Saturday, July 16, 2016

Your Main Goal - July 13th, 2016

Woo hoo - I am finally at 100%! Finally not sick anymore! I am lucky enough to have an amazing husband and an amazing family to help take care of you. I think that is the reason you didn't get sick. They did everything so that I could stay away and rest to get better.
Yesterday we had to replace your NG tube because you decided that you wanted to pull it out. I hate when we have to replace it, because you SCREAM at the top of your lungs. Not because it hurts, just because it must feel so weird. They told us in the NICU that it tickles as it goes down your throat and into your stomach. Daddy is a pro at putting the tube in. He has had to do it quite a few times now.
I remember the class that we took at the hospital about the NG tube. The instructor told us that we needed to keep changing the nostril that the tube goes in. As daddy tried to put it in your right nostril, he couldn't quite get it. He tried multiple times, and I cringed each time because it looked like it was hurting you. After a few tries, I said to just put it back in the left nostril. This wasn't the first time that we have tried the right nostril. We thought back to the NICU days, and it was always in your left nostril. We aren't sure if that is because they couldn't get it in the right nostril, or they just kept it in the left.
Today we had to get up early and get your feed ready so that we could feed you in the car on the way to your neurosurgery appointment. Of course I didn't leave enough time to do half of the things I wanted to do. I got out of the shower only to realize that I still had to dry my hair and that it was 8:40 and we needed to leave in 5 minutes. I also noticed that daddy left you in your mamaroo and hadn't even changed you or anything. I decided that I wasn't going to dry my hair and I literally started running around trying to get you ready as daddy was in his office working. We got out of the house a little later than we wanted to, and we got to the appointment 5 minutes late. Luckily, they still took us.
We were so excited to see your neurosurgeon. We just loved him in the hospital. He was hilarious, and that definitely helped because the time in the NICU was far from a happy time. They called us back and a lady came in that I thought was the nurse that would take your head circumference and ask us questions. Come to find out, it was a doctor and we were not going to see the doctor that did your surgery like we were supposed to. That was a disappointment. She was nothing like him. She was very informative and said that your shunt is working properly and told us the signs if the shunt were to fail, but she was definitely not the doctor we looked forward to seeing. She said that she wanted to see us back in 3 months. Hopefully in 3 months we will be able to see the neurosurgeon.
We stopped at a drive thru on the way home to get some lunch and then we had to go home to eat and feed you again. We still had time before our next appointment, so I tried getting a lot done that I usually get done between 9 and noon. I wanted to nap, but didn't have the time to do that. I would just have to go to bed early.
Daddy forgot all about your appointment at 5:20, until I said something about it around 4:30. It never fails that he gets on a phone call right as we are supposed to leave for an appointment. It never fails. So, as I was getting you all ready to leave, and as we were supposed to walk out the door, he gets on the phone. I was going to leave and just take you by myself. It just makes me nervous because you like to choke when you are in your car seat, and if I am in the front seat with no one in the back seat, I may not see you choking and that just wouldn't be good. So I got you in your car seat and into the car. I started the car and got in the front seat and adjusted the settings so that I could take you to your appointment. I hate being late. All of a sudden I hear a faint noise, and I got out of the car to just make sure that everything was okay. I got in the back seat and you had projectile vomited all over yourself and the seat in front of you. Ugh. I ran inside quick and told daddy and he came downstairs and I told him he needed to come so I could sit in the back seat. We were going to be late again.
We waited to clean you up until we got to your appointment. We never have to wait which is nice, we always get into the room quickly. We took off your clothes and your diaper so that we could weigh you. You weighed 9 lb, 6 oz. You are a little chunker! I love it! We then put on a diaper and waited for the pediatrician to come in. He checked you out and told us that you were gaining more than you needed to which is great. They want you to gain half an ounce a day. You have no problem doing that! He asked about any concerns that we had and the only "concern" I had was whether it was safe to give you Prilosec at 8:30 pm since we were late with your dose this morning. He said it was fine. I asked daddy if he had any questions, and he did. Usually I have a list and daddy is quiet. It was the opposite this time.
Daddy asked about your tube and told him that we can't get the NG tube up your right nostril. The doctor said that he would try it but he didn't want to bother you even more than we already did. He said that sometimes there is something in the way, or maybe the bone didn't fully grow. He recommended that we see an ENT doctor and said that they would take a look to see what was going on. Another specialist.
The doctor talked to us again about your ultrasound, saying that your veins were growing around the clot. I asked about a piece of the clot breaking off and he said that it was rare. That is what the hospital told us as well. It is still a concern of mine. He said that he would like us to also follow up with hematology, just to see if there is anything that they would want to do. Also, we could come up with a schedule of when to get ultrasounds, since it has been staying the same for a while.
I think your goal is to see how many specialists you can see. You are doing a great job at it! I don't care about it as long as you stay healthy. I will gladly take you to every single appointment if it means keeping you healthy.
I will call tomorrow and make your appointments with the ENT and hematology. Hopefully we can get in sooner than later for the ENT. I am not too worried about hematology since we just had an ultrasound, but I wouldn't want to wait too long.
We love you. We are so blessed to have you as our son. We enjoy every day with you!! There is no where else that I would like to spend my days than at home with you! You are my little love!