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,