The Start of Something Special...: removal for gain

Let me just start this one off with a return to memory lane. 2 years ago I was 10 weeks pregnant and hadn't even seen the doctor yet. The morning sickness was just beginning, but the thoughts on what our first baby would look like and act like weighed heavy on my thoughts. We thought we had everything figured out. We had just moved to Bristol, so we could be close to family. I was going to drive back and forth to school to finish up my nursing degree in August and Luke would be here around September 19th. Never did the idea of a not so regular pregnancy, birth, or life after hit us. Yesterday Jonathin, Luke, and I drove down to Riley for what now seems as our monthly routine I asked Jonathin, "Did you ever think that you would be one of these parents? Did you ever think you would have a Riley kid?" Of course the answer is no. Nothing pointed that things would not be "normal." That Luke would have a difficult beginning. We all planned to be watching our "normal" child running around the house, getting into all the cabinets, chasing the dogs. I even have all the cabinet locks and power plug protectors to prove it. It was on my registry from the very beginning. We planned for a chunky little kid, not a string bean that can't keep some clothes on. If you know me at all, you know I'm a planner and a list maker. I learned from the best in that area. The past 2 years have shown me though that plans can change in a heart beat. There is a reason that we are now the parents of this little prized possession. As much as I get upset, worked up, tired, and just strung out I wouldn't want him any other way. We now have a new normal, and the funny part is it can change everyday.

So going with the idea that we are once again changing our life and what we expect, lets update you on our trip to pulmonary. Usually they are the most routine visits. We have seen Nancy Valentine since Luke was home. She monitored him on turning down his oxygen and since removing it. She also watches to see if he needs inhalers just to get through some rough parts. She has seemed to be the most helpful also. We were first seen by a nutritionist because she wondered about his weight and growth. I can honestly say I feel the most comfortable around her.

On our way to Riley Jonathin was complaining...insert comment here, just kidding. Anyways, he was talking how the trip was pointless this month. Luke hasn't been sick, were not on oxygen, and all she is going to do is listen to him and say see you in 3 months. However, I pointed out that if we don't go and Luke does it get sick it is a pain to get back in to see her and to get medication, so we go. This way we stay in the loop.

There is a routine when you have an appointment at the Riley Outpatient Clinic to see a doctor. They call you back and Luke has to be weighed, measured, and looked at. I don't really enjoy this part particularly. For some reason Luke shrinks when we go to Riley. It doesn't matter which specialty we are there to see, but we;re always smaller. Yesterday was no exception. Luke only weighed 18 and a half pounds and was only 30 inches tall. Just last month he was over 19 pounds and 31 inches tall at our own pediatrician. Who knows? So then we go back to the procedure room and go to the list of questions. Am I the only parent of a special kid that feels like my memory is just a filodex? Has he been admitted since we saw him last? Has he had a fever? How much is he eating? What is he eating? Are his vaccination up to date? What did he eat and wear on January 13th? Okay, Okay that last one is a little far fetched, but you get the idea. I have so much in my head about dates and times and what I do and see I don't know how I have room for school things or even if I pushed the start button on the dishwasher. I at least pride myself on my Luke memories. I have calendars, I have notes, and my mind hasn't let me down yet.

Okay so after we go through the normal round up Nancy comes in. She asks a few more in depth questions and then we get to an unexpected area...tonsils. After looking at the lack of growth...nothing new there, she dives deeper. How does Luke sleep? Well I think he sleeps fabulous. I mean all I see on Facebook are mom's complaining about sleep and how they're so tired and here I have a champion sleeper. Sleeps for 10-12 a night, takes 2 naps a day sometimes lasting 4-6 hours. I just assumed that he was like his dad. Jonathin could sleep in the middle of a firestorm and have no recollection of it. Nancy however informed me that this sleeping habit is not normal. Uh oh, there is that word again. We dive into if Luke is comfortable when he sleeps or if he is restless. Well I usually hear every little peep he makes at night in the monitor so I would say he sleeps peacefully. However, I then think about how much he moves. I mean this kid is in a different position every time you check on him. He also seems to get stuck in the corner of his crib by the morning. Just last week I thought to myself, man how are we gong to keep him in a toddler or even a twin bed when he gets too big?

From here I had a feeling I needed to bring up the big tonsils. In the two times he has been sick this year they have swabbed him for Strep throat because his tonsils are huge. One time they were touching. I have brought up removing them, but since it was Strep no one really said much. However, it worried Nancy. So as she did her own exam she had me look in Luke's throat. Tonsils are supposed to be flat and against your throat if you are not sick...Luke's are the size of marbles and stick out...dun dun dun! So where does this leave us? Well Luke could be restless in his sleep because the tonsils could be obstructing his breathing. He moves around so much to find a good place. He is then tired from not sleeping well at night. If he is not sleeping well it could be affecting his growth!!!! There you have it...another possible answer to the never ending question, Why is Luke not growing and catching up????? This then left me to chuckle to myself and I could see on Jonathin's face he knew what was making me laugh.

For the past year at least my grandma Watson has retold the story about my dad. Apparently when he was little he was a skinny little stick of a kid. Then he got sick and they removed his tonsils and adnoids. She swear that did something for him, because he became the husky kid of the family. So much she had to go buy him husky pants. She has sworn up and down about this for some time. So there you go Grandma, Luke might be husky soon too.

So where do we go from here? Do I get in contact with a ENT specialist at Riley? Oh no my friends, first we have to have a sleep study! Do we all remember how that went last time? SLEEP STUDY if you don't remember please review here. I would have to say it is on my top 5 of the worst nights in the past 2 years and that includes all 98 in the NICU. I have never dreaded something so much as a night locked in a room with lights, beeps, and a crying child hooked up to so much stuff that he looks like he is from a horror movie. Also, that when he is upset and wont stop crying, I can't hold him. It is just me and him in this room. It gets to you so much that you have to leave the room, but then you feel so guilty if he wakes up and you are not there.

So, here Jonathin thought we were going to a pointless trip and we come out with some possible answers where we least expected it. Hopefully everything is as simple as removing his tonsils to get this boy moving.

I also forgot other big news. Luke is eating food again. Slowly we are getting back to a jar of food a day. It's been months since he would eat food. He has so began to eat cookies and other food he can handle. He still struggles, but can usually get it down by himself. His tonsils could also be part of his eating and swallowing problem...