Alexander Reyes

TrachKid Profile

smily alex.jpg

Hi, my name is Nellie I am Alexander's mom. Here is my son's story, Baby Alexander was born on December 16, 2008 at 5:05pm. He was a healthy little boy until 2 weeks later he caught a cold. So that morning I took him to his pediatrition, and he gave him Xopenex and Benedryl. I still dont know if it was the right thing to do to give a 2 week old benedryl. Well after the first dosage of Benedryl after 1 hour Alexander stoped breathing, it was the worst experience ever. When we got to the emergency room, he was intubaded,and the drs said he had a benedryl over dosage and bronculites non RSV after being intubaded for three times in 1 week and 1/2, we got to go to the floor. And after 2 weeks we got to go home. Later that week we were readmitted to the hospital for trachomalacia and droping sats. They found out my son had subglottic synosis. He requierd laserd surgery to remove some scare tissue that was blocking his airway. Finally after being in the hospital for 2 weeks we got to go home. We made home for a month we were really happy. But Guess what, on March 16, 09 i got up and went to get some breakfast , when i saw my baby he was retracting and look pail. S we came to the ER, his Oxygen was 86 when we came in,and also RSV POSSITIVE, but you know one thing that makes me stronger, that even thought my son is havin a hard time to take a breath he still smiles. He is My ALEXANDER THE WARRIOR!! As of that day we are still here in the hospital, he was intubaded for 3 weeks and also paralyzed that caused his trachea to shrink, so no air could pass through . Then they desided he needed a trach and he got his trach put in on April 6, 2009. As of today April 21, 2009 we had already made for a week in the main floor but alexander just took a turn and we are back in the PICU, and on the vent. Hopefully someone who reads this and has had the expirence with a kid with a trach can email me and tell me what life is like. Please do, I also have a 22 month old and I don't know how Its going to be at home. My email add. is rafael.reyes12@yahoo.com Please tell what its like Im New at this.

History

Blog
View recent blog entries
Member for
46 weeks 4 days

Location

Country
United States
State/Province
Tennessee

My Blog

First Steps

9 January 2010 - 8:50pm — nellie

Hi, everyone
                        Here is an update of alexander. HE is no taking his first steps. Something I never imagined that was going to happend. Now I know I was wrong. I am so thankfull with god, that he is giving alex the chance to walk and live like any other child his age. He is a very happy lil boy. He enjoys eating, As you know he is tube feed, but he was approved to eat baby food, so he sits with us in the table and he eats with us. He loves Smashed Potatoes with gravy. The doctor put him on a diet because he is now over weight. He should be at 50% and he is at 90% so he needs to come down to 50%. He is now getting into the kitchen cabinets, now I had to buy the little things that stick to the plug ins socket. But Im so glad that he can do the thing he does. All I can say is that Thank you jesus for giving us the oppurtunity to be with our child.
THANKS FOR READING.

EXTRAORDINARY MEASURE JANUARY 22, 2010

28 December 2009 - 9:04pm — nellie

HI, everyone
    This is alexanders mom. Just wanted everyone to know that if you have time look up this movie. In this movie there will be kids with tracheostomy's and health issues going on. Its about a parent trying to save his kids life.
    Alex is doing better with his rsv. If anyone know how to change trach ties on an active baby please let me know. Alex pulled on his trach on chirstmas eve. I had givin him a bath and as soon as I was changeing his trach ties he turn are his trach slipt out. It was so scary but the thing is he was breathing fine, Thanfuly we did'nt have to call an abulance. His CRawling ...... YEY!!!
 Gota go take care everyone...

Tested + for RSV and having Apneas

26 December 2009 - 2:47pm — nellie

Hi, everyone
          I just wanted to update yall. Alexander had been in the ICU durning his bday, and they had done a trach culture, as you know a trach culutre takes some days to grow bactiria or other stuff. Well alexander tested possitive for RSV. We are unable to take him outside because of this.So he is so tierd of being home. He is so used to going out. Its better safe than sorry. He is also having apneas. And the dr has no idea why he is now doing this. He had never done it before. He sats fine when ever he has an apnea his heart comes down to the low 70 But his O2 are higher than 95 So i dont know whats happeing. The dr had gone up on his pressure support to 17 he had begun with 12 then 17 and now 14 so I dont know if might be because of his pressue support not being at 12 anymore. Does anyone have any ideas of what might it be? Please let me know
                                                                        Thanks
Alexanders mommy 

My #1 Birthday and in the ICU

16 December 2009 - 5:33pm — nellie

Hi,
Today is alexanders 1 bday. well unfortunantely alex spent the last few days in the icu. He is growing (sudamonus) , He has ATALECTISIS in his right lower lung and he is on steroids for the sweeling of the lung. Well now i have to go to venderbilt to look for his meds. because no other pharmacy had it. Iv looked for it but its no where to be found. So now im here in the vanderbilts pharmacy i have to wait a hour for his meds to be ready for alex, Hopefully by christmas he will be filling better. WEll i have to go take care every one ...
                           MERRY CHRISTMAS,AND HAPPY NEW YEAR!!!2010

Doing well after surgery... but..

28 November 2009 - 3:51pm — nellie

hi, everyone
 This is alexanders mom. To everyone out there a NISSEN FONDOPLICATION LAPROSCOPICLY IS AWESOME!!!!!!!
Alexander recoverd quickly but now he has an infection in his lungs he is taking an antibiotic. We still dont know what it is but they are testing a culture. i will up load new pic...
   bye thanks

more

Contact Us

Yahoo: 
rafael.reyes12@yahoo.com

My Links

Just here

Topics I've Participated In

TitlePosterRepliesUpdated
Aspiration Pneumonia due to acid reflux Jaydens mommy21 week 17 hours ago
Tested + for RSV and having Apneas nellie14 weeks 1 day ago
First Steps nellie25 weeks 5 days ago
EXTRAORDINARY MEASURE JANUARY 22, 2010 nellie25 weeks 5 days ago
My #1 Birthday and in the ICU nellie35 weeks 5 days ago

Guestbook

24 April 2009 - 10:12am — Garrett

Hi Nellie, this is a good

Hi Nellie, this is a good site - glad you found it!  I would recommend that you join babycenter.com too.  When you get there go to communities, groups and join the tracheostomy mommies group.  I've found a lot of people in that group helpful too.  Life with a trach is hard, but good.  I don't have to worry if my little man is breathing - I can sleep at night!  I'm glad you are trying to find support right away - I just started and my son has had his trach for about five months now - I should have done it earlier!  It is scary at first, so I think it's great to know some other people going through the same thing as you.  Good luck!  Melissa
 

28 July 2009 - 10:56pm — nanaof3luvsjc

Help

My son had a trache for 3 and 1/2 years and was just recently decannuated. I have a group page on facebook called angels with tracheostomy tubes or traches. There are some diccussions on there that might be helpful. I also have a page here for my son Dylan so check it out. http://www.facebook.com/home.php#/group.php?gid=137793905421&ref=ts

15 January 2010 - 12:26am — Leoangel

Thanks

Hi. You baby is very cute too. Wel after I had my baby, life being so hard . As I said in the profile, we were in a rehab hospital but, 2 weeks before going home the baby got the flu. Now we are back in the ICU unit. She is very sick and her body is not fighting the flu. She got the flu a month ago and still has it. We are praying to God that she get well very soon. Take care of it little one and do not let too much people to hold him. Our babies are very sensitive.