Re: Ian STILL out until further notice :(

Still working in the gut but what a happier guy after the shunt surgery yesterday 😊 Thanks so much for all of the amazing energy, prayers and love sent our way! 💕

His colon and intestines have to be cleared out before we can go home. The first strategy doesn't seem to be working so if nothing before 10 tonight he will get an NG tube with liquid Mirlax and be on a clear liquid diet until it's all out. 

Just a heads up that when we do come home, it will be 2 weeks before he can go back to school and all therapies. 

We miss you all! 

On Mon, Apr 16, 2018 at 4:58 AM Shari Abercrombie <me@shariabercrombie.com> wrote:

Ian is still having a lot of issues and we will see more specialists tomorrow. Had a X-ray of

His stomach and was full of stool. We've been working on that. But there are other issues now  on top of the pain and challenges he's having from the GI perspective. There is strange eye things going on now and possible seizures :( 

I really think we need to take the next step of admitting him to CHLA tomorrow to do more studies. We will see what his docs say later this morning. But, as with last week, just wanted to let you all know.

Thank you so much for sending love and positive energy. I'll keep you updated as I know more. 

On Tue, Apr 10, 2018 at 10:56 AM Shari Abercrombie <me@shariabercrombie.com> wrote:

Hi fabulous supporters of Ian,

We have had a very strange week with Ian. He has something going on with his stomach but we are unable to figure it out. He keeps saying his tummy is sick and sad. He's hardly eating, not having bowel movements and generally lethargic. This has been going on since April 2nd. 

When he gets a device, which we all know is his weakness, he will usually temporarily perk up, as he did in the ER at CHLA on Saturday afternoon. But even with that temporarily perking up, he eventually comes to a time where he can no longer stand up, has to lay down and his forehead temporarily gets very hot to the touch. I have not been able to record  this transition. Although Mike has witnessed it a few times. Afterwards he is curled up and completely out of it. And after that he's basically flat out and doesn't get up for some time. 

He's also been falling a sleep much earlier than usually, between 5:30-7:30 each night. And typically has sleeping much later than usual. 

I've been testing his blood sugars and they haven't been bad. For the last few days he's let me feed him yogurt once or twice a day. I've been giving him Lizness or Mirlax daily to no avail. Since the 2nd he's had one BM naturally in the middle of the night on the 5th. Although I had given him a glycerine suppository and the Lizness earlier that evening so he definitely had help. 

This past Sunday I used an enima to help him pass some stuff. I was hoping that would help but it doesn't seem to have. I'm giving him as much probiotics as I can but not much because his Lasca of appetite.  I did have him drink prune juice at the start of all of this, which didn't help. He only really wants to eat grapes and carrots, when he wants to eat. He's also had a couple banana waffles last week and  ate one handful of Cheerios last night. I also got him to drink 3/4 or a banana/strawberry/kale smoothie Sunday.  Luckily I'm able to get him to drink some water although we won't drink as much as he usually does. 

His stomach is not distended, or hard, nor is it sensitive when pushed on. His temp seems to be on the colder side, except when he's having the flush moment. Not sure why. In general when he sleeps he pushes all the blankets and pillows off the bed and prefers to sleep just on the sheet with nothing over him. 

One other thing I noticed is that his hair seems to be falling out more than usual. Not sure how this could be connected, or if it's coincidence. 

I've been literally going crazy over this. Mike and I have been searching the web with his symptoms to no avail. He regular pediatrician was out last week so we were able to see her yesterday. She ordered blood work which we are waiting for the results. Should be back any minute.

 I should have insisted the ER do blood work as well as an ultrasound of his gut. But I was so frustrated when he perked right up with a device I gave him so they could do his vitals. I also should have insisted the Attending come in to see us, rather than just the freakin' resident. "Mom, have you heard of Mirlax," was her fabulous suggestion. I was not my strong and determined self that night. I've not been sleeping and have been so stressed about this whole thing. 

We were able to see Dr. Gill, his amazing Osteopath, this morning. She feels his colon was blocked up as well as much of the rest of him. I'm sure he's bound to have a lot of bodily  response to this past week. 

At this point all we can do it wait and continue the search. Dr. Gill suggested we get a urine sample. Which I will try to do today. 

After the blood test results I'm hoping we can move to a stomach ultrasound to explore his "sick and sad tummy". 

I will keep you all abreast of any new info as I receive it. Until then please cancel all of his appointments until further notice. 

Thanks for your support and love,

Shari