Today is Wednesday.
What a really great day!!
I was about 1/4 of the "squirmy archy" that I normally am, so this is a GOOD thing. The Prevacid and Zantac did their job today.
My mommy decided to cram more calories into less volume, and this seemed to be a good thing. I have such a small belly from my surgery that it hurts when a lot of food goes into it. I am still on a continuous feed drip system. My mommy feels like a Nurse (I guess she is...for me.)
My Nana watched me today so my mommy could take a good long MUCH NEEDED nap.
She is still having a hard time sleeping with my breathing the way it is. It's pretty loud at times & sounds like I am working pretty hard, but that's just how I am.
My brother is still having a hard time with me being home and getting alot of the attention that he used to have, but we're slowly bonding...we just need some time.
My sister is in total baby heaven and my mommy and daddy are so happy to have her help.
My g-tube is feeling a little better. My mommy and daddy "anchor" it down with alot of tape to keep it from moving.
Since my mommy was gone with me for over 5 weeks at the bigger hospital, she had a ENORMOUS pile of hospital, doctor, specialists, radiology, procedure and more bills to go through and get figured out. She got through a few inches of them today, and felt pretty good about that. "One thing at a time" is what I have tried to teach her...(she is learning..I am making her learn this lesson.)
Feeling very thankful that today was a good day...very thankful indeed!
Love to you all...
I'm Three
Wednesday, March 30, 2011
DAY OF LIFE 115
Today was another restless, irritable day.
I am just not a comfortable baby. I will try and sleep for about 15-20 minutes and then I stir around and cry because I just don't feel very good. My cry is still really soft and my parents have decided that my cry probably won't get louder until my reflux lets up, and I am still refluxing. I am even on a full dose of Prevacid and Zantac too. (My parents probably should have invested in "stock" for these. Ha! Ha!)
I am a mystery.
The lady at the Insurance Company called my mommy today and even she "knows" how irritable I am (she read the notes IN the computer from my hospital stay - I guess word gets around when you are a cranky baby, huh?)
I am still eating on a "continuous" feed and my mommy and daddy are learning really fast why I had a Nurse 24/7..around the clock...I am a FULL TIME JOB. They are excited to condense my food down so that I can get "unhooked" from my tube for some of the day.
BUT...even with the amount of work that I am, they are very happy with their decision to push hard to get me out of the hospital..I may be cranky, but at least I am not cranky AND then getting poked AND prodded AND assessed on top of my crankiness.
My brother is still having a little bit of a hard adjustment with me being home, he misses what it was like BEFORE I came...he also thinks he broke his toe, so he's feeling pretty bummed about that and on crutches to boot.
BUT...
my sister can't get enough of me. She just wishes I didn't have this darned g-tube in so she can give me a "real" hug and hold me in a "real" cuddle position (without me hurting) AND give me a real bath (not a sponge one.)
My g-tube is pretty sore and my parents have to keep cleaning and changing out my dressing on it.
My mommy is still not sleeping very well because of how "noisy" I am when I sleep. My breathing sounds like I am working really hard to get air in, so she has a hard time blocking this out and falling asleep because she is worried about me. Lack of sleep makes my mommy a "little" bit cranky (I think everyone recognizes this, even her.) Lack of sleep PLUS an EIGHT inch pile of hospital bills and mail from the past 1.5 months while she was away was a little overwhelming today....
BUT...
My Nana is still here and she is a real life saver. Our house is still "running" smoothly because of her and my mommy and daddy are so grateful.
PLUS...My mommy's friend brought us dinner tonight too...
Talk about blessings..we sure have them!!
Also..today is my Aunt's Birthday..love you tons Aunt Lisa!!
Keeping the faith...Keeping the faith...
I am just not a comfortable baby. I will try and sleep for about 15-20 minutes and then I stir around and cry because I just don't feel very good. My cry is still really soft and my parents have decided that my cry probably won't get louder until my reflux lets up, and I am still refluxing. I am even on a full dose of Prevacid and Zantac too. (My parents probably should have invested in "stock" for these. Ha! Ha!)
I am a mystery.
The lady at the Insurance Company called my mommy today and even she "knows" how irritable I am (she read the notes IN the computer from my hospital stay - I guess word gets around when you are a cranky baby, huh?)
I am still eating on a "continuous" feed and my mommy and daddy are learning really fast why I had a Nurse 24/7..around the clock...I am a FULL TIME JOB. They are excited to condense my food down so that I can get "unhooked" from my tube for some of the day.
BUT...even with the amount of work that I am, they are very happy with their decision to push hard to get me out of the hospital..I may be cranky, but at least I am not cranky AND then getting poked AND prodded AND assessed on top of my crankiness.
My brother is still having a little bit of a hard adjustment with me being home, he misses what it was like BEFORE I came...he also thinks he broke his toe, so he's feeling pretty bummed about that and on crutches to boot.
BUT...
my sister can't get enough of me. She just wishes I didn't have this darned g-tube in so she can give me a "real" hug and hold me in a "real" cuddle position (without me hurting) AND give me a real bath (not a sponge one.)
My g-tube is pretty sore and my parents have to keep cleaning and changing out my dressing on it.
My mommy is still not sleeping very well because of how "noisy" I am when I sleep. My breathing sounds like I am working really hard to get air in, so she has a hard time blocking this out and falling asleep because she is worried about me. Lack of sleep makes my mommy a "little" bit cranky (I think everyone recognizes this, even her.) Lack of sleep PLUS an EIGHT inch pile of hospital bills and mail from the past 1.5 months while she was away was a little overwhelming today....
BUT...
My Nana is still here and she is a real life saver. Our house is still "running" smoothly because of her and my mommy and daddy are so grateful.
PLUS...My mommy's friend brought us dinner tonight too...
Talk about blessings..we sure have them!!
Also..today is my Aunt's Birthday..love you tons Aunt Lisa!!
Keeping the faith...Keeping the faith...
Monday, March 28, 2011
DAY OF LIFE 114
Today was a really good day!! It was SPRING outside and we opened the doors to let fresh air in.
My mommy is still very nervous about taking me out, but if it stays warm, she might think about a "walk."
I got a lot of rest and I love it!
I "HAD" to go into my "first" Pediatric doctor appointment. It took my daddy, my mommy and my sister to get "all" my "stuff" into the appointment. I'm pretty complicated. They didn't want to take me "anywhere" there are sick people right now because I my immune system has been so compromised, so they were SO careful..touching nothing and not letting my poor sister touch anything either. (I know it probably looks way over the top and people think my mom looked a little "loony tunes" wiping everything down, but she figures after she sat in an ICU for 112 days, she has the right to be "careful."
The doctor commented on how "well" my mommy and daddy knew my "behavior" and "patterns" because of my striderous "breathing" and my "archy" position too. "Classic Severe Reflux Behavior" is what he said when he saw me.
I am just getting such great rest here. Most of my best rest is while I am laying flat on my mat,,,I love it. THIS IS WEIRD because people with severe reflux have a hard time laying "flat."
Daddy is so glad to have mommy home so he can help her with me. My g-tube requires a LOT of work, so my daddy is there for moral support as my mommy works her medical magic. He's felt queeze a few times and I think it may be it is hard to watch your own child be in pain.
Either way...the g-tube is in and looking great!
My mommy made an executive decision that we (Zachary & M'Kayla) could take 2 days off this week so we can catch up since we want some "bonding" time with me and my mommy was gone for over 6 weeks.
They need some "mommy time" because the are feeling left out a little bit now that Ben is home. I don't think they quite know "how" to adjust in a positive way, adjust without being upset.
My mommy has no intention of ever hurting my brother and sisters feelings, but "change" has come to our house and with "change" comes adjustment too. They 'll get it and soon we'll all be bonded/
Well....I am so sleepy and so is my mommy and my daddy, so we are turning in.
We love your guts like nuts and are thankful for your faith of wellness for my perfect life!!
My mommy is still very nervous about taking me out, but if it stays warm, she might think about a "walk."
I got a lot of rest and I love it!
I "HAD" to go into my "first" Pediatric doctor appointment. It took my daddy, my mommy and my sister to get "all" my "stuff" into the appointment. I'm pretty complicated. They didn't want to take me "anywhere" there are sick people right now because I my immune system has been so compromised, so they were SO careful..touching nothing and not letting my poor sister touch anything either. (I know it probably looks way over the top and people think my mom looked a little "loony tunes" wiping everything down, but she figures after she sat in an ICU for 112 days, she has the right to be "careful."
The doctor commented on how "well" my mommy and daddy knew my "behavior" and "patterns" because of my striderous "breathing" and my "archy" position too. "Classic Severe Reflux Behavior" is what he said when he saw me.
I am just getting such great rest here. Most of my best rest is while I am laying flat on my mat,,,I love it. THIS IS WEIRD because people with severe reflux have a hard time laying "flat."
Daddy is so glad to have mommy home so he can help her with me. My g-tube requires a LOT of work, so my daddy is there for moral support as my mommy works her medical magic. He's felt queeze a few times and I think it may be it is hard to watch your own child be in pain.
Either way...the g-tube is in and looking great!
My mommy made an executive decision that we (Zachary & M'Kayla) could take 2 days off this week so we can catch up since we want some "bonding" time with me and my mommy was gone for over 6 weeks.
They need some "mommy time" because the are feeling left out a little bit now that Ben is home. I don't think they quite know "how" to adjust in a positive way, adjust without being upset.
My mommy has no intention of ever hurting my brother and sisters feelings, but "change" has come to our house and with "change" comes adjustment too. They 'll get it and soon we'll all be bonded/
Well....I am so sleepy and so is my mommy and my daddy, so we are turning in.
We love your guts like nuts and are thankful for your faith of wellness for my perfect life!!
Sunday, March 27, 2011
DAY OF LIFE 113
Today was a little rough...
I am STILL refluxing pretty badly..even though I am keeping it down.
My mommy and daddy are feeling a little overwhelmed today because for the first time, they have to deal with all my "tubes" and "stuff" without Nurses.
My mommy didn't sleep last night because I am so noisy and she is very "in tune" with me.
I "sound" like I have a built in "squeaky" toy and I am "fighting" to get air in.
Of course I don't have a squeaky toy in me..So, here is what it really is..when I reflux, it comes "UP" still and my throat is still pretty swollen so it sounds like I am "fighting" to get air in.
