I apologize for the delay in updating on Gavin's condition. Things have been crazy today. He has been released and just arrived home. I'll update on the details tomorrow because I'm just to tired. Basically, this may be the new normal for Gavin. I think we have turned another corner in his continuous decline. He's on a water pill to increase his blood pressure. They released him because he's on the new meds and he's keeping his fluids down. We have a great deal of work and stress ahead of us. Depending on how Gavin does, our entire lives may change. Thank you for all the love and support. I promise to get you all caught up in the morning. **Thanks for reading**        -Lost and Tired Please…

I have only been up about an hour and already things are getting out of control.  Emmett has done nothing but scream. Elliott is wound pretty tight this morning as well. The combination of Elliott and Emmett is akin to gasoline and a lit match. They don't play well together. I'm gonna get Elliott to school and then figure out how to get up to see Gavin. I'm extremely anxious right now because Lizze's phone stopped working yesterday and the hospital phone doesn't allow long distance. All I can do is call the room but they are hopefully sleeping and I don't want to be the one to wake them up. This is so incredibly frustrating and the feeling of helplessness is overwhelming. Thank you all for your continued support. …

I spoke with Lizze about an hour ago and Gavin was having a lot of chest pain. Whether is reflux or actually cardiac remains to be seen. He's on meds for that so it's likely not reflux. He is not able to walk because as soon as he stands up his heart rate shoots up and his blood pressure crashes. At this point,  they can't find anything wrong. He's not sick and it's not medication related. He is pumped full of fluids to the point that his pee comes out as clear as it went in. It would appear as though they have addressed the dehydration and yet it's not changing anything. They are bringing his neurologist in sometime tomorrow. I don't know of he will be released tomorrow but…

I just spoke to Lizze and she says that he may not be released tomorrow.  Apparently,  is isn't even able to sit up. They have added a potassium drip as well as more fluids but nothing is working. They told Lizze that they have no idea what's causing this.  They know he's not sick because all his blood work has come back clean. I hate being trapped at home right now.  I know Lizze is doing a great job but I want to be there as well.  **Thanks for reading**        -Lost and Tired Please join our Autism Help Forum Look for "Autism Help" app at the Google Play Store Posted from WordPress for Android so please forgive any typos as auto-correct and I don't see eye to…

I only have a minute.  Gavin has been admitted to Akron Children's Hospital.  I left to get some things from home.  I didn't make it home because the transmission went out on our brand new van. We are just outside of warranty. I don't know what is going to happen now but I know that we won't have a car for the foreseeable future.  I also don't know what this is going to cost.... All I know is that we just keep getting kicked while we're down.  With all the history we had with the previous van before it was stolen I'm ready to give up. We just can't win for trying. I had to tell Lizze that I wouldn't be able to get back up to them today and…

Gavin's heart rate and bp are out of whack.  Basically,  his BP is crashing and causing him to nearly pass out. Another doctor came in and explained that the combination of Dysautonomia, frequent urination and vomiting is very dangerous.  What they think is happening is that his dehydrating rapidly and causing his blood volume to drop.  This causes his pressure to crash.  The chest pain may actually be related to low blood volume and reflux. That would explain why he has chest pain even though he's on reflux meds. Gavin's heart is directly behind his sternum instead of off to the side. So when he has actual cardiac pain it could appear like reflux. Right now he's one his first 500cc bolus of fluids right now.  Please continue to keep…

We have left the Geneticist and gone straight to the ER.  Gavin almost fell face first off the exam table. It was suggested that we just take him home and let him sleep but that's not going to happen.  Gavin,  literally can't hold himself up and can barely speak. Everything is slurred and or doesn't make sense. Somethings not right and we want to make sure nothing is serious. We can't keep him awake. This is one of those times that as his parents,  we have to do what we feel is right for our child.  Especially with special needs children,  we know our kids better then someone meeting him for the first time. Now we are just waiting..... **Thanks for reading**        -Lost and Tired Please join…

We're at the geneticist at Akron Children's Hospital and Gavin is not doing well.  He is experiencing a great deal of chest pain and is extremely altered. Somethings wrong. At least we are in the right place for by his right now. While we were waiting,  I almost took him to the ER because he was in so much pain. On the way downstairs,  the pain subsided and we decided that we would return to genetics because of how important this appointment is.  We've been to the cardiologist countless times for the chest pain and they always say there's nothing wrong.  I never know if we are making the right decision at the time but there is no instruction book that comes with special needs kids.  All I can do…