At CHOP

Friday night Dillon was resting on his belly, Daddy, JayDonn and Truett were sitting together and sore pregnant Mommy took a bath. After I got out of the bath I went to check on Dillon and he was burning up! The nurse had just arrived for the night so I guessed his fever was about 102 and asked him to check it. Sure enough it was 102! Saturday was not a good day either. I left Dillon on CPAP for most of the day because his heart rate was so high. He kept running fevers too. I was trying to let him body fight whatever it is as long as it stayed below 101. I also held back some of his food for fear he would aspirate it.
Saturday night into Sunday the nurse called me because his secretions were tinged pink. I am pretty sure he had been coughing so hard and we had to suction so much his throat bled a little. He did vomit some for the nurse too. Then about 5:30am the nurse called me again. Dillon heart rate was 180-200, his fever was up to 102 again, and he was coughing like crazy. I held him and tried to calm him down. I stayed home from church while Josiah took the other two boys. Dillon's Tylenol and robinol kicked in and he calmed down.
He was quiet for a couple hours, then it all started again. His fever was back up to 102, coughing non stop, heart rate 180-210, moaning and groaning. I had given 200ml of water slowly by gravity and he did ok with that, but when I gave 60ml of formula over an hour or more he started vomiting. He had not had a bowel movement in 3 days so when he started vomiting up dark dark brown stuff I talked with my mother in law (my own personal nurse consultant!) she suggested we take him in to the ER to make sure there was not a blockage.
A sweet friend from church (the one who watched them for my birthday) has been telling me for almost a year to let her help me with the boys. She has 4 boys herself and can understand how much it is to juggle everyone. So she was the first one I thought to call for the other boys. We took Jay and Truett with an overnight bag to church to meet her there and then headed down to the ER.
We arrived around 5:45p,m and checked in. We told them he was not in respiratory distress and explained what was going on. The receptionist told us to have a seat but the nurse standing there said ummm no we need to move them up, walked over and took us right into triage. While we were still going over everything they already came in to bring him to his room. We went right back and everything started. After getting some history, the resident asked me "Are you a medical person?" I laughed and said "No, I'm a Mom." He replied that I seem to know a lot and that he would gather all the medicine info from me since I know about it and said some parents don't know their child's care that well. (I don't understand that, but that is a soap box I won't get on right now!)

They pulled fluid out of his belly and confirmed it was BLOOD! They didn't know where the blood was coming from but think it could be from the stress of coughing. They said they probably won't look into it more because that would be invasive. They will just watch and make sure it doesn't look like an ulcer or something.
They decided to start and IV and get some blood (of course). Normally Dillon is a very hard stick and even the IV team has had trouble in the past. I prayed with Dillon before they came in and posted it to facebook so others could pray too. The nurse was able to get it on the FIRST stick! It could several minutes for the blood to drip out to get the amount the needed. They got everything the needed and started the IV fluids.
They also deep suctioned to get a culture from his nose, the straight cathed him to get a urine culture, Xrayed his bowels and his chest, and I think that's it! :o) That's enough anyways!

The Xray of his bowels should there was not a blockage, but there is calcification from his constant constipation problems of stuff that never came out.

They told us the Chest X-ray was "very concerning" that his lungs are filled with "stuff" I asked, "by stuff do you mean fluid?" He said the radiologist wasn't sure what it was. It wasn't pneumonia like he had always had and the "stuff" was all in the center of his chest near his heart. They said they were assuming it was a different type of bacterial pneumonia and wanted to hit it with a strong antibiotic then send him to the PICU. Again, I posted to facebook what was going on and asked everyone to pray. Family and friends got their churches praying and their family and friends praying.

Around 1 am we got up to the PICU. Josiah finally went home a little after. The doctor here on the floor then told me that she compared the Xray to a healthy lung Xray from around the time of his surgery last Sept and think it looks very similar to that. She said she does not think it is bacterial and is not going to do an antibiotic. She thinks his lungs just always look that way - everyone's lungs have a different look. And I wouldn't be surprised if his lungs do look different because of his history of pneumonia. So she said if he did well during the night we will talk about when we can go home! She also said the 3rd day (Monday) of a virus is often the worse so he is in the right place in case he has problems. I think he actually had this most of Friday and Saturday and that yesterday was his 3rd day!

Last night they had him on CPAP like he is at home and was able to take off the oxygen with it. He is still on CPAP for now but they should be taking him off soon. They checked his stomach content and there is still blood but not as much and since he hasn't had anything to flush it out with they aren't worried. They started his 9am feed. His heart rate is down to the 115-130 again. He did not have a fever through the night. They will be making rounds on him soon and I will find out more of the plan of action from here.

I spoke with Jay this morning and he is having a great time playing with the people he stayed with. He saw the have a pool and trampoline and sandbox and is just excited. He told Daddy yesterday that he is "happy we are taking Dillon tot he hospital, but he will miss us." He asked Daddy how long he would be staying with them and Daddy told him maybe a couple of days and he was okay with that. He is so mature for four years old. He understood that Dillon needed to go and that he would have more fun going to our friend's house than he would coming here with us. He said he would pray for Dillon. My little boy is much more a little man than I think sometimes. Truett is fine of course since he has his big brother to play with. She is going to keep today, and take them with her to VBS tonight (Jay's first VBS) then we will get them from her tomorrow. Thank you Lord for great friends who are willing to help out in such a way! It is hard for me not to see them, but this is best. It is much more fun for them and much less stressful for me! Thank you Angie!!!

All I can say is Thank you for praying and that prayer works! God hears His people and answers! There is no good explanation for why 1 radiologist, 1 attending doctor, and 1 resident all looked at his Xray and were concerned and then another Doctor looked at it and said he is ok. I believe God is healing my little man thanks to everyone taking him to God in prayer. I think we will get to go home tomorrow if he continues to do well. Please keep praying for him!

