The Feeding Tube and Cara Carrera

My parents had the "opportunity" to take the Nasogastric intubation (NG) class today. That's the training session for my feeding tube should I need to come home with it. They passed the test on how to remove and install the tube so I guess I should be relieved. We are hoping that I can take all of my food through a bottle but it isn't looking so good. They just give me too much and I get the fat happy sleeps in the middle of my eating. Then I fall asleep naturally and I get the rest of  my food through the tube.

I've been taken off of my oxygen completely twice now but I can't sustain it by myself. They put me back on it for a half day and try again. I can go home with a feeding tube but I can not go home on oxygen. That's the one question mark for now- when will I be able to breathe on my own? Please keep me in your prayers. I'd like to get outta here soon.

Enough about me. Let me tell you about my sister Cara. Her full name is Carrera, like the Porsche sports car. My dad can say he has an '02 Carrera and not be lying about it. Maybe one day he'll have a real one. Cara paints her nails on a daily basis. She has 85 different colors to choose from, seriously. She is a huge helper at home. The kind that just does it without being asked. She has changed three times more diapers than my dad has. I'm sure that she will be wiping my tushy too. Cara can be very sensitive. She was very upset when we weren't sure how I was going to do in the long term. She gets sassy with my mom way too often and she has a soft spot in my dad's heart. All girls have that spot with their dads. Just ask one. She is a very responsible girl. She has taken baby sitting classes and my parents are more comfortable with her home than with the 'other' older sibling. Cara loves county music almost as much as she loves making cupcakes. She got a guitar for Christmas but she is struggling to play it I hear. Don't worry, she'll get lessons soon. If you ever need cupcakes for a birthday party please let her know her rates are reasonable ;) Cara has an amazing sense of humor. Whomever marries her will never have a dull moment. Fun fact about Cara- She just learned last week that Delaware was a state in the United States, for real. We laugh with her though, not at her. I can't wait to get home and get to know Cara more. I am positive that she will be feeding me and taking extra special care of me. She will be known as my second mom for sure.

Thanks for checking in on me! See you soon! Enjoy the pictures!

<3 <3 <3 Johnny

 

Do you like my heart shaped lips? I get them from my dad (lucky me) 

Home in my momma's arms

 

 Cara loves to hold me when she visits

 



My Sister Olivia

While I'm laying here with nothing to do except think about stuff....people....places.... I figure I'll tell you about my family. I have four brothers and two sisters. Maybe by the time I'm done telling you about each of them I'll be able to come home. Sound good? Okay, here we go--

My sister Olivia is 6 six years old. She'll be 7 in May. I think she is trying to become my best buddy. When she comes to visit me she holds me and reads to me. She also listens to music with me and watches shows on her Kindle with me. She doesn't let my mom hold me when she's there. I'm excited to go home for lots of reasons but one of them is that she and I will be room mates. Mom has my crib all set-up in her room. I'll try not to wake her up at night. We'll see how that works out.

She is a girly girl. She loves pink things, stuffed animals, hearts, strawberries, and marshmallows. My parents think that she will be an Olympic level gymnast one day. She's built for it. She is a big helper around the house. She likes to wear her footie pajamas as soon as she gets home from school. Her voice is squeaky and it fits her adorable personality just right. When grows up she wants to be an artist. She wants to learn to play guitar too.

Olivia was really upset when she found out I was a boy and not a girl. She had her little life all planned out-- painting nails, talking about boys, doing hair, you know all the stuff girls do. She was upset at first but now she's excited to have me. I think she realized that we can/will still be great buddies as we grow up together (I might let her paint my nails every once in a while but don't tell anyone).

I love my sister Olivia. She is amazing! You might recognize some of these pictures from other posts. And a couple of them predate my existence on earth. I hope you enjoy them!

<3 <3 <3 Johnny

This is Olivia when she found out I was a boy. Funny now, wasn't then.

This was her with me today.

 

 

 

She is silly isn't she?

Hello there my friends. I'm still just hanging out in Philly. Nothing has really changed for me. My oxygen level is as low as room air. I will need to sustain that for a few days while I maintain my oxygen saturation. I continue to eat from bottle a little at a time. I eat every three hours a total of 90ml. I take about half of that in my bottle and the rest through my feeding tube. I would really like to have the tube gone before I go home and so would my parents. Speaking of my parents, they come up to see me still everyday. My Oma and Opa visit me often too. My mom and dad also have to take some classes before I can go home. Two of them are CPR and the feeding tube class (if I'm still using it). They have to be able to take out the tube and insert it in me should there be a problem. I'm sure they are looking forward to that.

Thanks for checking in on me!