I have learned "how" to get enough air in through this swelling . It's also pretty "positional" too, so if I get my head back far enough then I can "open" my airway up and get more air in. Or if they put me on a BOPPY pillow, that helps too sometimes.
When I do this, I get "arched" back as far as I can and it looks pretty "uncomfortable" but it's "how" I have learned to deal with this. I guess you do what you have to, huh?
My brother asked my mommy today if I was "really" ready to come home because I sound like I am "struggling" so badly AND I keep refluxing. He is worried since he hasn't been around me a lot yet, but I am okay..this is just my life right now and I have fought so hard to keep it, a little reflux isn't going to keep me down.
My mommy did have a crying meltdown (probably lack of sleep AND not to mention that I'm a full time job with all my medical "stuff")..SO...THANK GOODNESS Nana is here to hug her and tell her to take it ONE DAY AT A TIME. (Very good advice.)
My mommy and daddy know how I "sound" and that I "still" reflux, but that's just the way it is for me right now BUT they HAD to get me OUT OF THAT hospital...they just had to.
Being home is a HUGE life adjustment for my family because of all my medical "stuff," BUT I am TOTALLY worth it!!
They are so thankful for all their friends and family AND FOR Nana too!!
PS: A HUGE THANK YOU to my mommy's friend who loaned her a TON of stuff for me. We sure appreciate you!!
I am STILL refluxing pretty badly..even though I am keeping it down.
My mommy and daddy are feeling a little overwhelmed today because for the first time, they have to deal with all my "tubes" and "stuff" without Nurses.
My mommy didn't sleep last night because I am so noisy and she is very "in tune" with me.
I "sound" like I have a built in "squeaky" toy and I am "fighting" to get air in.
Of course I don't have a squeaky toy in me..So, here is what it really is..when I reflux, it comes "UP" still and my throat is still pretty swollen so it sounds like I am "fighting" to get air in.
I have learned "how" to get enough air in through this swelling . It's also pretty "positional" too, so if I get my head back far enough then I can "open" my airway up and get more air in. Or if they put me on a BOPPY pillow, that helps too sometimes.
When I do this, I get "arched" back as far as I can and it looks pretty "uncomfortable" but it's "how" I have learned to deal with this. I guess you do what you have to, huh?
My brother asked my mommy today if I was "really" ready to come home because I sound like I am "struggling" so badly AND I keep refluxing. He is worried since he hasn't been around me a lot yet, but I am okay..this is just my life right now and I have fought so hard to keep it, a little reflux isn't going to keep me down.
My mommy did have a crying meltdown (probably lack of sleep AND not to mention that I'm a full time job with all my medical "stuff")..SO...THANK GOODNESS Nana is here to hug her and tell her to take it ONE DAY AT A TIME. (Very good advice.)
My mommy and daddy know how I "sound" and that I "still" reflux, but that's just the way it is for me right now BUT they HAD to get me OUT OF THAT hospital...they just had to.
Being home is a HUGE life adjustment for my family because of all my medical "stuff," BUT I am TOTALLY worth it!!
They are so thankful for all their friends and family AND FOR Nana too!!
PS: A HUGE THANK YOU to my mommy's friend who loaned her a TON of stuff for me. We sure appreciate you!!
DAY OF LIFE 112
Today is my BIG, HUGE day!!
My daddy is taking a shuttle from to come and get me from the hospital.
My mommy called and the Nurse told her that I had LOST 70 grams so they were "concerned" about letting me go home.
My mommy told them that they WERE planning to take me home TODAY and we would work with my Pediatrician to help me gain weight.
So...my daddy arrived and we packed up all my stuff (boy was it A LOT) and we headed out.
It was such a surreal experience for my mommy and daddy..they kind of couldn't believe it as they walked OUT OF THE HOSPITAL WITH ME.
Daddy rode in the back seat of the car with me...tubes AND all while mommy drove the car. He said it was "his" turn to help me since mommy had been with me all this time.
I didn't like my car seat too much and had to stop a few times, but we finally made it home and boy were my brother, sister and Nana HAPPY to see me!!
They took me right in my room and held me tubes AND all. Even my doggie Sammy was happy to see me - even though he didn't know "who" I was.
I was a little afraid and didn't know what was going on...it was a little overwhelming for me, but it was a relief for my family, to FINALLY bring me home after 112 DAYS of being in the hospital.
My family is feeling pretty thankful tonight..so am I (I won't be assessed or poked for the FIRST time in my life.)
Good night friends!!
My daddy is taking a shuttle from to come and get me from the hospital.
My mommy called and the Nurse told her that I had LOST 70 grams so they were "concerned" about letting me go home.
My mommy told them that they WERE planning to take me home TODAY and we would work with my Pediatrician to help me gain weight.
So...my daddy arrived and we packed up all my stuff (boy was it A LOT) and we headed out.
It was such a surreal experience for my mommy and daddy..they kind of couldn't believe it as they walked OUT OF THE HOSPITAL WITH ME.
Daddy rode in the back seat of the car with me...tubes AND all while mommy drove the car. He said it was "his" turn to help me since mommy had been with me all this time.
I didn't like my car seat too much and had to stop a few times, but we finally made it home and boy were my brother, sister and Nana HAPPY to see me!!
They took me right in my room and held me tubes AND all. Even my doggie Sammy was happy to see me - even though he didn't know "who" I was.
I was a little afraid and didn't know what was going on...it was a little overwhelming for me, but it was a relief for my family, to FINALLY bring me home after 112 DAYS of being in the hospital.
My family is feeling pretty thankful tonight..so am I (I won't be assessed or poked for the FIRST time in my life.)
Good night friends!!
Friday, March 25, 2011
DAY OF LIFE 111
Today is Friday and I got the coolest news....
They are sending me HOME tomorrow!!
My parents are so excited and full of all kinds of emotion, like, joy, happiness, gratitude, relief, hope, and sincere compassion for the families still here dealing with medical stuff.
They feel like they have climbed a HUGE mountain of lots of tears and frustration, but they are at the top finally and there are so many feelings...it's hard to express into words.
I passed my car seat test with flying colors!
My mommy got the "I am still very fragile" talk today and the Nurse was pretty adamant about keeping me "inside" and "away" from people until I get stronger since I have had so many medical issues. This is good advice..I need to stay well.
She also got a "new" pump for my food today AND lots of other medical stuff to take care of me at home.
Sometimes, they will ask the parents to "room" in at the hospital, but they said that "unless they really wanted to, they know that my parents know how to take care of me, so they can just take me home tomorrow and "skip" the room in."
My daddy will take the shuttle from home tomorrow to meet my mommy and then they will pack me up and take me home FOR THE FIRST TIME!!
Thank you all for your love, your support, your phone calls, your text message, your e-mails and most importantly...your unwavering FAITH in my wellness...
It will be an exciting day for us all...chapter two will begin, so I am going to get some sleep so I'll be ready for the BIG DAY!
They are sending me HOME tomorrow!!
My parents are so excited and full of all kinds of emotion, like, joy, happiness, gratitude, relief, hope, and sincere compassion for the families still here dealing with medical stuff.
They feel like they have climbed a HUGE mountain of lots of tears and frustration, but they are at the top finally and there are so many feelings...it's hard to express into words.
I passed my car seat test with flying colors!
My mommy got the "I am still very fragile" talk today and the Nurse was pretty adamant about keeping me "inside" and "away" from people until I get stronger since I have had so many medical issues. This is good advice..I need to stay well.
She also got a "new" pump for my food today AND lots of other medical stuff to take care of me at home.
Sometimes, they will ask the parents to "room" in at the hospital, but they said that "unless they really wanted to, they know that my parents know how to take care of me, so they can just take me home tomorrow and "skip" the room in."
My daddy will take the shuttle from home tomorrow to meet my mommy and then they will pack me up and take me home FOR THE FIRST TIME!!
Thank you all for your love, your support, your phone calls, your text message, your e-mails and most importantly...your unwavering FAITH in my wellness...
It will be an exciting day for us all...chapter two will begin, so I am going to get some sleep so I'll be ready for the BIG DAY!
DAY OF LIFE 110
Today is Thursday...
A BIG...HUGE..MONUMENTAL day!!
I am tolerating full food volume!!
My picc line came out!!
I am doing my car seat test later today too!!
They were kind of worried about me because I stayed awake ALL DAY long yesterday, but I slept like a CHAMP last night...
So, my mommy just thinks I am getting into an "older" baby routine and staying "awake" during the day and "sleeping" at night....
They want me to tolerate this new volume until AT LEAST Saturday...AND stay well...and then we can talk about the "H" Word...going H-O-M-E!!!
That's just a couple of days, so I can do this...I can do this..I can do this...
Thank you all for keeping the faith for my wellness!!
A BIG...HUGE..MONUMENTAL day!!
I am tolerating full food volume!!
My picc line came out!!
I am doing my car seat test later today too!!
They were kind of worried about me because I stayed awake ALL DAY long yesterday, but I slept like a CHAMP last night...
So, my mommy just thinks I am getting into an "older" baby routine and staying "awake" during the day and "sleeping" at night....
They want me to tolerate this new volume until AT LEAST Saturday...AND stay well...and then we can talk about the "H" Word...going H-O-M-E!!!
That's just a couple of days, so I can do this...I can do this..I can do this...
Thank you all for keeping the faith for my wellness!!
DAY OF LIFE 109
Today is a wonderful day!!
I haven't even had any Ativan or Tylenol either...
Today they are increasing my food to my "full" volume. They are doing a "continuous feed" drip on me and so far...so great!!
Today is my last dose of antibiotics too so once that is done AND I am on full food volume, I can then get this ugly picc line out!!
I feel like a new little man...and I look like one too!!
So grateful for all the people keeping the faith for my wellness!!
I haven't even had any Ativan or Tylenol either...
Today they are increasing my food to my "full" volume. They are doing a "continuous feed" drip on me and so far...so great!!
Today is my last dose of antibiotics too so once that is done AND I am on full food volume, I can then get this ugly picc line out!!
I feel like a new little man...and I look like one too!!
So grateful for all the people keeping the faith for my wellness!!
Thursday, March 24, 2011
DAY OF LIFE 108
Today is seriously a GREAT DAY!!
