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Thursday, October 29, 2009

Update on Aidan - We're home

So what happened?

Well, some of this may be a repeat, but follow along.

Saturday morning around 4am Aidan crawled into bed with me, this isn't all that abnormal as none of us sleep as well with Darren not here. Roughly an hour later Aidan turned over looked at me and informed me he was going to be sick, so in my sleepy stupor I picked him up and carried him to the bathroom, where he spent the next 30 minutes hugging the toilet.

After that I laid blankets on the floor right next to the bathroom for him, and from then on he would make a trip to the bathroom to vomit about once an hour. He is VERY used to being told to drink fluids, as that is a very important part of keeping him healthy and flushing unwanted sugar from his body and he does very well when told to drink. Saturday was no exception, after doing calculations at the end of the day he took in over 1/2 a gallon of fluids. Unfortunately as soon as he'd put anything in his belly it would come right back up.

One of the hardest parts of dealing with a child with diabetes is trying to determine if a sickness is just a sickness, or if a sickness is due to the disease. Generally if Aidan has a consistently high blood sugar or if he gets mulitple ketone readings showing moderate to large ketones in his urine, we know something is up and it's related to the disease. Saturday was different though, he maintained blood sugars in the 200 range, which is somewhat elevated, but that is typical for a diabetic who is "ill". In addition he had 0-trace ketones so I wasn't overly concerned. But as the day wore on and he just laid in the hallway he began to look worse and worse, so we called the hospital where his endocrinologist is based in Charleston and spoke with the oncall Dr. there. It was his recommendation that if Aidan wasn't able to eat and keep something down in the next 2 hours to take him to the ER, or if we thought he was getting worse to just trust our gut and get him to the hospital.

Probably 30 minutes after that call Aidan spent a very violent 20 minutes in the bathroom with dry heaves... poor baby had nothing left to throw up, and in the midst of all of this he had started screaming OW OW, complaining of "something poking him hard" in his tummy.

So Darren packed Aidan up with a trash can and took him to the Emery Care facility, who then transported him to the ER via Ambulance. Once admitted to the ER he was put into the Pediatric Intensive Care Unit and remained there for 2 days.

Little trooper, the nurse would wake him up every hour to check his vitals and blood sugar, but she also had to ensure he was FULLY awake so she could ask him questions and get him to respond. This is because when CO2 levels drop significantly it can affect stuff with your brain (can't remember the technical term). I think this was taken right after the 4am round of questions.

Sunday morning talking to Bubba and Daddy on the phone.

Painting an Alligator in the PICU... feeling better.

Darren and Asher Sunday afternoon at the JDRF Walk for the Cure.

So what the heck??? Well, apparently Aidan's pod had a kink in it. Now this is INCREDIBLY frustrating as it's supposed to alarm if something like this happens, and when I say it was kinked, it was KINKED. The cannula (tubing) looked like a straw that a kid has chewed on. However, the way that the pod is made you can't really see whether the tube is kinked (even though there is a view window) all you can see is if the tube has an occlusion or if the area is turning red. However when we removed his pod at the hospital, we, to our horror discovered that this was likely the culprit. So what happened was, Aidan wasn't receiving any insulin, his body could compensate for a little while, which is why his sugars weren't through the roof, but it affected his body in other ways (the vomiting). His moderately elevated sugar levels, trace-moderate ketones in addition to the consistant vomiting lead to the reduction in Aidan's CO2 levels. When CO2 drops it is called diabetic ketoacidosis. The blood becomes very acidic and side effects can cause a lot of permanent damage, in the worst cases it can/is fatal.

Normal CO2 levels are 22-26, when Aidan was admitted he was a 7-8. Anything below a 6 is considered SEVERE, so he was pretty close. Because of his low level we were told to expect him to stay in the PICU for probably at least 3 days. That posed a problem as Darren is in the middle of the outage and is working 12 hour days, 6 days a week and Asher was not allowed in the PICU. So it was either let Aidan spend the days alone in the hospital or ask Yaya if she could come out to keep Asher. Of course Yaya got on a plane early Sunday morning.

However, by Sunday lunchtime Aidan's CO2 levels were already back to normal, with a reading of 23. PRAISE THE LORD! And they said they expected us to be moved to the regular floor by the end of the day. His nurse told me that in all of her 14 years at the hospital she's 1. Never seen a child more "in the know" about their diabetes 2. Never had a more bright, friendly and polite patient and 3. rarely ever seen CO2 levels recover as quickly as Aidan's did, especially in someone so young. All of which was really encouraging to hear.

They did move Aidan to the "regular" floor right after dinner on Sunday. There was some MAJOR issues with the nurses on that floor, but I won't get into that... let's just say it wasn't good and our stay Sunday night was pointless. Aidan's pediatrician stopped by the hospital Monday morning and asked how everything was going... after I figured out who this man was, why he looked familiar and acted like I knew him, he asked how things were going, so I told him some of the problems we had had the night before... he was just as baffled by some of the things that had gone on, like why they used A GINORMOUS needle and shoved it into Aidan's stomach rather then the cathiter in his arm, or why on earth they would dilute insulin with saline... He said he would "take over" and personally call Aidan's endocrinologist in Charleston to get a plan in place for us, and as soon as he had that he would insist that Aidan's discharge papers be written as there was no need for us to still be at the hospital.

YAY! Out of the PICU, CO2 levels restored and feeling more like himself. Aidan and I had lots of fun watching a Cake Boss marathon on the hospital television.

Not 30 minutes after he left, I had the Pharmacist, Nurse Manager and Chief Nurse in the room apologizing for the previous nights events... Interesting. Then the resident Dr. came by to let me know that Dr. T (Aidan's pediatrician) would be handling everything. Once Mr. resident man left the room, the phone rang and it was Dr. T, he was calling to let me know he had spoken with Dr. B (endocrin) and gave me the game plan and said I should have discharge papers within an hour.

Well, alrighty then. So... we were home before dinner on Monday. The last few days we've kept it pretty low key, we still had some issues with high blood sugars and ketones Monday-Wednesday. But after staying in daily contact with his endocrinologist, Dr. B and changing his basal (constant) rate of insulin he had a near perfect DAY today, with only one high. THIS IS A HUGE improvement!

Yaya is here through early Saturday morning, the boys are really enjoying having her around and tomorrow we are taking her to our favorite pizza place, the Mellow Mushroom, and then maybe walk around downtown for awhile.

Enjoying time with Yaya.

We have been so blessed and encouraged by everyone's thoughts, prayers and words of encouragement this last week. Thanks so much! Sorry it took so long to get an update written and posted, but as you can imagine we're still recovering and trying to get things regulated here.
Just know we love and appreciate you!

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