<3 <3 <3 Johnny

That's Olivia. She reads to me until I fall fast asleep. I like it..

More Pictures of Me!

 

My mom now gives me a Mohawk for some unknown reason. AND I wear big boy clothes now!What do you think?

 

 

"I hate stripes and orange ain't my color". Sorry, I couldn't help but sing some Brandy Clark in this outfit. You should YouTube it. It's a catchy song. :-)

 

 

That's what I look like when I am being burped.

In momma's arms!

She didn't give up and I eventually opened my eyes.

Doin' Time

I don't have anything too exciting to report. No news is good news though right? I am back on oxygen but only as a precaution. There was no indication that I needed it other than it is better for me to have it to help the healing process. I was moved from my cozy little bed to a crib which makes me feel a little bit like a big boy and a little bit like a prisoner. I still don't have any idea when I'll be going home. I am eating a portion of my food from a bottle and the rest is fed to me through my feeding tube. As long as I can a handle a little more of the bottle each time I feed I know that I am heading in the right direction. I can always get sent home with a feeding tube if the doctors feel its the best thing for me. I'd rather go home 100% on a bottle.

For now I just hang out here in my cell. Waiting for my family to come and see me, waiting until I can get sent home. Looking forward to seeing my mom is what I do.

Fun fact-- My dad's cell phone picture count: Me- 300, Matthew- 75, the other kids- 3 or 4 each, respectably. My parents thought that Matthew would be the one that gets sold into Egypt by his siblings but I feel like I should start worrying about my own welfare when I get home. Please no one bring me a fancy robe to wear.

<3 Johnny

                             That's me and Cara. She gets so excited when she holds me.

                                                                     My new cell.

                                                 That's me singing opera to my dad. ;-)

Hello again...

I turned two weeks old yesterday. Where does the time go? I made another small step to improve. My oxygen was completely turned off. I am breathing on my own all by myself. I know, I'm like all grown up now. I'll be looking at colleges next week. But seriously I feel better and I look better. All of the fluid I have retained is almost gone. They say the camera adds 10 pounds but for me it was just the excess fluid. You'll see how much better I look in the pictures below.

Of course my mom came to visit me again today. And of course she got to hold me. I was awake and alert while she held me too. It was awesome. She didn't get any pictures of us together today because she was holding me but I'm sure she has our picture in her mind and in her heart. :-)

I finally got to meet my big, big, big, big brother Isaac. He usually stays home and watches the other kids while my parents come to visit. He wasn't sure what to do when he came. He just kind of pet my head like a kitten. Too bad I couldn't bite his hand. Cara came with my dad tonight too. She got to hold me. She liked it until her arm went numb. I enjoyed having them here with me. I didn't bother to open my eyes for them though, that would have required too much energy. I cant believe what they did to me. Are you ready for this? They gave me a Mohawk! Or as my dad would call it a Brohawk. Whateva, as soon as they left I had the nurse fix it.

I still don't know when I'm going home yet. I'll probably transfer back to Christiana hospital before I go home but before I do that I have to figure out how to drink from a bottle. Patience people, I'll get it.

Thank you again for your thoughts and prayers. Just because I'm doing better doesn't mean you can stop worrying about me. 

<3 <3 <3 <3 Johnny

                                                              Here's Cara holding me.

My Mohawk.

                      My dad holds my hand every time he comes to see me. It's our thing.

                                                                  My visitors today.

Look Mom, No Tubes!

Today I'm two weeks old. It's been a long and bumpy ride for me and my family. I'm still doing well and making progress though. Yesterday my mom came up to see me, twice. The drive is getting to her. Luckily she has figured out the best to come and go to avoid traffic issues. She's so brave. The best part of my day is when I see her.

What is some of the progress you ask? My breathing tube was removed! It feels so amazing to not have that thing hanging out of my mouth. I'm still on oxygen to help with the transition off of the breathing tube but it's just the kind that a little old lady wears to bingo night. The tubes goes around my face and two little tubes go in my nose.

The best news of all- MY MOM GOT TO HOLD ME! ! ! ! ! ! It was a special moment for us. I kept my eyes open for a few minutes and just enjoyed the view. It was kind of difficult for my nurse to position me to her. I still have an IV attached, feeding tube, heart monitor, and electrodes on my head. It was well worth the difficulty to be in her arms. The feeling of her holding me was indescribable, for both of us. Something that I constantly thought about. And the moment had come. It was everything I hoped it would be.

I could still be here for a week or more. We're not really sure how long. We just enjoy and appreciate the progress that I continue to make.

Enjoy the pictures of me and my momma! <3 Johnny

                                                       There's the moment I hoped for!

                                                  My dad holding my hand.....again.