July 12 - 14

What a day! We decided yesterday that the G-tube would be a good option for us. Since Andre has not been able to be here, he is leaving it up to me since I am in the know. It is so much pressure. 

Everett ate well yesterday, but I still am nervous we are going to get into trouble once we get home if he doesn't have a back up tube. We committed to the surgery and all of his Iv prep materials came in last evening. He knew he had to eat before midnight, and we had a little peptalk so he knew he had to eat big. He drank 180 mL in about 40 minutes, which is about 6 ounces. I feel like that was him telling me, "Mommy look I can do it!" I didn't listen. :(

The IV process was torturous. I could tell my nurse last night (Sunday) was new, and I know that they had a hard time getting lines and him before. I told her it was no offense to her, but I wanted someone who had a lot of experience, thankfully she was understanding. The first attempt was unsuccessful. She finally got it in him and then it blew. She was called to go to an emergency situation. So the charge nurse took over. They wanted to put it in his head. I know it is a safe place since they move their wrists so much, but I couldn't bare it. She found a decent spot in his other arm and it was successful. However I cannot even begin to describe the torture of watching him go through two IVs. It made me think back to all of the times he was poked before this, but I wasn't at his bedside comforting him. It horrifies me. 

He was all tuckered out from screaming, he fell right asleep. I stayed the night assuming he would wake up hungry and I would need to soothe him. He slept through the night and we had to wake him up in the morning at 7:30. Unfortunately his IV monitor went off every 15 minutes all night long so I did not sleep a wink. I don't think I would have anyway, knowing what was to come.

My nurse started to wheel him out of the room around eight the next morning and I asked her to stop. I have no idea why. Something inside me just did not feel right. I was trying to be levelheaded. I knew I was on no sleep, for however many nights in a row at this point. I did not want to make a decision when I felt like I was an emotional wreck. However I don't think I will not be an emotional wreck while he's in here. The surgeon, nurse practitioner, and nurse all sat down with me. They were very nice about it all and asked me a lot of questions about how I felt about both scenarios. I told them I didn't think he had a fair chance, with all of the testing he had over the weekend, he had been eating decently well in the interim. Everyone had a different opinion. Some doctors said since he was on that fine line, they would get it no questions. Others felt he could do it, with a little more time. I truly wanted to be told what to do. All of this time in here, I have wanted to make decisions for my baby and half of hard for what I think he needs. I did not want to make this call, this one time, I wanted someone to tell me what to do. I wanted to know the right answer. I was 50-50. We decided to put the surgery off until Wednesday, to give him more time to tell me what he could do. Again, hopefully Everett would tell me.

They took his IV out, he had already had a dose of an anabiotic too. I feel terrible that I put him through that IV process the night before. I should have just called it then. So now he has the last 12 hours of exhaustion and a very hungry belly against him. Surprisingly, he wasn't overly hungry and did not eat much right away. He did make up for it throughout the day.

Over the last 24 hours, he has been doing great. I still worry about taking him home. However, I think I would rather take him home and give him that chance, in a normal environment, and come back for a G-tube if he needs it. I worry about having to take care of his needs at home when I have my darling Clara needing my attention too. I hope I can pull it all off, and get them both what they need.

We are starting the discharge checklist. It makes me so nervous to even start them since I won't know for sure if he will go home until he proves himself again today and through the night. The doctor will need to approve it during rounds tomorrow. However, I do not want to have to stay after he is released to do the  CPR class, car seat challenge, and pediatrician appointment. I made the pediatrician appointment for Friday at 3:15, he is doing his car seat challenge right now. He has to sit in it for 90 minutes without having any type of episode. He hasn't had one in quite some time, so I'm hoping he does not throw us any surprises. We do know Everett likes to keep things interesting. The CPR class is today at 3:30, I will get that out-of-the-way then. So technically, if the stars are all aligned, we could be leaving tomorrow. He needs to gain weight, so let's hope he gains some today! That is a biggie! It is so hard to let my brain think it's possible, I do not want to be letdown. We will see how the rest of the day goes. I have tentatively canceled his procedure, with the understanding that if he does not get sent home tomorrow there is a great chance we still may need it. 

Rumor is spreading that this handsome devil might get out of here, everyone here is so happy for us.  Everett is loved by everyone who comes in contact with him. We have been here so long it feels like I have known these people forever. We are all talking in a secret language, that we all understand, no one wants to jinx anything. Keep up the good work Everett, we might be home free before we know it.