Jonathon Tubbs
TrachKid Profile
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I have a son his name is Jonathon he is 31 months old and weighs 6 pounds. He was born at 35 weeks due to placenta rupture, he went 45 minutes with out blood or oxygen to the brain. Now he suffers from hypoxic-ischmic (brain damaged) and cerebral palsy, failure to thrive, low temp grade, (hypothermia) skull over lap, brain shrinkage, and now a trach this was placed the 9th in order for him to gain weight. When he breaths he looses calories, now with the trach he can rest and not struggle so much. He also has stridor and a floppy air way. My dad has a trach, has had it now for many many years, but now this is my son and I am kinds nervous, etc. He is home now, he was in from Nov. 13 until Dec. 15 and Jan. 9 until Jan. 11. So, we are usually always being in hospitals. The suctioning is kind of hard, just because I'm scared that I will hurt him, and changing the ties is not comfortable to him. He is a small baby at almost 3 and has a lot of pain all the time. So, he is not a easy child to tend too. He has the apnea monitor and O2 and the artificial nose and the trach vent and air compressor, etc. I would love to speak with other parents who can give me tips and talk. This is all new even though I grew up with my dad having this, I am clueless. Email me anytime please and thank you.
Update Jan 21, 2001 - The trach so far has been great no problems, suctioning and cleaning it like the g-tube is beginning to be so far easy.
As we were lying here last night in bed, my husband had Jonathon laying on his chest, something Jonathon has not done in months. Well next thing I know I looked up and there it was the trach was out. Unlike his g-tube--we just get another and put it back in--but this trach is all so new. My husband is the patience one and he tried, but Jonathon kept crying and my husband could not get it in. He would have if I didn't get all nervous and said lets go! So we drove to the E.R. and I went in and they laid him down and they were done that quick. I should have let my husband do it , but with it being 13 days old, I thought maybe he was not going to get it back in (that's a mother for ya). We came home and all was better gave him his pain meds and slept all night. I'm sure there is going to be more like this in the future...
Update March 2001 - It has almost been 3 months and still no progress. He got up to 9 pounds in January, the most he has ever been. Now he is back down to 6 pounds and 7 oz's. On his third birthday in June this year, if he has not gained any by then we are taking it out. This was the worst experience I have ever been threw, There was only a 50% chance he would gain with this anyway, but we did it because we are out off things to do for him. But, now I realize he is not gonna grow. There is nothing more they can do for Jonathon. I don't want to take it out for that fact of his stridor and etc., but they said if he ain't growing it's, my choice. I'm just afraid I'm gonna hurt him more by taking it out. Any suggestions email me anytime.
Update April 2001 - Jonathan went back in the hospital April 16th with acid into the blood stream, dehydration, sodium was 125, sugar was 320 and potassium was very high. He is home now as of sat April 21st. They gave him IV fluids and antibiotics. He stayed in the NICU until the day before his d/c. They thought he had juvenile diabetes. Thank God right now the test are negative. At first they were positive and they were going to start IV insulin, and then when they did another test his sugar was 120 and his urine looked good. That's always a good sign. We go back Tuesday to do more test to check them again. Thanks for visiting......
Update June 22, 2001 - Jonathon turned 3 years old weighing in at 6 pounds and 13 ounces and 25 inches long. Every thing so far has been ok with the trach besides a lot of secretion and redness around the site. Since we got the trach in order to help Jonathon grow and it has not we are taking it out next week. He will go in and have it stitched from the inside out and then bandaged up. I don't know if we are doing the right thing or not by doing this. I would like to talk with some one if there child has been through this with the trach being removed you can email me at sherrytubbs@aol.com or sherrys4kids@aol.com
Update July, 2001 - We went to the doctor's office like planned 6 months ago in Jan like they said to take the trach out if he did not grow. Well he has not grown at all, he is still 9 lbs, so really nothing. He just turned 3 yrs old. Well after the 30 minute drive there and after setting all day waiting for us to go back, we finally got back there just to get my feelings hurt. The doctor said I his mother would be making a big mistake if I did. He would not make it own his own with out the trach, he couldn't and can not breath alone anymore. That's ok but what hurt me is I have not heard him cry for months, that's all I really want is to hear that again. They said if I was to take it out I would find him not breathing, that hurts to hear that. Well after a long time crying and trying to get over it, its going to stay in for sure but now its for the rest of his life, that hurts. They say he will get his cry back but its been 6 very long months and nothing yet. That's something I miss so much.
Update October 2001 - Jonathon Nathaniel is now 40 months old and is at 7 pounds and 2 ozs everything is about the same really no changes. He got his RSV and flu shot last week, earlier than last year, so hopefully it will kick in and do its job... We had to shave him bold due to skin break down in the back on the neckties. It healed pretty fast, now we are down to making our own trach ties. The one they give you and extra special ones you can get from a Dr's referral just isn't helping...
Update December 2001 - AS OF 12/12/01 HE IS NOW 8 POUNDS EVEN. THAT IS THE BEST NEWS WE HAVE HEARD IN AWHLE. HE HAS STOPPED WEARING THE TRACH TIES AND NOW IS WEARNG THE BEAD CHAINS THAT I FOUND ON AARON'S PAGE, SO I WOULD LIKE TO THANK AARON'S PAGE FOR THAT. THEY ARE DOING GREAT THE CHAIN IS LIGHT AND NOW HE WONT HAVE MANY SKIN BREAKDOWNS WE ARE HAPPY TO GET THOSE CLOTH TIES OFF HIM. THE CHAINS ARE A PLUS TO US.
Update January 2002 - Jonathon went back into the hospital December 19 for pneumonia and RSV again. He did very well this time, still holding at 8 pounds. He came home Christmas eve 12/24 just in time for Santa to come :P He also is now on 5 liters, trying to wean him down to 3 liters again. His stats were 85 to 89 even at 5 liters, he stays at between 89 and 92. Really can't expect more, that's really normal for him.
Update March, 2002 - Jonathon is 7 pounds and 14 ounces now and doing steady. They are in the process of making him a wheelchair with mold stuff and making a mold for his bed too. Seems like it's going so slow, but soon I hope we will have it. He hasn't been sick since Dec 2001, so that's great news. He goes every 3 months now to the peds dentist to get them cleaned until they get removed sometime later this yr.
Update July, 2003 - Jonathon is now 5 yrs old, June 22 was his big birthday. They said he would never make it to see age 5 and here he is:) He is 20 lbs even now and 27 inches long. He has gotten chunky over the past 5 months, he will get there. He has gotten some afo's and a new bath chair and kangaroo car seat to help him sit upright. He is such a joy to have. He is still on oxygen 3 lts @ 35% trached still, nothing has changed but his weight and length and age of course.
Update June 2004 - Jonathon turned 6 years old June 22 weighing in at 33 pounds and 31 inches.He has been doing steady over the past year. He has 7 loose teeth and the tooth fairy is gonna hit us all at one... hehe He is getting a new wheelchair, he has outgrown the kid-kart already he got a rifton chair and it is really neat. He is in 4 t pull ups and 4 t in clothes.. He is big in weight but his length isn't going nowhere. God is Great that is for sure~
Update Feb, 2005: Jonathon passed away in my arms Jan 20th 2005 at 10.55 am. He was sick for the last few weeks and finally went home to be with Jesus.
Sherry and Jonathon in KY
sherrytubbs@aol.com
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- United States
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- Kentucky
