peg tube

Thursday March  2013

Aaron's surgery only lasted 30 mins but it was the longest 30 mins ever. Dr S said it went great and he did end up doing a biopsy to check for reflux. He might end up having the Nissen if it shows chronic reflux. He was taken to the PICU and we were able to see him right away. The anesthesiologist said he did well and only had a issue with a very low heart rate. She gave him some meds to increase it and he was fine. He looks so peaceful sleeping and I am praying for no pain. He has Morphine ordered if he needs it, but I am hoping that he will sleep for a while. I can't wait to hold him again.  I am so thankful that there were not any complications and hopeful that this surgery will help keep him healthy. He has been through so much and I want him to start feeling better.

                                                           sweet angel

I am hoping that this heals quickly and we are able to get a button in a few weeks.

The site has to be cleaned twice a day and the tube turned once a day. I am hoping that this is not going to cause him any discomfort. Praying that the next 4 weeks go fast and we don't have any problems.

Right before we were discharged (friday) Dr Y was checking on Aaron. He was telling the nurse how he had taken care of Aaron the last 2 weeks in the PICU. I know how sick Aaron was, but hearing it from the Intensivist made it all more real. He was telling her how sick Aaron was in the PICU. That he had done a Bronchoscope and it took him a very long time to get better. I am so thankful for this amzing team of Drs taking care of my little angel.

surgery day

Thursday March

Aaron had to be at the hospital at 3pm today. He was so good in the waiting room. He loved all of the different sounds. His favorites were the doors opening and closing and the footsteps of the women in heels. He was laughing so hard.

My stomach turned as soon as they called us back to pre op. By this time he had fallen asleep and was sleeping in my arms. I hated putting him down on the bed. He woke up as soon as his head hit the pillow. Thankfully he was in a good mood.

He was awake for a few minutes then he drifted off to sleep again. I talked with Dr S and the anesthesiologist. We talked about what had happened before and some of his medical history. She said she was ready for him and would treat whatever problems he had. I made sure that he was given his first dose of Solu Cortef and that the second dose was ready on the floor. Once we had everything ready I got to hold him again. I cried when they took him from me, thankfully he was sleeping and never realized he was taken away. I can't wait for this to be over.

Follow up with Dr C

Wednesday March 27, 2013

Aaron had his follow up appointment with Dr C today. He said he looked very good. His temp and heart rate were good and his lungs were clear. We talked about his surgery and his meds. He wants to see him in a few weeks but I am to call if if something changes. I am so thankful for the amazing Drs that I gave taking care of Aaron. It makes all of this a little easier knowing that they are taking such good care of this little boy.

Surgery consult

Tuesday March  2013

Aaron saw Dr S today to discuss his upcoming sugery. He will be putting in a peg tuble that will stay in place for a few weeks. After about 4 weeks we will decide on the type of button to replace the peg tube. I am thinkibng about the Mic Key button becuase that is what Tae has, but they said there are some different ones that they are thinking of for Aaron. Aaron slept through most of the appointment. Once they put us in the exam room where it was quiet he fell right to sleep. He is so sweet..

I am very nervous about Aaron having surgery. He did not tolerate the anesthesia well the last time. I know with all of the input form all of his Drs they are taking all of the necessary precautions. I dread the moment they take him out of my arms.

the school

Wednesday March 27, 2013

I got a call this morning from Aaron's school. He has not been a  school for a long time. His Dr sent a note stating that he will be out of school until we get his seizures under control. Besides that I am not comfortable with the school nurse at all. She has taken very little interest in Aaron and was worried about the diabetic kids snacks during his medical review. Really?? I am trying to tell you the signs of his crisis and explain his seizures and you are looking at  your phone?!? She also never attempted to see Aaron while at school to get some sort of baseline on his health. Anyways. The teacher calls (she has never seen Aaron) and tells me that she needs to update his IEP and I need to come to the school today and sign the papers. I  tell her that Aaron has just gotten out of the PICU after 11 days and that he is having surgery today. She tells me it will be real quick if I can just come to the school. I tell her that he has a NG Tube and IV pole and that he is having surgery, She says "Well I am not trying to be rude or pushy but I can bring the papers to your car" Are you serious. My child is sick and getting ready to go into surgery and all you can think about are some papers. I let her know that I was not coming to the school today. She did not seem very happy but she didn't really have a choice. My kids come before some paperwork. I am very disappointed with the school system. It seems like paperwork takes priority over the welfare of these special little kids.

Surgery date and meds

Monday March 25, 2013

 I was able to get all of his appointments made. I talked with Dr S's office and the earliest they could schedule us was April 3rd!! I begged and pleaded to get us in sooner and explained a little about Aaron. The nurse is going to talk to Dr S and Aaron's other drs to see if they can just add him to the schedule this wee. I hope they can!!

I had to get a  prescription filled for Vimpat (seizure med) and that was a nightmare. I went to our regular pharmacy where I was told I had a n illegal script. The pharmacist was rude. I was trying to explain to her that he had just been released from he PICU and he needed his morning dose of this med. She said she couldn't help me. I asked if she could call the hospital or his neuro and get it straightened out. She finally agreed. After she got it straightened out she informed me that they did not have enough in stock and that I would need to go to a different location to get it filled. She called the other pharmacy and made sure that they had enough in stock and she was told they did. I went to the other location and the girl at the window said "i don;t know what you are talking about I didn't talk to anyone on the phone" as she chomped on her gum and rolled her eyes.  told her that the pharmacist had just talked to someone here in the last 5 minutes and she said "I told you i didn't talk to anyone on the phone" I started getting hot I was so mad. I asked her how many people were working and she shrugged her shoulders and said "2" I told her to go and ask the other person. Really?? You are in charge of counting pills and filling meds but you couldn't figure that one out? Makes me a little nervous to get my meds filled here. So the other one says "Yeah I talked to her" and she pulled him up on the computer. She walks overt to the shelf comes back and says "We don't have enough to fill your order" I ask her if she can just give me enough to get through the day and order some more,. She laughs and says "NO" By this time I am beyond frustrated with these two little girls. I can't believe that they fill prescriptions. I ask her why she told them she had enough and she just shrugs. She tells me the 4 other locations and says I can try one of them. Let me get this straight. I am just supposed to drive around town to the other locations hoping that they have this med n stock?? I ask her if she will call and she tells me she can't. I am about to have a meltdown. I don't ask her I TELL her that she is going to call the other location and ask. She told them she had it I am here and now she is saying she doesn't. She is going to help me out. Finally she calls after repeatedly telling me that she is not supposed to call other locations. WHATEVER. She find some at the other location and I go there too pick it up. Finally I have his meds 2 hours later. I get home to find out that they are going to add Aaron to the list on Thursday.!!YIPPEE!!

Home

Sunday March 24, 2013

We are home!! It has been a long 11 days and I am so happy to be home.

 

 

I can't wait to get rid of this NG Tube. I am sure that it is so uncomfortable for him. I am thankful that he is still a little lethargic so he doesn't really know its there.

                                                 LOVE this crazy sleeper