I am like a new boy...
I slept for 7 hours last night and I NEEDED IT!! I did have a little help from my friend, Ativan.
I had some "mat on the floor" time today with the Ocupational Therapist.
She was teaching my mommy some ways to get me to not "arch" so much and to turn my head to the "left" since my head is getting a little flat on the "right' side.
She also made some observations about my eyes. I have a tendency to "look" past things and I don't really find something to focus on and follow it "yet." My Nurse Practitioner says that I am just "looking at angels" and that is "what" I am focusing on right now. They KNOW I can see "light" because I close my eyes when light is shined toward my eyes, but I seem to look up and not want to "zone in" and "track" on anything "yet"...but I will...I will..
Overall, it was a fantastic day...I love to be out of my crib!!
The results of the echocardiogram came in today and...I AM TOTALLY NORMAL. The "Ventricular Septal Defect" that I once had is GONE!!!
I am going to go "up" on my food again and everyone is cheering me on...
Keeping the faith for my wellness!!
Keeping the faith for my wellness!!
DAY OF LIFE 107
Hard day AND night for me.
I am just not sleeping for some reason. I am only getting small cat-naps.
I didn't gain any weight, but on a positive note...I didn't lose any either.
I just need to be at home where it is "quiet" and I can rest without any disturbances so I can "rest and grow."
I had to have Ativan a few times because I was so agitated.
They are increasing my food today and everyone is crossing their fingers that I can tolerate it.
I am still on my antibiotics because my CRP went UP instead of down. I am a mystery for sure.
My mommy thinks that my baseline CRP is higher because of all my reflux. That's "her" guess and it's ALL a "guess" anyway, but I am sure they would love for me to start "talking" and just tell them how it should be.
I did have an echocardiogram and they were looking at the Ventricular Septal Defects that I had...the results won't be back until tomorrow though...
So grateful for all the people keeping the faith for my wellness!!
DAY OF LIFE 106
Today was an amazing day...
I love to sit up and look around...
I smiled for the FIRST TIME (that my mommy saw) today when I was awake.
No Ativan in 24 hours
My CRP (number that detects inflammation in the body) has mysteriously gone up o 4.5, but I think it's because I have reflux still - even though it is NOT coming "up" and "out" like it was...I still have it, and reflux can cause inflammation.
Thank you all for your love and prayers...keeping the faith for my wellness!!
Thank you all for your love and prayers...keeping the faith for my wellness!!
DAY OF LIFE 105
Today is an exciting day BECAUSE... They are "increasing" my food PAST the point we were able to get "last" time before I quit "tolerating" my food all together. The small increase will put me at 80 per kilo, and in order to go home without IV TPN fluids, I need to be at 150 per kilo, so I am 1/2 way there. 150 is what I need to grow and get bigger. Once I am there and tolerating it, they can get this painful picc line OUT and I can go H-O-M-E. I am up 20 grams today, so I "officially" weigh: 3380 grams = 7 pounds 4 ounces. I am wearing "newborn" outfits and they fit pretty good. I am still refluxing, but I am swallowing it back down. I am on BOTH Zantac & Prevacid and I NEED them both to be a HAPPY CAMPER. My voice is still really soft and it's hard to hear me, but my mommy and the nurses keep a good eye on me. I seem to be bored. I am very strong and can hold my head up and if I grunt really hard, I try really hard to sit up when I am elevated in my crib. I miss my family very much and I cannot wait to go home where my brother and sister can entertain me. Keeping the faith for this... |
DAY OF LIFE 104
It was a pretty good day and I have only had 1 dose of Ativan in a 24 hour period.
They increased my food just a little bit and so far, so good.
I am refluxing a little and it hurts, but I am keeping it down.
My CRP (number that detects inflammation) is up again slightly, to a 4 and I am already on 3 major antibiotics, so again...they are scratching their heads.
The new Doctor on duty is a pretty good and conservative Doctor, so he thinks I may just have a "high" baseline and he wants to "wait" and see what I do because I really don't "act" sick.
They did order another blood draw from my picc line to check another culture, but it will take a few days to see "if" anything grows.
I got my RSV synagis shot today, so I am good for another month.
I had some special visitors today - my Uncle, my Aunt and my mommy's special friend from home.
She was glad to see "familiar" faces.
So grateful for all the people keeping the faith for my wellness!!
DAY OF LIFE 103
I had a pretty good night after they stopped my food for a little while and then restarted it again later on.
My "ph test" indicated that I should probably get Prevacid added back in, so they started me on this, along with Zantac "in" my g-tube.
They increased my food today to 7.5 ml per hour and decreased my IV fluid down a little too.
I kind of sound like a "squeaky toy" when I breathe, but since my oxygen saturation remains "high."
The "new" Doctor on duty doesn't seem to worry too much after my mommy told him that I sometimes sound like this and to not be alarmed, it's "normal" for me.
The "new" Doctor on duty doesn't seem to worry too much after my mommy told him that I sometimes sound like this and to not be alarmed, it's "normal" for me.
I only got one dose of Ativan today and that seemed to do the trick as I was able to get some good rest and I wasn't totally sedated all day. Good rest is what I need.
On a different note, my Grandma Foster was on my heart today. She is a special lady with a HUGE heart. She has taken care of my cousin Abe for his whole life. Abe went to heaven last night. He had a lot of respiratory problems that stemmed from a condition called "Sanfilippo Syndrome." (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002190/)
I think he has suffered for a long time and I am glad that that he is no longer in pain, AND best of all, he gets to be in a perfect body, he gets to be with his mommy (Miriam) and his Grandpa (Bob.) He's been with us for a long time and we will miss him very much.
Thank you for keeping the faith for my TOTAL and COMPLETE wellness!!
Thank you for keeping the faith for my TOTAL and COMPLETE wellness!!
DAY OF LIFE 102
Today has been kind of a strange day...
I had the best day yesterday and the best night too. I was really calm and happy WITHOUT any pain or sedation medication. The Occupational Therapist came to work with me and she thinks that some of my behavior is "neurologically" related, but she isn't sure (for example, my body posture being archy..my eyes always looking "up" and a few others.) - - - But my mommy just thinks I am tired of this bed and I am trying to "arch" my way OUT of it.
Around 11:30, before they increased my food, I started to cry AND cry AND cry. I literally cried and cried for over four hours. I would go to sleep for a brief few minutes and then I would "startle" and wake myself up crying frantically again.
I am NOT resting peacefully, as I am doing a strange "twitch" which wakes me up and then I cry more.
They are not sure "what" is going on..
Ativan withdrawals?
Surgery discomfort?
They have decided to stop my food so they can get an accurate PH reading in from the contents out of my g-tube.
Well, the PH came in at 2 and YES, I am back on Prevacid again and they've restarted my food.
(my mommy asked for Prevacid when they started food but was told I shouldn't need now with all my surgeries.)
(my mommy asked for Prevacid when they started food but was told I shouldn't need now with all my surgeries.)
Tonight is bath night and hopefully this will help me go to sleep "soundly." I need it and so does my mommy.
PS. I weigh 7 pounds and 3 ounces. YEA!!
Sticking to the faith of wellness!!
Sticking to the faith of wellness!!
DAY OF LIFE 101
Today is Tuesday, and it has been a great 24 hours.
My breathing is better...a lot less striderous..maybe this means my swelling is starting to go down. I am on Vancomycin, Gentamicin & Zosyn antibiotics.
They did two more sticks on me today..I am kind of getting used to these heel sticks...one stick for a "trough" test and one stick for a "peak" test on the Gentamicin. They need to make sure that my antibiotic levels aren't too "high" or too "low." They also did another CRP and my level of inflamation is coming down, so the antibiotics are working.
My mommy was happy today because my nurse is "conservative" with sedation. I only needed 3 doses of Ativan in 24 hours, which is down from my "usual" dose. All of the Ativan was given last night, and I was a happy camper during the day, so I didn't need it.
I am not archy or in pain and they increased my food to 4 mils per hour. So far..so good.
My g-tube is healing up and overall, it's been a great day.
Remaining strong in the faith for wellness...
Remaining strong in the faith for wellness...
DAY OF LIFE 100
I am 100 days old today...boy time flies!! Today is a pretty low key day. I had 2 sticks today so they could check the "trough" and "peak" levels on my antibiotics for my "mystery" infection. Since I have had pseudomonas in the past, they want to make sure and cover for it in these antibiotics...just in case I try and pull a "surprise" on them. They "slightly" increased my food today to 3 mills per hour. I am still receiving Ativan sedation every time they can give it to me. My mommy thinks I am getting "dependent" on it, and she may be right. My mommy thinks that my "Ativan" usage has gone up since I have been here because I get so irritated with noise (ie: babies crying, people coming in and out; cleaning, emptying trash, people talking, etc..etc..etc..) I like things Q-U-I-E-T. I had a special visitor today from St. George. One of my Neonatologists came with his wife. My mommy was almost brought to tears when she saw them because she misses familiar faces. I felt pretty special that he took time out of his vacation to come and visit me. It was a good day for a visitor because my mommy had a crying melt-down. She has been in the hospital with me for 100 days and knows how "I" like things done. The nurse she had today didn't want her to do a procedure in a "certain way" that my mommy had been used to doing it. It's hard for my mommy be told what she "can" and "cannot" do with me. It's hard for her because she cannot just walk into the room and pick me up because I have so many cords and tubes, so she always has to have help to get me in and out. It gets very frustrating. (Thank goodness she can call my daddy AND Nana and they listen to her "vent.") Overall, today was a good day and we remain faithful for my wellness.. |
DAY OF LIFE 99
Today is Sunday. It is a beautiful day outside and they opened the blinds so I could get some light.
They started me back on food today. Elocare formula. Due to my lack of tolerance last time, they are going REALLY slow. Like, 1.5 mills per hour, slow.
Since we are treating this "mystery" infection "blindly" and still looking for answers today my mommy and daddy consented to doing a LP (Lumbar Puncture) to get some fluid out of my spinal cord so we could rule OUT a bacterial meningitis infection. The reason they consented to this is because after my blood draw, they found that my CRP (a way of determining inflammation) went UP again, not down after already being on strong antibiotic.
