M*I*A-what a weekend!

So sorry guys! If any of you are still out there reading. This is the weekend Nancy came in to see Noah for his dedication. We had BIG plans. We had WONDERFUL plans. We had FUN plans.

Saturday-Nancy arrives

Five minutes before we had to leave Noah violently vomits and front and back of him is covered. It is coming out of everywhere including his g-tube. We called the surgeons, got him cleaned up and started off to the airport. On our way there they called back. We needed to get to the ER and soon. What do we do? Paul was in the van with Noah in front of me and Gram. He said we should pick Nancy up and then go.

Nancy came down the steps from the plane into a hug and I said,"we have to go to the hospital somethings wrong with Noah."

WELCOME TO PA NANCY!

Nancy and I took Noah and then spent the next six hours in the ER at Children's Hospital. They took x rays, then more xrays with contrast, everyone but the dr examined him. Finally we were about to be discharged when the doctor came in and she said wait we need to call surgery and have them come check him out. After that the intern came back and said so you saw surgery..I was like, no we didnt. He then said well its ok I talked to them and you can go. SIX hours in the ER to be discharged and told nothing is wrong with my son.


Sunday- Dedication Day!!

We were all exhausted and kids were cranky from not going to bed until I got home at 1:30am. I almost thought I would fall asleep in church but the preaching is too good. It was beautiful and Noah was a hit in his amazing white outfit from Nancy and his spiked hair. After we came home and entertained wonderful guest for a steeler dedication party. TYSM everyone who got Noah something. He got a ton of great outfits!! He also got some books and cds. He is very grateful and blessed. During the party he vomited again, but the ER said he was fine so we did nothing.(I will post pics and video in a separate blog asap)

Monday- Planned a day at the Children's Museum, have a wonderful dinner and got site seeing

5am- Wake up to massive vomiting from Noah, he is choking. Paul runs to the crib and turns him on his side. When he stops Paul gets him out of bed and lays him on the floor so we can start to get the clothes off. Noah then projectile vomited again, it looked like 5-6 ozs this time. Paul turned him over on his side so he didnt aspirate. We disconnect the extension from the mickey button and it is now coming out of the button as well. When he stops and after we comfort him Paul gives him a sponge bath. HE did it again. I called the hospital and didnt know who to ask for. I called the surgeon on call. Noah vomits again..about 13ozs total I would say. The dr calls Paul back. He is fine, it probably wasnt as much as you thought it was call later to check in with the dept when they open they said. UMMMM??? Seriously? No way. I ran down the hall and woke Nancy something is wrong with Noah.

We get to the hospital at around 7am. Noah was the only patient in the ER. We got right back and right to a room. Doctor after doctor nurse after nurse all asking the same questions. The surgeons came in. The woman walked in looking 10 feet tall a bohemith of a woman. She came in with a muslim and a dorky little white dude. The muslim never spoke but had kind eyes. The woman took a call and left the room and the dork was there. He said maybe the button was broke. The woman came back she was short with me. She said it was a bug but never looked at Noah. A BUG? No way I was not buying that! They took bloodwork and a new xray.


I felt so alone. I felt like screaming. Something is wrong with my son and they all say its a bug a bug a bug. No one will listen to me or even agree or disagree with one another. What is wrong with him? Why wont anyone listen to me? I was so frustrated. On and off the entire day was spent exhausted and in tears.


Hours later the doctor came in and spoke to me. She ask what I thought of the surgeons. As politely as I could I told her I didnt like them. They didnt care and werent listening to me. Something is wrong with my son I know it with everything that is in me. She said she heard them talking and they were "unimpressed" with Noah. They thought I was overreacting and it was just a bloodwork. Bloodwork came back great. This doctor said she had a gut feeling something wasnt right as did her colleague and wanted to admit Noah to figure it out.

Hours later we went to the 8th floor. More doctors, more nurses, more questions more answers(my answers to their questions not the other way around). Noah had an iv and steroid cream for some tissue growing around the tube. He got to have pedilite and I was on them there like flies on poo. I needed a plan. Paul couldnt miss work, Noah couldnt be left alone, my girls needed their mama and Nancy needed to be at the airport. What could I do? I needed a clone. I pushed and pushed and ask about what could be done. A head doctor came in and we talked at length. She was really nice. She finally determined it to be reflux. We got some medication that was not covered and we were allowed to go home.

Why do some doctors think they know it all? Why can't they understand that these are our children and they are our world so we know if something is not right. We may not be as smart as doctors but we know our children and we know our own bodies and we need to be heard. Something is wrong with Noah but someone listened to me and that made all the difference.

On our way home from the hospital I took Nancy up the incline in the burgh. She really liked it and it was so good to be out and to have done something with her that wasnt medical, lol. Now we are all off to bed after we wash the hospital off of us and tomorrow Nancy goes home, hopefully not before we go to the Children's Museum.

I am so exhausted!

Be blessed