed to get a new tube put into one of his ears while under, but the surgeon who did it (it wasn't his usual ENT because it was such late notice... so we took whoever what in the OR that day) actually ended up replacing both ears. This is set number 5. Let's hope this is the LAST time we do this. Right? But that went well too and I was so thankful to get two birds with one stone.
So here is my baby boy. True to Josh fashion, he curled up into the fetal position after we got back to our room and stayed there for awhile. They nurses had a hard time getting his blood pressure cuff on, pulse ox probe and heart monitors because he was so tightly curled up. He took awhile to wake up, but it was nice being inpatient so there was no hurry.

This is after he finally woke up for longer than a couple minutes. He had gotten out of surgery at 7pm and this was like 11pm now.

This is his appendicostomy tube. He also had an incision covered by cotton balls down his belly button and the two bandaids covered the laproscopic sites. I knew about the incision in his belly button, but was surprised he had two more cuts as well. SURPRISE!

I won't lie and say this was easy. It was so incredibly difficult to see how much pain he was in. He would cringe at every little movement and my eyes would tear up and I would think.. 'what have we done to my sweet boy?". It was rough. I wish I could say that everything was smooth sailing, but it wasn't. Nothing with Josh is ever easy. He had an irregular heartbeat that was documented. They called cardiology. We had to do about three EKG's and finally they said they 'thought' it was pain related and he would need to follow up post surgery in a couple months. He had his usual nausea and vomiting, which was horrendous with abdominal surgery. I didn't sleep much more than 20-30 min at a time even though we had great nurses. His alarms went off non-stop and we rarely went a half hour without a Nurse or Tech running in to check him.
Thank goodness we had some visitors to distract him! My parents and sister Chantel came down on thursday night to visit Josh. They brought him gifts and a balloon. He got some match box cars, an airplane, helicopter, stickers, coloring book and of course he was in heaven. My sister took this picture of him and it was one of the first time we were able to raise the head of his bed so he was sitting more upright.

This is just a quick shot of his tummy the next day. He was so protective of his stomach he wouldn't even let us look under his gown. It took the iPad to distract him and get this picture.

This is Josh on Friday almost 48 hours post op. He was starting to take some sips of Gatorade and play his iPad more. He felt pretty crappy though.

Friday morning, my mother in law, Shari came to visit. She had just flown back into Utah from a work trip to Oakland. She came and brought Josh this monkey. He loves it... and still laughs when you squeeze it and the monkey noise goes off. It was so nice to get some visitors because they distracted me as well:) And my sister in law Allyson who works at PCMC went with Shari to lunch and they brought me back something for lunch. So nice of them!!!! It was soo good!

This is right before I changed him into his clothes and we were discharged. As soon as I took this picture, he got right back in his bed and layed down. But it was nice to see him get up. He still was not walking or sitting on his own.

This sums up how he felt about going home. He was so overwhelmed and hurting so bad... I hated that we had to drive an hour to get home. 

This is where he spent the next week. I carried him in from his bed at night to the couch and he didn't get off this couch. He was throwing up alot and hurting so much. I am not going to lie... it was very hard emotionally and physically on me. He could not do anything for himself... not even sit up yet. I was a bit overwhelmed. I never imagined I would bring him home and him not being mobile at all. It was so one on one that I basically had to ignore everything else. Even the other kids. Which of course Kaitlyn was thrilled about... 

Then the first few cleanouts with his appendicostomy were not even close to what I expected. He would lay on the Chux pads and be in so much pain that I was almost panicking. The first two nights he basically checked out on us. There is no other way to describe it. My mom had come right when it happened the first night and even though she was calm... I could tell she was extremely nervous. Josh just wasn't responsive. We were slapping his face and literally yelling his name and he was unresponsive. My mom got her little light and checked pupils and they were not responding to light. I think we were very close to either rushing him to the local ER or calling 911. But during this.. he had poop leaking out and his stomach was so distended from previous flushes not resulting in poop. We did a 500ml flush and about 900ml came out. His stomach went so flat it was almost scary. Then he started to respond to us and wake up so my mom stayed and helped me do a dressing change and sponge bath. I was never more grateful for my mom that night. She was a lifesaver. For me and for Josh.
The second night wasn't quite as bad, but he still 'checked out' on us. Then the violent vomiting started and continued all night. Again, I skipped a night of sleep and just sat on the floor by him holding his hand and rubbing his back and wondering again if I was going to make it through this.
I took some pictures of him and I will warn you... they are so heartbreaking to see. But I needed to show the doctor (who of course with our luck was out of town for a week after Josh's surgery) what was going on.