A "LP" is a sterile procedure and one of my favorite nurse practitioners (at this hospital) was able to do the procedure. They explained it to my mommy I needed to be held kind of in the same "position" as when "she" had her epidural. Kind of curled up.
To help me relax, they gave me Ativan 2 hours before, Fentanyl 30 minutes before and Ativan 30 minutes after the procedure. I was pretty gorked out "afterwards" but during the procedure, I surprised them yet again...I am a fighter because I didn't "calm" or "quit squirming,"...even with all of that sedation. I was a moving target and I did NOT like to be curled up and held in that weird position AT ALL.
It takes 3-5 days for the culture to grow out completely, but the blood tests that they ran on the LP fluid, didn't show an indication of meningitis.
After my procedure, I slept for a very long time.
Remaining faithful for my total wellness!!
What is a Lumbar Puncture?
DAY OF LIFE 98
Today is Saturday and I am still being fed soley on IV fluids.
My mommy was a little (a lot actually) frustrated at all the testing they HAVE done and are STILL doing on me each day.
All of the testing is making me get NO-REST...AND... I have another infection to boot...so she wanted to discuss these concerns with the Doctor in the "daily rounds."
All of the testing is making me get NO-REST...AND... I have another infection to boot...so she wanted to discuss these concerns with the Doctor in the "daily rounds."
My CRP is 5.8, which is up from 4.0. We aren't sure "why" this is going up. Another surpirse...I am full of surprises...Could it be a mystery infection?
During the rounds, the Doctor gave my mommy a few "options" for me.
Due to my 9/14 translocation, he wanted her to think long and hard about "how long" she wanted to keep going "forward" with "medical" procedures and how aggressive her and my daddy wanted to be.
He said that no one knew for sure how long my life span would be or what the quality of my life would look like and he wanted them to consider how long of that time they wanted to spend IN the hospital, running tests.
So, he wanted to be sure that she and my daddy wanted to continue moving forward with medical intervention. He said that we can find some things and fix some things, but the underlying problem may indeed be from my translocation, and they can't fix my DNA.
He agreed that they don't know anything about a child like me (no "documented" cases) so it's all very uncertain, but he wanted to know if they were on board with keeping me in the hospital - even though I am very immune compromised, prone to infection and the longer I stay here to keep "searching" for answers, it means MORE TESTING and possibly more infections...OR...if they wanted to take me home to "hospice/comfort care" so my family could spend time with me, (without medical intervention) however long that may be.
Due to my 9/14 translocation, he wanted her to think long and hard about "how long" she wanted to keep going "forward" with "medical" procedures and how aggressive her and my daddy wanted to be.
He said that no one knew for sure how long my life span would be or what the quality of my life would look like and he wanted them to consider how long of that time they wanted to spend IN the hospital, running tests.
So, he wanted to be sure that she and my daddy wanted to continue moving forward with medical intervention. He said that we can find some things and fix some things, but the underlying problem may indeed be from my translocation, and they can't fix my DNA.
He agreed that they don't know anything about a child like me (no "documented" cases) so it's all very uncertain, but he wanted to know if they were on board with keeping me in the hospital - even though I am very immune compromised, prone to infection and the longer I stay here to keep "searching" for answers, it means MORE TESTING and possibly more infections...OR...if they wanted to take me home to "hospice/comfort care" so my family could spend time with me, (without medical intervention) however long that may be.
My mommy knows my daddy very well AND they have been offered this "option" for me before, so when she "understood" what the meaning of "hospice/comfort care" really was, she immediately said that this was NOT AN OPTION for our family. PERIOD. I am a strong little boy and have made it through so much already, and there were many times that I was much more sick than I am right now and I pulled through. If I wasn't supposed to be here, then I would have gone "home" already.
I am a fighter and I am very determined. I have a lot of support from my family and friends that make me stronger everyday. I also am NOT an accident. God made me just the way I am ON PURPOSE and I have a purpose. My purpose is to keep moving forward, and that's exactly what we are going to do.
Keeping the ultimate faith for my wellness.
Keeping the ultimate faith for my wellness.
DAY OF LIFE 97
I am TOTALLY on IV fluids again because I was so fussy yesterday so they stopped my food.
I am full of surprises...
They aren't sure "why" I am not tolerating my food..maybe I still have pain from my recent surgery? Maybe my stomach doesn't like to be "stretched." Too much pressure on my Nissen? Sore G-tube? They just don't know.
So, they started the testing again..
KUB X-Ray
CBC/CRP FULL Blood Work Up
Urine Culture (OUCH!)
In order to help me, they are alternating Ativan, Tylenol and Fentanyl. They are trying to keep me pretty "sedated" since they had so many tests and evaluations on me today..they will just keep testing until they can figure something out...
My mommy is very frustrated because after all that testing, they decided that they needed to draw MORE BLOOD from my PICC line AND from my other arm to "see" if anything grows in a blood culture from either arm.
A "risk" of putting in a PICC line is "infection" and they have to be sure that this new central line in my LEFT arm isn't infected already.
A "risk" of putting in a PICC line is "infection" and they have to be sure that this new central line in my LEFT arm isn't infected already.
Today was a long day of testing and NO resting...
Remaining faithful in my wellness...
Remaining faithful in my wellness...
DAY OF LIFE 96
Wow...what a hard, restless night..
I am hurting and I can't tell anyone why.
They keep giving me pain/sedation medication but are concerned because I am just not settling down unless I have something to take the edge off - and even then, I am not entirely restful.
They decided to only "slightly" increase my food since I was very squirmy.
BUT...I am still on ROOM AIR and doing really well.
I also weigh 6 pounds 14 ounces (exactly 3 pounds heavier than when I was born.) The doctors are not really happy with my minimal weight gain, but I'm working pretty hard at it.
Thank you to all my friends and family for keeping the faith of wellness for me!!
Thank you to all my friends and family for keeping the faith of wellness for me!!
DAY OF LIFE 95
Today is a GREAT day.
I am ALERT and AWAKE and CONTENT...all at the same time. (I have no food in my stomach as I am on IV fluids being fed to me through my PICC line.)
They want to start me on a SMALL amount of food today to see how I do.
They took off my nasal canula and I am doing great so far, unless that darned "reflux" comes up and then I have to swallow it back down so my oxygen saturation dips when that happens, but then it will come right back up.
They are talking about starting me back on Prevacid to help with this.
My airway sounds pretty striderous today, especially right after my "reflux" episodes.
My g-tube site is starting to look better....they are putting this special cream (Triamcinolone) that helps with "granulation tissue" - it's pretty powerful stuff.
Now faith is the substance of things hoped for, the evidence of things not seen....
Now faith is the substance of things hoped for, the evidence of things not seen....
DAY OF LIFE 94
I do my very best to keep these people on their toes.
I've had 6 iv's in the past 3 days & they are running out of places to "stick" me NOT TO MENTION I've had MANY heal sticks too. My heals look like pin cushions.
So..to avoid MORE IV's, they want to put in "another" central picc line as they still need iv access to "feed" me adequate nutrition while they try & work me up on my food volume.
My mommy and daddy don't like picc lines (I've already had 2 - one in my arm and one in my leg) BUT they also don't like me to have 6 IV's in 3 days either. Catch 22 situation.
The surgeon came to check on me today and my mommy again brought up why they didn't "check" for Nissen damage while they were operating. He really didn't know "why" my mommy was asking this and said that they would never "check" for Nissen damage during a "Pyloric Stenosis" surgery. They would only check for Nissen "damage" during an upper GI test.
He apologized and didn't know "where" my mommy had gotten her "mis-information." SO...my mommy had him pull out the consent that she had signed for my surgery and written right on there was a statement that indicated they would "check" for Nissen damage during the surgery.
I think that the surgeon was a little embarrassed AND frustrated too that my mommy had been told this AND she signed a consent for it BUT it never got "passed" along to him.
So..who knows if my Nissen got damaged or not...only "time" will tell. My parents will just keep the faith that it didn't.
Since I'm was "already" intubated with a breathing machine & I'm "already" getting sedation, they did an MRI on me too.
I have to be SO STILL during this process so this was good timing..
The reason for the MRI is because I had low blood sugars at birth and they aren't sure "how" long my brain was going WITHOUT sugar so they want to check and see what my brain looks like.
Guess what?...My MRI is
DAY OF LIFE 92
After my puking up blood incident last night, they decided to do an ultra-sound on my belly and low and behold..SURPRISE...they found an enlarged Pyloris.
What this means is that all of my aggitation HAS been for a reason.
When you eat, the food from your stomach goes through a canal called the Pyloris and into the intestines and "out."
BUT...when you have an enlarged Pyloris, it means the "canal" from the stomach to the intestines has grown and is blocking stuff from moving through at a "normal" rate.
During my first surgery, they made a Nissen (took my stomach and wrapped it up around my esophagus to create sort of a one way valve that is supposed to stop the reflux.)
Since that surgery, they have been forcing food into me (continuous feed) and I am not tolerating it welll at all, but they keep giving it to me AND sedating me because I am so grumpy. This made my mommy so upset everyday when I just kept getting and getting Ativan. She even at one point said that she thinks it is masking a problem, but she didn't know "what" the problem was.
This totally explains WHY my g-tube is leaking stuff OUT of it AND why I threw up too. It makes perfect sense to my gagging, wretching actions when I am being fed food too. If you put enough pressure into a small stomach, it will take the path of least resistance (out the g-tube) and when that doesn't relieve the pressure, then it goes out the next best place...UP THROUGH the newly made Nissen and OUT my nose and mouth.
Pyloric Stenosis was a condition that I was checked for while I was in the St. George hospital during my "upper GI." The contrast moved right through my belly, my pyloris, my intestines and out at a normal rate of speed. My mommy's friend also mentioned this condition and my mommy brought it up with the Doctors again and it was ruled out at that time.
Since I was being fed NJ (nasojejunal tube) feedings into my intestines, we were bypassing my Pyloris all together. I was going to the bathroom totally "normal" and so this wasn't something anyone could have known, UNTIL..they started feedings into my stomach again, through my g-tube and it didn't have a way to to pass into my intestines.
This condition is commonly found in "caucasian, 1st born males" and usually found around 5-6 weeks of age.
Since I was ORIGINALLY due on 1/30/2011, "gestationally" I was 6 weeks old today.
