Sunday, October 17, 2010

ER and Family Fun

Josiah's brother and sister in law came in this weekend for a wedding. When they arrived, however, we were at CHOP's ER. :o(

Let me catch you up...

Wed morning when the nurse got here she took Dillon's temp and it was 102. Yikes! But we thought maybe he was just warm and we had to get out the door to get to CHOP for his post op appointment for urology and ortho. One the way to CHOP Dillon vomited so many times, he was fighting his brace, he was going crazy! It was non stop the whole way to CHOP. When we got him to the first appointment we saw his stomach was puffed out (and since he was having such a hard time, he didn't get food.) We vented his belly and got a lot of air out of his stomach and he still had a fever. We went to the next appointment and put him on the bench to rest while we waited. I carried him back to the X-ray room, then into the appointment room (let me remind you, Dillon is NOT light!)

While we were waiting I heard the doctor in another room telling a little baby (maybe 9 months old) "It isn't THAT bad!" as he/she was crying while having his/her brace adjusted. Then Dr. Sankar came in and said the brace has to stay on for two more weeks! My heart hit the floor and my blood pressure hit the ceiling. I specifically asked at the last appointment what the chances were that the brace would need to stay on longer. He told me "Almost never. I always take it off after 6 weeks." Well this time he told me, "I always take the cast off after 6 weeks, then put a brace on but since he already has the brace we will just leave it for 2 more weeks." What? Why wasn't that explained to me when I specifically asked? Because he isn't listening to me, he is always in such a rush to get out of the room. I was so excited to let life get back to normal for Dillon, Jay, me, everybody! Jay has been having a hard time the last 6 weeks and I was so excited that everything would start to go back to normal. Well it won't. Anyways, then Dr. Sankar started ripping, and yes I mean ripping, the tegaderm off of Dillon's incisions. I told him to stop and that I would do it at home. He wanted to see them, however. Then I asked him to get adhesive remover and he said "No, tegadrm comes off easily" Well Dillon's heart rate jumped up, he got all tight and mad. Remember now, he is horribly sick and doing bad as it is. Then when he was done ripping it off he started to pull off the steri strips that are on top of the stitches. The nurse suggested he stop and just cut the loose part off so he did that. Then he started to rip the sock off of Dillon's leg that was stuck to him. Again I told him to stop and the nurse told him to let us soak it at home so it won't rip Dillon's skin. After he was done, I looked at Dillon's legs and saw tons of red cuts in it where the tegaderm cut him. The nurses answer "Oh he must have very sensitive skin." I know this! This is why I asked him to use adhesive remover, this is why it is written in his chart to be very careful with adhesives.

I do NOT recommend anyone going to Dr. Sankar. He may be a great surgeon, but he has no bed side manner to be dealing with children. He is in such a rush he doesn't listen to questions and give you honest answers. After my 6 week check up I will start going to another hospital for Ortho.

Dillon has 2 more weeks in the brace - he can come out for a bath but that is it. Then he is allowed to come out of it without even having another X-ray. The biggest fear is if the leg crosses mid line it could dislocate the hips again.

As we left CHOP Dillon was doing as bad as ever. He was horribly sick so we rushed him home and put him on CPAP. He did calm down a bit, but still had his heart rate 140-180 (better than up to 230 like it had been at the hospital). I had given probably 80 drops of oreganol through the day. That evening his fever went to 103. That night we were trying to figure out what was going on with him, we thought he didn't have a bowel movement since Sunday evening since it wasn't recorded anywhere in the nurses' notes. That night, our nurse called off and they couldn't find a replacement. Which I am not sure why because the two nurses I have had since both said they could have done it if they would have been told when I was told (5pm) instead of 9pm or not being told at all. Thursday morning I called the doctor and told him everything that had been going on... you guessed it... he sent us to CHOP's ER. They did an X-ray which showed some back up, but not a blockage of the bowels. The blood work came back clear, and they did a strep test. By this time, Dillon was doing great. Other than the 4 sticks it took to get his blood/IV. They ran some fluid and said it is probably a virus that has to run its course. Josiah came to the hospital with his brother and sister in law and we were all there for several hours.

Since then Dillon has been doing much better. I think it was a virus and the oreganol knocked it out of him much faster. He still isn't handling his food as well as normal, but it is much better than it was. Friday we went to Valley Forge park with everyone except Dillon who stayed home with his nurse. Yesterday Grandpa, Grandma, Daddy, jay, Truett, and I went to Lancaster to see animals, eat ice cream, and buy pumpkins. Since we had a call out we had extra hours to use so again Dillon had to stay with a nurse. I can't wait for this brace to come off so he can do things with us again!