Pampered Chef Catalog ONLY party

Hi Everyone!
I went to a Pampered Chef party this week and saw there are quite a few items I would really like to get. I am learning slowly in life that quality really is worth spending a little more! So I decided to have a catalog only party!

If you have been wanting something from Pampered Chef or would like to look through the catalog please go to this site by CLICKING HERE. If you go to "Shop Online" please make sure you see my name on the right side as the Host. Anything you order would go towards my party then!

Thank you so much! Let's face it a lot of people reading my blogs are Moms - busy Mom and are probably like me and would appreciate things that make our life easier. One of the items I really want is the Deep Covered Baker! My friend who had the Pampered Chef party says she puts 3 raw chicken breasts in it with a little olive oil and microwaves it for 5 minutes and the chicken is done and tastes good! you can also bake things in a lot less time with it! Definitely something that would save me time and help when I lose track of time to still get dinner on the table before church!

I hope you can find something that will make cooking even more fun and easy!

Vacation Pictures

Vacation pictures!

Truett with Great Grandma K

Mom has a picture of Josiah just like this.... I guess boys love an open fridge

4 Generations (I'm only in this one to get the baby in there with them!)

Putt Putt with Great Grandma

LET ME OUT!!! I want to come play too! (Truett's face pressed up against the screen door)

Aunty Hannah out on the blow up boat on the morning of Jay's birthday.

Josiah relaxing on the boat

Jay waiting in the window for Grandpa and Grandma S to arrive

waiting....

Truett's big smile (that's because he is so hyper on sugar!) LOL

Jay's cake! I had asked him before what type of cake he wanted and he said cookie cake. Grandma saw a way to make a train cake so we asked which one he wanted.... NEVER ask a question like that! The answer : A cookie train cake! Of course! Why didn't I think of that! So this is what we came up with....

My birthday boy!

I can't believe it was four years ago that he was born. The moment he was born he let out this hardy scream... Josiah and I both started crying and saying "He's crying! He's crying!" Since he was born so fast they literally pulled a doctor in from the hallway to deliver him that we had never met so she knew nothing of our history with Dillon. She was looking at us a little strange when we were so happy to hear him cry!

Truett bragged an apple from the cooler and walked around eating it! It was so cute

Jay feeding the ducks

Grandpa S and Truett
Grandma S, Mommy and Truett - I think we were looking at the ducks here. Truett LOVED watching the ducks swim beside the boat
Grandma S and Dillon
Jay helping Grandpa S drive the boat
Swimming! We decided not to put Dillon in since he had a hard week and it wasn't worth upsetting him. Jay was scared to death. Truett was a little scared but would calm down and enjoy it a little. Grandpa K got in for a few seconds and that was enough for him. Grandma K is scared of water and didn't go in, but the rest of us enjoyed swimming!
Dillon with my sunglasses on

Mommy and Truett

I don't know why this is flipped, but if you look right in the middle you can see the bald eagle! It was so cool to see a bald eagle in the wild!
Dillon loved the boat ride, his stats were the best that they were the whole vacation while we were driving around and he could feel the breeze and the vibration! Truett and Dillon enjoyed a nap!
I think this one is Josiah out on the inter tube
Me
My Mom
My Dad

Dillon's first days of School

Dillon's first day!

Sitting with all his supplies waiting for the bus to come. This is what he has to have with him every day. This does not include the nurse's stuff and her lunch bag!

Our little boy is growing up!!!

Don't let the smiles fool you, we were both sad to see him get on the bus!

The big boy!

Here's the bus!

Being strapped in, just like in our van

They're taking my baby away!!!!!!!!!!!!

He actually did very well on his first day. He could do his stander or get his PT or OT because of paperwork not being done on time, but he didn't get upset of have seizures or anything. The night before he left I kept whispering to him that if he did horrible he would get to stay home with me.... I don't think he wants to!

Jay was sad that he didn't get to see Dillon get on the bus since he was still sleeping so he asked me to wake him up from his nap so he could see Dillon get off the bus. I told him he would have to go to bed early if he wanted me to do that. Normally he goes to sleep around 2 and Dillon was due to be home around 3:30. So right after lunch, about 12:30, he willingly went to bed. We waited outside for the bus to come....

While we waited he kissed the baby - I don't know why I look HUGE in this picture, I'm really not THAT big!!
Jay was so happy to see Dillon come home!


Dillon's second day went well too. He was cooing during circle time and during the tactile time. His nurse is so sweet and sends me one or two messages during the day to let me know how he is doing so I won't worry. Maybe he has an independent streak in him like my other two and likes to finally do something on his own! I don't know but so far he seems to enjoy it. It will be interesting to see if he likes it once his therapies start and they make him "work!" He won't be able to go on Tuesday because he has a neurology appointment that has been scheduled for about 8 months!

Thank you everyone for praying for me. It wasn't as hard as I thought it would be so I know people were praying for me! I had a peace that I didn't think I would have. It was weird without him but I was okay. I am dealing with mixed feelings about it. I enjoyed having the time to talk more with Jay (normally I talk a lot with the nurse so he got my full attention) but I feel bad about liking the time without him. I know Jay feels the same confusion as I do from things he has said. Even though he hasn't voiced it in this way I can tell he is feeling it. The second day he was excited to get Dillon off the bus again because, as he said, "I love Dillon!"

4th of July!

Happy 4th of July (ok I'm late but these are our pictures!)

I already updated with what we did so these are the pictures....

Truett's first time seeing fireworks... He wasn't scared at all - he loved them!

He would blink every time they made the loud BANG but he wasn't upset he was laughing!

Dillon stayed in the car seat in the truck but with his window down and facing the fireworks. He slept through it all!