My mommy signed the paperwork to have my surgery tomorrow, and on the paperwork, it was written that they would also "check" to make sure the Nissen had not been compromised - since I had a fair amount of blood in my reflux last night.
If the Nissen had been compromised, then they would "repair" it.
Moving forward in faith...
What is Hypertrophic Pyloric Stenosis?
DAY OF LIFE 90
GREAT DAY!!
I am 3 months old today! YAHOO!!
I am UP 120 grams so my weight is about 6 lbs 11 oz.
They "slightly" increased my food again today & that's a good thing! I wretched a couple of times today, but nothing came up.
Dang it..my IV went bad, so they did another one..in my foot this time.
My g-tube site is very sore, red and tender to the touch....
I am still not going to the bathroom (stool) very well, and I really need to.
I am still getting sedation, but the amount has come down.
I am still on my antibiotics - both Zosyn and Vancomycin.
HOWEVER...They didn't mention anything about blood transfusion today since I'm doing so great!
We'll get this food thing figured out & be on our way home!!
Feeling so thankful!!
DAY OF LIFE 89
Big day again today because I started back on "drips" of food...literally, DRIPS OF FOOD.
My IV is still in since we are going very S-L-O-W-L-Y.
My g-tube site is still pretty tender & infected.
BUT..I only had 2 doses of Ativan sedation in 24 hours (huge reduction from every other day.)
They did more blood tests on me and my "hematocrit" is low (http://en.wikipedia.org/wiki/Hematocrit. They wanted to give me a blood transfusion, but my parents declined. My numbers are at the "HIGH" end of the "LOW" that they like to see and I am pretty pale. I have already had 1 blood transfusion and my parents don't want another one unless I ABSOLUTELY have to.
So, they are going to give me iron to see if this will help me.
Thankful for the faithful people who see me as well!!
DAY OF LIFE 88
Today is a better day..
I have no food in my belly and I feel SO MUCH BETTER!!
I am on antibiotic and I am getting "some" sedation, but not near the amount I was.
I am getting Zantac in my IV fluids and I am glad.
It is a better day FOR SURE!!
Grateful for this...
I have no food in my belly and I feel SO MUCH BETTER!!
I am on antibiotic and I am getting "some" sedation, but not near the amount I was.
I am getting Zantac in my IV fluids and I am glad.
It is a better day FOR SURE!!
Grateful for this...
DAY OF LIFE 85
Today I am down another 50 grams...
I am pretty archy and my g-tube is looking really red and swollen. It's kind of "seepy" and every time someone touches it, I cry.
They have increased my sedation AND my Tylenol and they have decided to add back in Zantac AND Prevacid too. They still think I am "refluxing" even thought it is not coming "up" and they want to try and neutralize my stomach acids and hopefully my belly will feel better.
My mommy doesn't like one bit that I am being sedated so much..she asks if this "may" be masking a real problem, but I should be okay now that I have the Nissen.
I am such a mystery and full of surprises.
I am not really going to the bathroom (stool) either which could be adding to my discomfort....
Thank you for all your support!!
I am pretty archy and my g-tube is looking really red and swollen. It's kind of "seepy" and every time someone touches it, I cry.
They have increased my sedation AND my Tylenol and they have decided to add back in Zantac AND Prevacid too. They still think I am "refluxing" even thought it is not coming "up" and they want to try and neutralize my stomach acids and hopefully my belly will feel better.
My mommy doesn't like one bit that I am being sedated so much..she asks if this "may" be masking a real problem, but I should be okay now that I have the Nissen.
I am such a mystery and full of surprises.
I am not really going to the bathroom (stool) either which could be adding to my discomfort....
Thank you for all your support!!
DAY OF LIFE 84
I am down 25 grams today, but they are going up on my food again.
I am still pretty uncomfortable, but I guess that's the nature of "stretching" my belly.
They don't really think that I have a "protein" milk allergy, so they have decided to "add" in a little of my mommy's milk to see "how" I react to it.
At least I am not "refluxing" OUT my nose and mouth anymore...that is a good thing...
Looking at the positive always helps...
I am still pretty uncomfortable, but I guess that's the nature of "stretching" my belly.
They don't really think that I have a "protein" milk allergy, so they have decided to "add" in a little of my mommy's milk to see "how" I react to it.
At least I am not "refluxing" OUT my nose and mouth anymore...that is a good thing...
Looking at the positive always helps...
DAY OF LIFE 83
Another day of increased food into my g-tube.
I am more archy and agitated today than I was yesterday, but they feel that it really has to do with my stomach being stretched.
I am off Fenanyl, but I am getting Ativan quite a bit...about every 4-5 hours...combine that with Tylenol and I'm in a happy land.
My mommy is afraid that I am going to be dependent on being sedated and "wonders" what is really wrong...
Maybe I am just in pain from the surgery still...
It's all a guess because as you guessed...I can't talk yet. (he he)
Keeping it light helps...
I am more archy and agitated today than I was yesterday, but they feel that it really has to do with my stomach being stretched.
I am off Fenanyl, but I am getting Ativan quite a bit...about every 4-5 hours...combine that with Tylenol and I'm in a happy land.
My mommy is afraid that I am going to be dependent on being sedated and "wonders" what is really wrong...
Maybe I am just in pain from the surgery still...
It's all a guess because as you guessed...I can't talk yet. (he he)
Keeping it light helps...
DAY OF LIFE 82
They are going up on my food again today.
I am starting to get a little "squirmy" but they say that it is because my belly is stretching and this hurts a little.
They have been giving me quite a bit of sedation to help me sleep "during" the stretching.
My mommy doesn't like me to be sedated, but she also doesn't like me to be in pain.
Catch 22..right?
Breathe and keep moving forward...
I am starting to get a little "squirmy" but they say that it is because my belly is stretching and this hurts a little.
They have been giving me quite a bit of sedation to help me sleep "during" the stretching.
My mommy doesn't like me to be sedated, but she also doesn't like me to be in pain.
Catch 22..right?
Breathe and keep moving forward...
DAY OF LIFE 81
YAHOO!!
What a great day for me...
I am doing so well that they are talking about "releasing" me to go home sometime NEXT WEEK!
I am OFF ALL Medication (including Diazoxide for my over active pancreas) & I LOOK LIKE A"Million Bucks" (not to mention I will "probably" will cost close to a "million bucks" too.)
My parents are so excited!!
Oh HAPPY DAY....Oh HAPPPYY DAAAYY..
What a great day for me...
I am doing so well that they are talking about "releasing" me to go home sometime NEXT WEEK!
I am OFF ALL Medication (including Diazoxide for my over active pancreas) & I LOOK LIKE A"Million Bucks" (not to mention I will "probably" will cost close to a "million bucks" too.)
My parents are so excited!!
Oh HAPPY DAY....Oh HAPPPYY DAAAYY..
DAY OF LIFE 80
What a GREAT DAY!!
NO MORE more reflux. I am seriously like a different child. I can now lay "flat" (instead of elevated) & sleep normally - without being woken up by reflux. It's amazing!!
I am NOT arching, squirming or crying..
My mommy is practicing "feeding" him through my tube too..and she finds it very interesting to "burp" me through a syringe (as I will have a harder time burping "normally" because of the Nissen.)
They are going to have the "eye" doctor come and check me for "retinopathy" because I have been on oxygen for so long.
You'll be glad to know...I DON'T have retinopathy!! YEA!!
Thankful..so thankful!!
What is Retinopathy?
http://en.wikipedia.org/wiki/Retinopathy
I am NOT arching, squirming or crying..
My mommy is practicing "feeding" him through my tube too..and she finds it very interesting to "burp" me through a syringe (as I will have a harder time burping "normally" because of the Nissen.)
They are going to have the "eye" doctor come and check me for "retinopathy" because I have been on oxygen for so long.
You'll be glad to know...I DON'T have retinopathy!! YEA!!
Thankful..so thankful!!
What is Retinopathy?
http://en.wikipedia.org/wiki/Retinopathy
DAY OF LIFE 79
My "new" IV went bad today, so the IV Team had to come and put in another one because I have to eat IV fluids until I can tolerate a full feeding volume in my belly.
4TH time was a charm. This hospital life HURTS!!
My eyes are "gooping" up today and I am still pretty cranky.
They are sedating me still and this does seem to help me.
They increased my food volume today and...so far so good..
"I think I can...I think I can..I know I can..I know I can..."
4TH time was a charm. This hospital life HURTS!!
My eyes are "gooping" up today and I am still pretty cranky.
They are sedating me still and this does seem to help me.
They increased my food volume today and...so far so good..
"I think I can...I think I can..I know I can..I know I can..."
DAY OF LIFE 78
I am on some pretty good sedation (Fentanyl & Ativan) still and I am pretty cranky. I am not refluxing anymore though, so they "think" my crankiness is from surgery pain, so they've added Tylenol too.
They are still checking my blood sugars and I am pretty stable.
I am eating on "TPN" (http://en.wikipedia.org/wiki/Parenteral_nutrition) but they started me on a SMALL dose of food into my new g-tube.
I haven't had "food" in my belly for a long time, so "stretching" my belly out will be a process and it may "hurt" a little.
It's okay..it's all going to be just great!!
They are still checking my blood sugars and I am pretty stable.
I am eating on "TPN" (http://en.wikipedia.org/wiki/Parenteral_nutrition) but they started me on a SMALL dose of food into my new g-tube.
I haven't had "food" in my belly for a long time, so "stretching" my belly out will be a process and it may "hurt" a little.
It's okay..it's all going to be just great!!
DAY OF LIFE 77
My daddy had to go home today and my mommy was sad, but she knew that I would go home soon too, so she is okay.
Such a blessing for us all!!
Such a blessing for us all!!
DAY OF LIFE 75
Today is Thursday and I am feeling pretty crummy.
I am on quite a bit of oxygen too.
I just can't seem to get "good" rest. It is loud here and every time I get to sleep, I get woken up by "nose" or by "reflux" or by someone "assessing" me.
My voice is totally gone and I am breathing really hard and fast...retracting A LOT. My airway is pretty swollen from all the reflux burn.
My mommy is having a hard day..it's hard to watch me AND she is with "strangers" in a "new" place with all new rules and procedures.