This is the hardest picture to see. He was not responding to me again when I snapped this. I HATED this.

How does that not break your heart?

If you are squeamish don't look to close to this picture. His tube site started to get an infection in it and I think this contributed a great deal to the pain and issues we had going on. We got some meds for it and he started to improve in a couple days.

I got him off the couch and sitting on a beanbag for his flush. He was starting to want to play again and this was so exciting!

He finally got down to play! He was really sore, couldn't bend over and couldn't stand up straight without hunching over slightly, but he was finally moving again!

I did two days of bolus feeds so he could have all the freedom he liked because he wasn't quite ready for his feeding pump backpack yet.

And finally passing the last hurdle so he could begin school. He wore his backpack all day on tuesday the 28th and we went shopping to three stores to make sure he had the stamina to be able to do school. He passed with flying colors!

I had waited for so long to see this sweet smile! He took this picture with my phone all by himself, but it's such a cute smile I had to keep it. 

Josh will have his 4 week post-op visit this next tuesday on sept. 11th. I wish that things were all hunky dory for him, but they aren't. He hasn't adjusted to the flushes like I had thought he would and things are still going rough. He is still vomiting every night after we do his flush. His motility is so stinking crappy that the saline is not moving through very fast and just sits in his intestines putting pressure on his stomach. The only solution I have right now is not a good one. Right now we shut off his feeds an hour and half before we flush. I then use a diaper to drain his g-tube in during his flush and for the 3 hours or so after. Now he only vomits if he gets too much water or something in that time frame and if I do meds too fast. But he has also lost 3 pounds. I called to talk to the surgeon and they told me to call his GI doctor because she is who we need to go to for nutrition, vomiting and weight loss. Until we get a flush routine that works for Josh we are between a rock and a hard place. She wants to go to a GJ tube for awhile. Basically that means that we will bypass his tummy and a tube will go from his G-tube site down to his intestines and feed him directly into those. I told her I wanted to take the weekend to think about it. So we may be making some changes on tuesday that I never thought we would be doing. It all depends on what both his GI doc and colorectal surgeon can come up with.

So that is how Josh is doing in a nutshell. You may be wondering why we did surgery and if it was a mistake. I just want to make it clear that even with all the problems we are having, the flushes do eventually work and we are getting him cleaned out.  That was my only goal with this surgery. He had an xray done a week and a half ago and it was the best looking xray he has ever had. So we are on the right path... it just has a ton of bumps in the road. Hopefully soon we will have a better routine that works for him. In the meantime we will just hope for the best!

Wednesday, August 29, 2012

Jumbled Thoughts

It's 4 am. Really... it is 4 am. I have not been to sleep yet. I can't sleep.

Tomorrow my sweet baby boy starts school. Real school, not preschool. I am nervous and excited and nervous and nervous and nervous. LOL!

This past year has been really hard for Josh and our family. This past 5 months have been the hardest I have ever gone through with Josh.

Tomorrow I will be taking him to school where for the first time in his life, I am trusting someone else to regularly take care of his medical needs. I am a bit scared. I know how much it takes to keep him going day to day.... and the thought of having someone else doing some of this makes me nervous. What if they forget his meds? What if he is having absence seizures and the teacher doesn't notice? What if something happens with his tubes?

The list goes on and on.

I have had some hard conversations with doctors starting this past march. In march we had the 'what does the future hold for Josh' discussion with GI, Dysphagia and Neurology. That was tough. But nothing could prepare me for what happened starting in April when he had a neurological decline. Suddenly I had conversations I NEVER thought I would have. Conversations where the term "Quality of Life" comes up. Conversations where we had to discuss a major surgery to keep his GI system from shutting down completely. Conversations where Doctors were at a loss as to what to do to help my sweet boy.