Tuesday, October 12, 2010

Tomorrow! Tomorrow!

Tomorrow! Tomorrow! You're only a day a away! After 6 LONG weeks - Dillon will be getting his brace off tomorrow Oct 13 at 1pm (ish) He has been stuck in this bed for the last 5 weeks, moving only to his right side. Just yesterday we finally put him on his belly for the first time since the surgery... You can see how hard that was!
He was so happy! His heart rate came down, his oxygen levels were great, he slept so comfortably. He has been on medicine to help with the secretions, but he still loves his belly! Tomorrow, Baby tomorrow! He can have baths again, go on his belly, be HELD, go out with us, start therapy, be moved around. I don't know who is more excited him or me!!!

Truett liked to eat his toe, the one with the red light. He would make a funny face at the taste, but then look at the glowing red light and have to go back for another taste! Truett now rolls all over the floor. You leave him on one side of the room and find him someplace else a few minutes later. He is trying to crawl but can't quite move yet.

Postural drainage. You have to get creative! Actually he would slip down in the brace so his G-Tube was be pushed by the stomach strap, so we would do this to "pull" him back out of the brace a little so the tube was in a better place.

I am so bored with my hair. It is so thin after having babies so I was trying to decide what to do with it. I wanted to dye it to a dark brown with hints of red. Well this is what I got....

It was CHERRY RED. OOPS. Well a friend on facebook explained to me that you can't go from light brown to dark brown without going to red first, so actually I did need to do this. So then I added brown on top of it and then got it cut. So this is what I am now....

Still much more red than I had wanted, but at least I don't look like a cherry anymore...well now I just look like a cherry with chocolate syrup on it! hahaha Oh well at least it is hair and hair grows back and dye will eventually wash out! :o)

Saturday, October 02, 2010

Not again!

Dillon's patch to dry up his secretions was done and I couldn't find a doctor to write for more. All the doctors kept saying have the first doctor who wrote for it write again - well that was the PICU doctor and they don't write for anything once you leave the PICU. I don't know why messages weren't being given right but they weren't. We got an appointment scheduled with a Pulm doctor... but for some reason my doctor didn't call my normal pulm doc he called a different one. This new one WANTED Dillon to be full of secretions so he could see how bad he really is. huh? That means we are risking an aspiration so he can see for himself it is bad? Why aren't we seeing his doctor who already knows his baseline?

So our appointment was yesterday, we left 1 hour 15 minutes before the appointment. But due to the flooding and sink holes and accidents on the road it took us 2 hours to get there. We called 2 or 3 times to tell them how late we were and they said to keep coming. Once we finally got there the nurse told me we had to go home and reschedule. I argued with them that we were told to keep coming. She made a phone call and said I don't know who told you that but you have to go home. I kept arguing with them and told them if they didn't see him I would have to take him to the ER (he was coughing SO bad by this time for hours!) The nurse practitioner finally came out and said she was the one we talked to on the phone. I explained Dillon's health issues to her and she went to talk to the doctor. They finally said they would see him, but they didn't know how long we would have to wait. It didn't matter - he needed to be seen.

It wasn't too long of a wait and the doctor was in. He was talking to me about options to dry up his secretions and asked if we are sure we want him "dry and sticky" I said yes I have to for the next two weeks. He said Oh you only want it for 2 weeks, oh then that is no problem I can write for it, that wasn't what I was told. AHHHHHH Why wasn't the message given properly that I am looking for help with his secretions for the 2 weeks we have left in the brace then after that we can position him like we normally do?????

Anyways, the doctor and I decided to put him on the medicine he is allergic to. We are doing a low dose and have upped our limits for oxygen to 4LMP if needed. This medicine we can adjust the dose up or down based on what he needs, the patch he was on is an all or nothing and tends to dry him up too much. The doctor also wrote me a script for this in case we need it.

On the way home and to the pharmacy to get the medicine guess what Dillon did. Aspirated! After coughing the ENTIRE 1.5 hours home he aspirated. He projectile vomited brown stuff from the back seat to the dashboard. He has been sick ever since. He started with a fever, high heart rate, non stop coughing, tight muscles, etc.

The new nurse last night didn't understand when to give more of the medicine so he was coughing all night and so he is having a bad day. His oxygen levels are ok so far on the new medicine so we shall see.

I appreciate all your prayers. I am sorry I have to ask people to pray all the time for us, but it makes a difference and it helps me to hear from people that you are praying. There is such a comfort in knowing that people are lifting our son up to the Lord! Thank you!!