During "rounds" they stated that they had spoken with the surgeon's "office" (as he hasn't been able to reach the "actual" surgeon that came and spoke to my mommy on the first day I was here) and they "DO" want to do another upper GI test. This is the "same" test that I had done before at the other hospital. They also said that they wanted to pull "out" the roplogle tube that was "helping" me with my reflux.
My mommy doesn't hide her feelings very well, and they could tell that she was VERY upset.
She brought out all the stops on this one..she tried to do it as nicely as she could, but they knew she had "HAD" it. She asked them if they thought the other Doctors were not competent? Why did they have to do this same test over again. If they would just sit and "watch" me for an hour, they would "see" what everyone is saying is true. PLUS...she did NOT want that replogle tube pulled out as this was the ONLY thing that was keeping me from "aspirating" my own stomach acids. She asked the doctor "how many times" I had to throw-up out my nose and mouth before he would see that the replogle tube WAS needed?
She said that "if" the surgeon's "office" wanted another upper GI test, she wanted them to come up to my room..pull UP my previous test AND "show" her "what" they were looking for on the previous test that they did not see. It was NOT good enough for her to just put me through ANOTHER test that I have already have.
She was not happy AT ALL.
The "social" worker came by to "check" on her afterwards. I guess word travels fast when a mommy is as unhappy as mine was.
Within a few hours, the surgeon stopped by and said he would operate on me "tomorrow morning."
My mommy just cried..she felt such relief for me.
Also...one of my doctors from the other hospital made a special visit "into" the hospital to "check" on me. My mommy was SO HAPPY to see him too.
It was a day filled with A LOT of emotion, but it was all worth it.
My daddy is driving up to see me tonight to be with us for surgery tomorrow.
Good night!! It will be a better day tomorrow, I just know it!!
Wednesday, March 23, 2011
DAY OF LIFE 74
Today is Wednesday and my mommy learned really fast "how" things are done at this bigger hospital.
Today at the "daily rounds" they had a lot to talk about since I was "new" here...
I weighed: 2880 grams (6 pounds 3 ounces.)
I am still on much higher oxygen than I was.
I had to have Tylenol x 3 doses yesterday and through the night because I was so fussy.
They gave me Ativan sedation for my fussiness and my mommy didn't like it, but knew I needed rest, "somehow."
They had already "checked" me several times since I have been here because of my low glucose and they wanted "another" blood test (for my glucose levels) and I was still looking pretty pale so they would check my hematocrit numbers as well. (http://www.nlm.nih.gov/medlineplus/ency/article/003646.htm). At the other hospital, they were only checking my glucose 1x per week, but I was the "new" kid on the block, so they were being cautious.
They wanted to schedule an eye exam to check for Retinopathy on my eyes since they had to increase my oxygen... (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002585/)
They wanted to give me a shot called Synagis for RSV since I've had so many Respiratory Problems.
(http://pediatrics.about.com/od/rsv/a/1006_synagis.htm)
Today my mommy got a visit from an Ear, Nose & Throat Doctor (ENT.) They "assessed" me and wanted to get mommy's permission to do a "Rigid Brochoscopy" during surgery so they could "see" what is going on. If there is some "extra" floppy skin causing the noise I make when I breathe, then they asked to "clip" it out..She of course...agreed....anything to make me breathe BETTER!!
(http://www.google.com/imgres?imgurl=https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpainAAZVxtHe3q7xgIfSAbgH87eoC5OPhkbE8sP0TxFiLqTF9qnNArMenUDaQrNevbYqM10vP9u1dVN8s1olILgkMmSuSmjWvkEddHHKnZshrdSpR3CKzduVGmgF7QhkGTd-Ofv1xtSg/s1600/bronchoscopy.jpg&imgrefurl=http://movies-felixdanielmarshall.blogspot.com/2011/03/bronchoscopy.html&usg=__CYmoLM2L143DD6tMStNT3jEDHBc=&h=434&w=700&sz=30&hl=en&start=8&sig2=v5N4gqVuZEGg2l31Lls7HA&zoom=1&tbnid=cbGx7RzbjWlQ7M:&tbnh=94&tbnw=152&ei=iOKKTb6gNZK6sQP3sc2jCg&prev=/search%3Fq%3Drigid%2Bbronchoscopy%26hl%3Den%26sa%3DX%26rlz%3D1T4ACAW_enUS377US381%26biw%3D777%26bih%3D291%26tbm%3Disch&itbs=1&iact=rc&dur=344&oei=3eGKTamHE5O4sAP299mcCg&page=2&ndsp=9&ved=1t:429,r:0,s:8&tx=129&ty=79)
Endocrinology came in today to discuss some things with my mom and the main Doctor Neonatologist did as well. I am not sure "where" the mis-communication is, but my Doctor wasn't aware that the Surgeon had already talked to my mommy yesterday & he "left the decision up to my mommy & daddy" as to whether or not to do the surgery.
The main Neonatologist Doctor made it sound as though we would continue to do testing, to get the "proof" we need. I guess sometimes people "don't" communicate their conversations with each other, so the Doctor said he needed to get in touch with the surgeon to "get on the same page."
Well...I was having one of my "best" WORST "reflux" days..I was a refluxing machine and it was good for them to "see" what my life is like for me. They could obviously SEE that I was suffering..I am glad my mommy and daddy asked for me to be transferred. This will make the process easier and faster.
The geneticist came in today and he didn't have a whole lot "more" to tell us than what the original geneticist had found, but he did add some "humor" to the situation...he was funny...my mommy liked him.
He "explained" my situation like...BAKING A BATCH OF COOKIES. Let's say...my mommy decided to bake a batch of cookies and she "forgets" the salt (DELETION on chromosome #9) but when she "adds" the baking soda, she adds "double" the amount (DUPLICATION on chromosome #14.) She will still have cookie dough to bake, but they may taste a little "different."
Not necessarily "good," OR "bad,".....just "different." This is how he related to my situation.
Funny guy because afterwards he pointed to his "bald" head and said..."we all have chromosome issues..some are worse than others...I got the bald one." :) My mommy liked him and his analogy. Left her with a smile...
Today at the "daily rounds" they had a lot to talk about since I was "new" here...
I weighed: 2880 grams (6 pounds 3 ounces.)
I am still on much higher oxygen than I was.
I had to have Tylenol x 3 doses yesterday and through the night because I was so fussy.
They gave me Ativan sedation for my fussiness and my mommy didn't like it, but knew I needed rest, "somehow."
They had already "checked" me several times since I have been here because of my low glucose and they wanted "another" blood test (for my glucose levels) and I was still looking pretty pale so they would check my hematocrit numbers as well. (http://www.nlm.nih.gov/medlineplus/ency/article/003646.htm). At the other hospital, they were only checking my glucose 1x per week, but I was the "new" kid on the block, so they were being cautious.
They wanted to schedule an eye exam to check for Retinopathy on my eyes since they had to increase my oxygen... (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002585/)
They wanted to give me a shot called Synagis for RSV since I've had so many Respiratory Problems.
(http://pediatrics.about.com/od/rsv/a/1006_synagis.htm)
Today my mommy got a visit from an Ear, Nose & Throat Doctor (ENT.) They "assessed" me and wanted to get mommy's permission to do a "Rigid Brochoscopy" during surgery so they could "see" what is going on. If there is some "extra" floppy skin causing the noise I make when I breathe, then they asked to "clip" it out..She of course...agreed....anything to make me breathe BETTER!!
(http://www.google.com/imgres?imgurl=https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpainAAZVxtHe3q7xgIfSAbgH87eoC5OPhkbE8sP0TxFiLqTF9qnNArMenUDaQrNevbYqM10vP9u1dVN8s1olILgkMmSuSmjWvkEddHHKnZshrdSpR3CKzduVGmgF7QhkGTd-Ofv1xtSg/s1600/bronchoscopy.jpg&imgrefurl=http://movies-felixdanielmarshall.blogspot.com/2011/03/bronchoscopy.html&usg=__CYmoLM2L143DD6tMStNT3jEDHBc=&h=434&w=700&sz=30&hl=en&start=8&sig2=v5N4gqVuZEGg2l31Lls7HA&zoom=1&tbnid=cbGx7RzbjWlQ7M:&tbnh=94&tbnw=152&ei=iOKKTb6gNZK6sQP3sc2jCg&prev=/search%3Fq%3Drigid%2Bbronchoscopy%26hl%3Den%26sa%3DX%26rlz%3D1T4ACAW_enUS377US381%26biw%3D777%26bih%3D291%26tbm%3Disch&itbs=1&iact=rc&dur=344&oei=3eGKTamHE5O4sAP299mcCg&page=2&ndsp=9&ved=1t:429,r:0,s:8&tx=129&ty=79)
Endocrinology came in today to discuss some things with my mom and the main Doctor Neonatologist did as well. I am not sure "where" the mis-communication is, but my Doctor wasn't aware that the Surgeon had already talked to my mommy yesterday & he "left the decision up to my mommy & daddy" as to whether or not to do the surgery.
The main Neonatologist Doctor made it sound as though we would continue to do testing, to get the "proof" we need. I guess sometimes people "don't" communicate their conversations with each other, so the Doctor said he needed to get in touch with the surgeon to "get on the same page."
Well...I was having one of my "best" WORST "reflux" days..I was a refluxing machine and it was good for them to "see" what my life is like for me. They could obviously SEE that I was suffering..I am glad my mommy and daddy asked for me to be transferred. This will make the process easier and faster.
The geneticist came in today and he didn't have a whole lot "more" to tell us than what the original geneticist had found, but he did add some "humor" to the situation...he was funny...my mommy liked him.
He "explained" my situation like...BAKING A BATCH OF COOKIES. Let's say...my mommy decided to bake a batch of cookies and she "forgets" the salt (DELETION on chromosome #9) but when she "adds" the baking soda, she adds "double" the amount (DUPLICATION on chromosome #14.) She will still have cookie dough to bake, but they may taste a little "different."
Not necessarily "good," OR "bad,".....just "different." This is how he related to my situation.
Funny guy because afterwards he pointed to his "bald" head and said..."we all have chromosome issues..some are worse than others...I got the bald one." :) My mommy liked him and his analogy. Left her with a smile...
DAY OF LIFE 73
Today is my big day and my mommy will be coming with me!!