I would never have guessed even several months ago that we would have to do an appendicostomy. (Heck I had never heard of it before). I never thought we would be doing the last ditch effort to help Josh. It still floors me now that he is only 5 years old and we have already had to do the last ditch effort to help him. He has so many years of life to go and we are already doing the last thing they do when NOTHING else works?

But so far 2 weeks later, it seems like we might have found a good way to improve his quality of life. The flushes are working and when we had to do a emergency x-ray at the local hospital ( I was NOT driving an hour to Primary Children's) his GI tract looked better than it has ever looked. No build up of stool anywhere. So (knock on wood) we might be finally able to breath a sigh of relief.

And it was no easy thing to watch Josh suffer and be in so much pain. It was heart breaking. I got teary eyed (no loud sobs though!) so many times watching him recover. We made the decision to do this surgery and since ultimately it's up to us, not the doctors, I can't help but feel a little guilty that he had to go through that. I know it was needed and we would never have done something so major if it wasn't for the fact that there was alot of confidence in the surgeon and confidence this was the right choice. But it was still the hardest thing to ever watch.

Now as we settle into our new routine of doing nightly flushes that take up to 3 hours from start to finish, and now have 2 tubes in his stomach to take care of nightly...... I have to remind myself that Josh would not be here with us if he didn't have these procedures done. It's as simple as that.

Now wish us luck on our new adventure of school. We might need it.

(PS... I will be doing a post on his surgery and hospital stay as soon as he is settled into school and I have a free minute to sit down.)

Monday, July 23, 2012

Josh's Big News

We have been busy. Really busy. So this might be a long post:)

This past week Josh had his every 3 month appointment with the Dysphasia Clinic (Feeding Clinic). I wasn't expecting any surprises there, and was really looking forward to having a last minute conversation with his GI doctor before our big appointment with the Colorectal Clinic (that we've been waiting for 2 months almost to get into) two days later. I knew her opinion carries alot of weight for us so I wanted to get her thoughts. But first things first. Stats. Josh is 36.7 pounds (13%) and 42 inches tall (26%). His head size is still 47 cm (-3 SD). They were pretty happy about that.. but said he is still a little on the low end of how many grams a day he is gaining. But I am happy with it, so it doesn't stress me when they say that. (mainly the dietician) While there, we went back over Josh's blood work that was done in April and May while he was in the ER and then his hospital stay. His BUN and Creatinine were off while he was in-patient. Those are liver functions. I remember them telling me that and he was supposed to have repeat labs done... and I forgot. What they didn't tell me was that FIVE other levels of his were off. Some of them are basically things that let you know how well nutritionally he was doing, such as his vitamin D is STILL low after a year and a half. So we are adding 1,000IU of that a day. His protein was off a bit so we are decided to repeat all his labs now and then again in 3 weeks. I hate that there are things to stress about. But what else is new with Josh? LOL.

So Dr. O'Gorman told me that after talking to the Colorectal Clinic and giving her opinion, she thought it would be perfectly reasonable to go to our appointment and walk out with surgery scheduled. The Clinic normally has a standard procedure they follow with all new patients and/or patients being referred for appendicostomy's. Dr. O'Gorman knew that Josh wouldn't tolerate large bolus rectal enema's for 2 months. He has had every test under the sun and then some more on top of that. So she told me to go in with a backbone and tell them the same thing she did... Josh cannot wait for 2 months. He needs this done asap for his health and well being.

So you can imagine how stressed I had become about this appointment. I was sooo worried that they were going to tell me they won't talk about surgery until we had done more things, or repeated tests, or something to that effect. I seriously didn't sleep all week. It was soooo stressful.

