Thursday, August 30, 2012

What we have been up to...

Life happens, fast!

One day I noticed Haddie's finger looked a little swollen, I thought it was one she sucks so I dismissed any further thought. A few days later I looked at it again and realized that it is not a finger she sucks, it was the pointer and she sucks the middle two. So I asked a nurse what she thought and she said she thought I should call the doctor. The next day I got her in and they sent her across the street for X-rays. When the X-ray tech handed me copies of the films and said if you don't hear from your doctor within the next two hours I would call them... I knew it wasn't good. I got home and looked at the X-ray on my computer and did not need a radiologist to tell me it was broken. So as soon as I got the "offical" call I called DuPont Children's hospital. They got her an appointment for two hours later. Josiah came home from work to be with the other kids and Haddie and I went. They park your car for free (which I love!) and we were in, casted and back to the car within 45 minutes.

By the way - my best guess was that when she pulled my iPad down and it hit her head a few days before that it landed on her finger. It wasn't broken in a place where she fell they said something happened. That is my best guess. But she only cried for about 2 minutes

The next day she climbed up the steps for the first time so it didn't slow her down at all!

A few days later we were getting ready to go see family and our night nurse was going with us...until he was in an accident the day we were supposed to leave. Thankfully he was not seriously injured, but unable to go with us. We had a good time seeing many family members.

After coming home Haddie got her cast off, I kind of miss hearing the thud thud of where she was! Dillon was scheduled for a surgical procedure on Tuesday, and well.. it didn't go how I thought it would! He was supposed to get a scope down his throat, biopsy, and an impedience probe placed by GI and then ENT was supposed to look at his ears and possibly place ear tubes. The GI doc (different from my normal one) walked in and asked me if they drugged him because he looked so tired. I said no this is baseline for Dillon. Didn't he read the chart, or talk to my doc enough to know that Dillon is low function?? The ENT doc called out to me in the waiting room and told me if you think of your ear drum as a trampoline, Dillon's was almost flat from the amount of fluid on them so it was good we placed the tubes! then GI came out and told me that they put the scope down and got the biopsy done, but they couldn't get the impedence probe down . This was supposed to stay in him for 24 hours and measure reflux, both acidic and nonacidic to see if he is refluxing formula and/or secretions. The doc then tells me that it is like a piece of wet spaegetti and it was curling because of Dillon's narrow, floppy, obstructed airway! (No joke!) He said we would need IR (radiology) to place it and that it will only take 5 minutes but that we would have to reschedule. I asked him can't they get someone to do it while he is under? They said sorry he is already awake, you will have to reschedule this. By this time I am just shaking my head in amazement. This is CHOP the world's best children's hospital and no one thought ahead enough to know that they might need help to place this flimsy tube in a child like Dillon? And no one can get IR in there for 5 minutes to help out so a medically fragile child doesn't have to go back under another time?

Then in the PACU the nurse put the side of the bed down and caught Dillon's hand - with the IV - under it and hurt him pretty bad. Then, even though he was awake and oxygen and heart rate were good, his body temp was dropping. It went to 95.3 I think. They had to put a warming blanket on him to get it up after a good hour. Thankfully a teenage girl from church was with the the WHOLE time to help with the kids and was such a blessing! I couldn't have done it without her!

My mom kept reminding me that so many people were praying for Dillon and that God must have stepped in and stopped the probe for some reason. The next day Dillon vomited twice. I can count how many times he has vomited since January, and he did it twice in one day! That would have thrown off our probe study horribly! They would have thrown him on drugs and or a J tube for sure, and that isn't even normal for him! Praise the Lord for his intervention even though I couldn't see it at first!!! Next time I know to tell them that he might have those reactions after being under so we will be prepared for them.

The next day we also found a bloody spot on Dillon's scalp.....??? The nurse and I were trying to figure out what they could have done to him in the OR, dropped something on him? His nurse washed his hair really good the night before and didn't find that so it had to have happened in the OR. My mom suggested, and I think she is right, that they tried to place an IV in his head. Since he had at least 5 other marks from attempts I think that is what happened. You would think they would have told me that, though.

I decided to change to DuPont and try their GI, I have nothing but bad experience after bad experience with CHOP's GI so we will try DuPont. I called for a new patient appointment and got in for 2 weeks from now... that is awesome!

So that is a quick run down of what we have been up to. There is little time for blogging with 4 kiddies. I spent literally 4 hours on the phone today for Dillon about different things including trying to find someone willing to fit him for contacts so that he can actually try to use his vision. Wouldn't that be great?!?!

His seizures have also been 10X better yesterday and today. I wonder if the fluid in the ears was causing pain and bringing on worse seizures....? Time will tell....

Thank you to everyone who prayed specifically for the procedure, and to everyone who just remembers to pray in general for us. God hears, and never ceases to amaze me at how He answers our prayers. Even when we don't realize it is an answer to prayer He still cares and helps us!

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