I was supposed to leave at 7:00 am this morning, but there was an "emergency" ahead of me, so we didn't actually leave until 11:00 am.
It was a little crazy as everyone was running around trying to get me ready to go. There is a lot of preparatory work to transport a baby.
I am still looking pretty pale, I have an oxygen cannula, a replogle tube and NJ feeding tube in.
My mommy is really nervous and will really miss the support of my daddy and Nana, all my Doctors and Nurses and "home" in general.
BUT...this is what we need to do to get "me" home with them, so here we go!!
I got to go "outside" for the first time today and I really liked the ride. I liked the sunshine too!!
I went for a ride "in" an ambulance...then "in" an airplane...then "in" another ambulance and finally arrived at the bigger hospital.
My mommy couldn't go "in" with me for awhile and I was scared.
From the minute I arrived here, I had SO MANY PEOPLE poking me, blood draws, prodding me (and all my parts - including my "boy" parts) OVER AND OVER AND OVER. They call it "assessing" me because they needed to "find out" what my baseline was for themselves.
My mommy knew that this was a way bigger hospital and there would be a lot of people, but I am not used to all the noise and all the "assessments" and I didn't like it AT ALL.
I cried a lot and the more I cried, the more hoarse I got AND my airway sounded more and more blocked. My oxygen had to go "up" alot...and who knows "exactly" why I needed more..it could have been for a lot of reasons (change in elevation OR stress.)
My mommy came in with me just as soon as she could and she began to "tell my story." She told them about "me" and about what I "like" and what I "don't" like.
She told them about ALL the other tests I have had done and why they should only "suction" me out as a LAST resort.
She watched me like a hawk and felt really overwhelmed because of all the people that she met and kept meeting on my first day..these were all brand new people and it was really hectic.
The Neonatologist. The Resident. The Nurse Practitioner. The Registered Nurse. The Respiratory Therapist. The Respiratory Therapist Student. The Surgeon. The Resident Surgeon(s.) The Lactation Specialist. The Social Worker. The Parent Resource Worker. Plus all the other people that my mommy had to sign paperwork with.
My mommy was amazed at all the people that she had the opportunity to talk with on our FIRST day! She was also very encouraged because the Neonatologist was a very kind Doctor AND the Surgeon came and said that he would "prefer" to wait on the surgery until I was "older" and weighed more. This is a surgery that they don't take lightly, and who knows...I may "grow out" of my reflux if I am given enough time. He told my mommy all the pro's and con's but in the end said: "I've reviewed your son's file and if you came here for a surgery, I will perform it. I want you to think it over and talk with your husband about it and let me know." My mommy asked about any additional "testing" and he said that he doesn't feel that any are necessary (YEA!!) Then my mommy asked about "when" it could be done and he said: "as soon as a couple of days as soon as you for sure decide this is the direction you want to go."
My mommy wanted to have time to talk with my daddy about all the "information" that the surgeon gave her AND have one more opportunity to talk with the Geneticist (tomorrow) to make sure he couldn't provide any "new" information on kids like me that may point to "feeding" issues, "reflux" or "aspiration pneumonia." They just wanted to BE SURE that they had all the facts before they said "yes"..for sure.
It was a L-O-N-G day and I was worn out...so was my mommy...but it was a REALLY PRODUCTIVE DAY!! Feeling like we made a great decision!!
I was supposed to leave at 7:00 am this morning, but there was an "emergency" ahead of me, so we didn't actually leave until 11:00 am.
It was a little crazy as everyone was running around trying to get me ready to go. There is a lot of preparatory work to transport a baby.
I am still looking pretty pale, I have an oxygen cannula, a replogle tube and NJ feeding tube in.
My mommy is really nervous and will really miss the support of my daddy and Nana, all my Doctors and Nurses and "home" in general.
BUT...this is what we need to do to get "me" home with them, so here we go!!
I got to go "outside" for the first time today and I really liked the ride. I liked the sunshine too!!
I went for a ride "in" an ambulance...then "in" an airplane...then "in" another ambulance and finally arrived at the bigger hospital.
My mommy couldn't go "in" with me for awhile and I was scared.
From the minute I arrived here, I had SO MANY PEOPLE poking me, blood draws, prodding me (and all my parts - including my "boy" parts) OVER AND OVER AND OVER. They call it "assessing" me because they needed to "find out" what my baseline was for themselves.
My mommy knew that this was a way bigger hospital and there would be a lot of people, but I am not used to all the noise and all the "assessments" and I didn't like it AT ALL.
I cried a lot and the more I cried, the more hoarse I got AND my airway sounded more and more blocked. My oxygen had to go "up" alot...and who knows "exactly" why I needed more..it could have been for a lot of reasons (change in elevation OR stress.)
My mommy came in with me just as soon as she could and she began to "tell my story." She told them about "me" and about what I "like" and what I "don't" like.
She told them about ALL the other tests I have had done and why they should only "suction" me out as a LAST resort.
She watched me like a hawk and felt really overwhelmed because of all the people that she met and kept meeting on my first day..these were all brand new people and it was really hectic.
The Neonatologist. The Resident. The Nurse Practitioner. The Registered Nurse. The Respiratory Therapist. The Respiratory Therapist Student. The Surgeon. The Resident Surgeon(s.) The Lactation Specialist. The Social Worker. The Parent Resource Worker. Plus all the other people that my mommy had to sign paperwork with.
My mommy was amazed at all the people that she had the opportunity to talk with on our FIRST day! She was also very encouraged because the Neonatologist was a very kind Doctor AND the Surgeon came and said that he would "prefer" to wait on the surgery until I was "older" and weighed more. This is a surgery that they don't take lightly, and who knows...I may "grow out" of my reflux if I am given enough time. He told my mommy all the pro's and con's but in the end said: "I've reviewed your son's file and if you came here for a surgery, I will perform it. I want you to think it over and talk with your husband about it and let me know." My mommy asked about any additional "testing" and he said that he doesn't feel that any are necessary (YEA!!) Then my mommy asked about "when" it could be done and he said: "as soon as a couple of days as soon as you for sure decide this is the direction you want to go."
My mommy wanted to have time to talk with my daddy about all the "information" that the surgeon gave her AND have one more opportunity to talk with the Geneticist (tomorrow) to make sure he couldn't provide any "new" information on kids like me that may point to "feeding" issues, "reflux" or "aspiration pneumonia." They just wanted to BE SURE that they had all the facts before they said "yes"..for sure.
It was a L-O-N-G day and I was worn out...so was my mommy...but it was a REALLY PRODUCTIVE DAY!! Feeling like we made a great decision!!
Tuesday, March 22, 2011
DAY OF LIFE 72
Happy Valentines Day!!
I am still on a nasal cannula oxygen and I still have the replogle tube sucking out my reflux for me.
I like it when people are very reasonable (so do my parents.) What a great doctor!!
I am still on a nasal cannula oxygen and I still have the replogle tube sucking out my reflux for me.
I like it when people are very reasonable (so do my parents.) What a great doctor!!
DAY OF LIFE 71
Today is Sunday and I am resting..
I am still refluxing and it is hard to get sleep.
The most comfortable position I can find is arched back as far as I can get.
I will be glad when someone can help me and we will find out more tomorrow.
I am still pretty pale, but my numbers are remaining stable.
Keeping the faith!!
I am still refluxing and it is hard to get sleep.
The most comfortable position I can find is arched back as far as I can get.
I will be glad when someone can help me and we will find out more tomorrow.
I am still pretty pale, but my numbers are remaining stable.
Keeping the faith!!
DAY OF LIFE 67
This darned reflux is hurting me so badly.
I just can't get it to stop.
My mommy and Nana are still not able to see me, but they are getting better.
I am just so glad that my daddy can be here with me because I had another hard day.
What a great daddy!!
I just can't get it to stop.
My mommy and Nana are still not able to see me, but they are getting better.
I am just so glad that my daddy can be here with me because I had another hard day.
What a great daddy!!
DAY OF LIFE 65
Daddy is with me again today.
I sure love all this time I am getting with him.
We talk about all sorts of things.
My mommy and Nana are still not feeling well, so I haven't seen them in a few days.
I am sounding so great & I am off all my sedation, but they gave me some Tylenol.
My lungs are getting more clear and I am not making hardly any noise when I breathe!!
My parents agreed to my shots today (Hep b, DTaP, Hib, IPV (Polio) and PCV (Pneumococcal.)
OUCH...OUCH...OUCH..
I guess I should be "used" to all these needles, but I am not.
But..I am doing so well that they are going to try me off my oxygen today...
Feeling better everyday...
I sure love all this time I am getting with him.
We talk about all sorts of things.
My mommy and Nana are still not feeling well, so I haven't seen them in a few days.
I am sounding so great & I am off all my sedation, but they gave me some Tylenol.
My lungs are getting more clear and I am not making hardly any noise when I breathe!!
My parents agreed to my shots today (Hep b, DTaP, Hib, IPV (Polio) and PCV (Pneumococcal.)
OUCH...OUCH...OUCH..
I guess I should be "used" to all these needles, but I am not.
But..I am doing so well that they are going to try me off my oxygen today...
Feeling better everyday...
DAY OF LIFE 64
Another day with daddy!!
They want to give me a few more days to let the "swelling" go "down" and then we will be making a "eating" plan.
They want to do another scope when the swelling is down, just to be "sure." At my last scope, I was just so swollen it was hard to get an accurate picture of "what" I will FOR SURE do.
They keep talking about a surgery, but mommy and daddy don't want to allow a surgery unless they have made TOTALLY sure there is no other option for me.
I have only had 1 dose of Ativan today and 2 doses of Tylenol.
Keeping the faith of wellness!!
They want to give me a few more days to let the "swelling" go "down" and then we will be making a "eating" plan.
They want to do another scope when the swelling is down, just to be "sure." At my last scope, I was just so swollen it was hard to get an accurate picture of "what" I will FOR SURE do.
They keep talking about a surgery, but mommy and daddy don't want to allow a surgery unless they have made TOTALLY sure there is no other option for me.
I have only had 1 dose of Ativan today and 2 doses of Tylenol.
Keeping the faith of wellness!!
DAY OF LIFE 63
R & R with my daddy today!!
Sounding less "junky" today when I breathe.