So appointment day arrives and we had to start with an x-ray. I didn't know about the x-ray, they forgot to tell me. Josh HATES x-rays. I think he associates them with his ER visits. So we had to do that before we even got started (and he had to have blood work done from the orders written on wednesday too) We checked in and got taken back to the exam room. Josh was being a little difficult this time around. He was really anxious and kept asking to go. Dr. Rollins came in pretty quickly and I remembered him from when Josh had his G-tube placed. He was the surgeon who did the colon biopsy's on Josh. I really liked him. So I calmed down and let him begin before I started in with my side of everything. I was shocked when he got right to the point, told me he had talked to Dr. O'Gorman and that Josh wasn't going to need to do anything additional. We were just going to schedule surgery. I was sooo surprised. I was ready to fight! Then he went a step further and let me make alot of the decisions.... such as exactly how they would do the procedure, where I wanted his tube to be placed in his stomach, ect. I had in mind exactly what I wanted, but didn't think in one appointment I could get surgery scheduled, pick the procedure I wanted (there are two ways to do it) and also decide where on his stomach I wanted the tube. Talk about an answer to my prayers! It couldn't have gone better if I had wanted it to! I really liked Dr. Rollins and was so impressed that he was so down to earth and wanted to make sure we got what was best for us. Not all surgeons will do that.

So surgery is scheduled for Augast 15th. He will be admitted on tuesday the 14th for prep. The surgery is about 3 hours long and will be considered laproscopic assisted appendicostomy. The way it is being done makes it so that he can't do the whole thing lapriscopically, but part of it. He will have an incision from his belly button down for a bit and then his tube will come out at belly button height to his right about 3 inches. So he will have two sites that will need to heal and will be sore. But it's all going to be worth it. Dr. Rollins basically told me that after reading his history, talking to his GI doc and all the tests and x-rays we have had done in the last 3 months lets him know that Josh's large intestine/colon is no longer working. We know it has never worked right since he was born, but for some reason when everything went down hill for him neurologically, the bowel issues were hit the hardest. They may bounce back a bit, but he is pretty sure the damage is permanent. So... now we will have a way to keep his system moving along. It will be nice to just hook him up to a bag of fluid that will run through him and clean him out. He can sit and watch TV or play his iPad while doing it. Much better than three people (Me, Scott and Trevor) holding him down to do rectal enema's every night.

So we are excited! Even knowing I have a 5-6 day hospital stay coming up 3 weeks from tomorrow, I am just happy to get the ball rolling and it will all be over with in a couple months.

Now onto some fun pictures!

First of all is Josh at the Feeding Clinic. This kid is obsessed with tongue depressors. While I was chatting with the dietitian and doctor, he kept sneaking another one. Yes... we took that many home with us:)

This is backwards but before we made it to our exam room, Josh wanted to ride in this car in the waiting room so he crawled in there with his feeding pump backpack shoving him forward, and yes... he already had his first tongue depressor from radiology:)

As I have been organizing and re-organizing Josh's Medical Supplies, I broke down and added the two white shelves on each side to make sure I can keep all his stuff together. But sadly enough... we will still have all the new  medical supplies that will come with his appendicostomy. I am not sure how I am going to fit it all there..... nice, huh?

Since April we have had to add doses of meds, change the way we dose his meds, and even add a new med. Before I was able to do all his meds 4 times a day. 8am, 12 noon, 4pm and 8ish pm. I had 4 bins labeled for each time and that is how we did it. Well now I am doing meds more often than that and so it wasn't working to do the 4 bins. So I got this idea from a special needs mom in one of my facebook groups. I give meds at 7:30am, 8:00 am, 12 noon, 2pm, 4pm, 7pm, 10pm and 2 am. So this works like a charm! Bet you never knew a muffin pan would be used for this purpose!

These are his meds that require refrigeration.

And finally some fun pictures! One of the other microcephaly mom's I have met through facebook runs a little foundation called Microcephaly Monkey House. She sends these cute Sock Monkeys' to other micro kids going through a hard time, or having surgery ect. She was so awesome and sent Josh one last week. I took a couple pictures of him. I wish I could get him doing his monkey noise on video. It's darn cute!

And last but not least. After finding out about Josh's seizures while sleeping, we decided to invest in this.... a video monitor. It sure relieves so much stress that anytime I wake up at night I can glance up and see how he is doing. Makes a stressful thing a tiny bit better:)

Thanks for reading all this (if you still are!) and we appreciate all the love and support!