I got 2 doses of Ativan and 4 doses of Tylenol.
Mommy and Nana are going stir crazy at home because they can't come see me for themselves..but they are getting some good time with my brother and sister.
That is a good thing...a very good thing...
Sounding less "junky" today when I breathe.
I got 2 doses of Ativan and 4 doses of Tylenol.
Mommy and Nana are going stir crazy at home because they can't come see me for themselves..but they are getting some good time with my brother and sister.
That is a good thing...a very good thing...
DAY OF LIFE 62
Another day of rest..
Sounding a "little" better, but still making noise when I breathe.
My daddy is so awesome..he comes and holds me for as long as he can during the day AND at night too!!
It's just us...total "BOY" time..it's great!!
Mommy and Nana are still sick. I miss them.
They will be back soon though...I just know it!!
Sounding a "little" better, but still making noise when I breathe.
My daddy is so awesome..he comes and holds me for as long as he can during the day AND at night too!!
It's just us...total "BOY" time..it's great!!
Mommy and Nana are still sick. I miss them.
They will be back soon though...I just know it!!
DAY OF LIFE 61
Today is a day of total rest.
I still sound kind of "junky" and "croupy" from my pneumonia.
My daddy is in visiting me because my mommy and Nana caught another cold.
I think the stress of this is really getting to my mommy and she just keeps getting sick.
It's probably better that they don't come see me right now because I can't afford to get sick again.
I'm pretty fragile, BUT I AM STRONG...
Thankful for all my friends and family and their strong faith for me...
I still sound kind of "junky" and "croupy" from my pneumonia.
My daddy is in visiting me because my mommy and Nana caught another cold.
I think the stress of this is really getting to my mommy and she just keeps getting sick.
It's probably better that they don't come see me right now because I can't afford to get sick again.
I'm pretty fragile, BUT I AM STRONG...
Thankful for all my friends and family and their strong faith for me...
Monday, March 21, 2011
DAY OF LIFE 59
I am all smiles today as I continue to get "hits" of my HAPPY MEDICINE.
Sedation and a binky cut down so I can still "suck" it with all of my tubes in, make me a HAPPY BOY!!
I have really good Nurses who take such great care of me.
My parents are really looking forward to tomorrow. It's hard for them to look past all the tubes, iv's, "prick" holes and bruises on my body, but they hope to have some answers FINALLY and they are excited to get this breathing machine OUT...as am I.
It is a day of thanksgiving for sure..
Sedation and a binky cut down so I can still "suck" it with all of my tubes in, make me a HAPPY BOY!!
I have really good Nurses who take such great care of me.
My parents are really looking forward to tomorrow. It's hard for them to look past all the tubes, iv's, "prick" holes and bruises on my body, but they hope to have some answers FINALLY and they are excited to get this breathing machine OUT...as am I.
It is a day of thanksgiving for sure..
DAY OF LIFE 58
Well...the results are in..
"Pseudomonas" AGAIN? (UGH!)
The "THEORY": My sphincter muscle is "weak" (maybe from being premature OR maybe from my chromosomal translocation - who really knows.
But...my weak sphincter muscles let's me "reflux" because there isn't something "strong" to hold anything "down" in its place.
Reflux caused "stomach acid" aspiration in my lungs (again), fried esophagus (again), pneumonia (again) which "triggered" pseudomonas (again.)
I am still on the breathing machine & continually getting sedated as I'm trying really hard to "extubate" myself "early."
THE PLAN: Extubation in 2 days and a nose scope/swallow study right afterwards.
Whew...this is just plain crazy..
I think my parents feel like they are on the movie "Groundhog Day."
They have to keep remaining positive though because they don't like the alternative of NOT being..
"Pseudomonas" AGAIN? (UGH!)
The "THEORY": My sphincter muscle is "weak" (maybe from being premature OR maybe from my chromosomal translocation - who really knows.
But...my weak sphincter muscles let's me "reflux" because there isn't something "strong" to hold anything "down" in its place.
Reflux caused "stomach acid" aspiration in my lungs (again), fried esophagus (again), pneumonia (again) which "triggered" pseudomonas (again.)
I am still on the breathing machine & continually getting sedated as I'm trying really hard to "extubate" myself "early."
THE PLAN: Extubation in 2 days and a nose scope/swallow study right afterwards.
Whew...this is just plain crazy..
I think my parents feel like they are on the movie "Groundhog Day."
They have to keep remaining positive though because they don't like the alternative of NOT being..
DAY OF LIFE 57
Today is my ORIGINAL due date...
Happy Sort of Birthday to me!!
I am feeling much better.
I am still on a breathing machine, but I am AWAKE and I have color back in my face.
Whew!! I am full of scary surprises and my parents are on a crazy ride with me.
Hang on everyone!!
Happy Sort of Birthday to me!!
I am feeling much better.
I am still on a breathing machine, but I am AWAKE and I have color back in my face.
Whew!! I am full of scary surprises and my parents are on a crazy ride with me.
Hang on everyone!!
DAY OF LIFE 54
I am getting bigger and I know that these tubes are NOT a part of my body, so in order to keep me very still (because it's not good for me to move around with a breathing machine in me) they have to sedate me.
It's a great day of REST.
My mommy was able to hold me but only for a little while. It's really hard for me to get comfortable because it kind of hurts when I get taken "out" and put back "in" my bed because the breathing machine "moves" in me - OUCH. It also really makes my mommy cringe when they have to "suction" out my tube so I can breathe.
My daddy came to see me, but left me in my incubator so I would be more comfortable. When I am like this, it is better to NOT hold me.
I just need my sleep..and that's good stuff!!
It's a great day of REST.
My mommy was able to hold me but only for a little while. It's really hard for me to get comfortable because it kind of hurts when I get taken "out" and put back "in" my bed because the breathing machine "moves" in me - OUCH. It also really makes my mommy cringe when they have to "suction" out my tube so I can breathe.
My daddy came to see me, but left me in my incubator so I would be more comfortable. When I am like this, it is better to NOT hold me.
I just need my sleep..and that's good stuff!!
DAY OF LIFE 53
Well folks, I had kind of a rough day..
Before I start, I just have to say that I have THE best Doctors and Nurses EVER!!
I am having a really hard time breathing. My airway is just to small to have "swelling" in it. The "air" is having a hard time getting in. I am retracting really hard and breathing super hard and fast.
My Nurse gave me a mask with some steroids today and it "helped" with the swelling just a little, but I am still working hard.
My Doctor came in and just "watched" me for a good 30 minutes or so, not really saying a whole lot. Afterwards, all he had to do was look at my mommy and Nana and they knew what he was thinking.
He was thinking that I am working WAY too hard to breathe and if I keep going at this pace, I will tire myself out in the middle of the night and then we will be in an emergency situation. My mommy didn't like the thought of a breathing machine again, but knew that it really was for the best.
So to "beat" an emergency situation, we decided it would be best to insert the breathing machine in me again and give me a rest. OUCH...OUCH...OUCH. This is NOT a fun process and I am not a real easy "intubation" because of my small airway formation. Thankfully they sedated me and thankfully my mommy and Nana didn't stay and watch.
It's been a tough few days for me. Pneumonia in lungs, 3 iv's, replacement of feeding tube into intestines AGAIN, reflux & ALL the antibiotics/medications have worn me out.
I'm going to sleep now...
Keeping the faith of wellness...
Before I start, I just have to say that I have THE best Doctors and Nurses EVER!!
I am having a really hard time breathing. My airway is just to small to have "swelling" in it. The "air" is having a hard time getting in. I am retracting really hard and breathing super hard and fast.
My Nurse gave me a mask with some steroids today and it "helped" with the swelling just a little, but I am still working hard.
My Doctor came in and just "watched" me for a good 30 minutes or so, not really saying a whole lot. Afterwards, all he had to do was look at my mommy and Nana and they knew what he was thinking.
He was thinking that I am working WAY too hard to breathe and if I keep going at this pace, I will tire myself out in the middle of the night and then we will be in an emergency situation. My mommy didn't like the thought of a breathing machine again, but knew that it really was for the best.
So to "beat" an emergency situation, we decided it would be best to insert the breathing machine in me again and give me a rest. OUCH...OUCH...OUCH. This is NOT a fun process and I am not a real easy "intubation" because of my small airway formation. Thankfully they sedated me and thankfully my mommy and Nana didn't stay and watch.
It's been a tough few days for me. Pneumonia in lungs, 3 iv's, replacement of feeding tube into intestines AGAIN, reflux & ALL the antibiotics/medications have worn me out.
I'm going to sleep now...
Keeping the faith of wellness...
DAY OF LIFE 52
Wow...after all of yesterday's craziness, I need sleep.
My airway is pretty swollen and sore and I am working pretty hard to breathe, but I am doing WAY better than I was yesterday.
I know that we "caught" this before it got too bad this time and "rest" will be the key for me.
Talk about a roller coaster for my family...I am full of surprises.
Today the Doctor had the "talk" with my parents. He said that he had to tell them that if at any point they felt like "enough was enough" with all of the medical testing and treatment and they wanted to say "stop, withdraw medical treatment" and just "take me home" then that was their "right." Both my mommy and daddy said that this was not an option for our family. We would continue forward to getting me better.
That was a hard talk for them to hear.
PS....I decided to pull OUT my NJ tube..it was kind of coming lose anyway, so I thought I would help it "out." (I am getting "smarter" by the day, and I know that I don't like having tubes on my face.) :)
Keep rolling forward..every single day...
My airway is pretty swollen and sore and I am working pretty hard to breathe, but I am doing WAY better than I was yesterday.
I know that we "caught" this before it got too bad this time and "rest" will be the key for me.
Talk about a roller coaster for my family...I am full of surprises.
Today the Doctor had the "talk" with my parents. He said that he had to tell them that if at any point they felt like "enough was enough" with all of the medical testing and treatment and they wanted to say "stop, withdraw medical treatment" and just "take me home" then that was their "right." Both my mommy and daddy said that this was not an option for our family. We would continue forward to getting me better.
That was a hard talk for them to hear.
PS....I decided to pull OUT my NJ tube..it was kind of coming lose anyway, so I thought I would help it "out." (I am getting "smarter" by the day, and I know that I don't like having tubes on my face.) :)
Keep rolling forward..every single day...
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