 |
 |
 |
|
|||||||
| Pediatric Tracheostomies For parents and caregivers of children with tracheostomies. Please limit discussion to seeking and sharing of information pertaining to tracheostomy care, medical issues, special needs, disabilities, networking and moral support. |
 |
|
|
Thread Tools | Display Modes |
|
#1
11-25-2003, 12:18 AM
|
|||
|
|||
Another update on Jakob...
My son is still in the hospital in Dallas. He was supposed to be released after 6-8 days after having undergone midface distraction and frontal cranial remodeling surgery on 10-31-03. He developed a bone infection and had bone removed from his eyesocket on Saturday. He's now on 4 different antibiotics, but that may be cut down some soon, as the lab results from the bone culture indicated that his bone was infiltrated by bacteria from this trachea. The infectious disease specialist stated that these particular bacteria tend to colonize in trach dependent kids (pseudonomus and some other one I don't remember right now) and he probably got the infection because his sinuses were pulled apart and the bacteria infiltrated into the skull bones. He's still moving air much better through his non-trach passages and this set back should not delay our decannulation attempt this spring, but right now I don't even care about that, I just want him to be safe. We may go home this week.....no PICC line, they're going to surgically implant a long term IV of some sort, maybe tomorrow, for he will need long term IV antibiotic therapy. Sure would be nice to get home before Thanksgiving, but I kind of doubt it. Thanks for all the support and well wishes, past, present and future. Stefan & Jennifer
__________________
Jakob, born Dec 02, Pfeiffer Syndrome, trached at 5 wks age due to mid-face hypoplasia, cranial vaultx2, monobloc, mid-face distraction, g-tube, pyloric stenosis, nissen, nasal stents, VP shunt, tonsils, adenoids, uvula all removed, tongue suspension, future pilot!! 
|
|
#2
11-25-2003, 07:53 AM
|
||||
|
||||
Wow, he's been thru so much! How are his spirits? Im usually amazed at kids recouperative abilities, they seem to feel better so much sooner than I would. I hope you make it home soon and enjoy some nice, quiet family time. Deb
__________________
Grateful thorns have roses 24 weeker now almost 11 years old and in third grade! trach-decanned for good in 2008, gtube, asthma, CP, MR, GERD, latex allergy, osteopenia, aplastic cerebellum, ADHD/OCD, 60 lbs of humor and fiest, 4'4" tall, patient at Shreveport Shriners Childrens Hospital,, and I may be leaving something out but she is happy and growing and the light of our lives! DECANNED 6-17-08 [IMG] [IMG]
|
|
#3
11-25-2003, 07:59 AM
|
||||
|
||||
|
I hope he is feeling better soon. What a nightmare. We are also in Dallas and have had many visits with infection disease doctors. Wonder if they are the same group. Brian has been colonized with pseudomonis, as well. Please let us know how he is doing. I hope he is home for Thanksgiving.
__________________
Mom to Breanna (15), David (12), Christopher and Brian (almost 5). Brian decanned in 2006 and had his g-tube removed in 2007.  B & C are surviving triplets. Brooke survived for 1 month.
|
|
#4
11-25-2003, 09:23 AM
|
|||
|
|||
I hate to hear this news! I know you are surely all so frustrated right now. I guess I didn't even realize that one could get a bone infection. Gaithy is always positive for pseudomonas in her cultures...apparently once it is there it always lies dormant there. We've never had to even treat it (just when they initially found it, when she was still in the hospital). I just want the trach out and to close up her throat - I'm tired of her being so susceptible to things because of it!
I wish you all the best, and that you are home SOON! Thank you for the update. christy
__________________
Gaithy's Mom:28wk preemie born 8/2000 at 1 LB, IUGR, SGA, ROP, BPD, g-tube/nissen. Trached 4-2001 and LTV950 ventilator until 5-2003. Decannulated 8-3-04
|
|
#5
11-25-2003, 02:32 PM
|
|||
|
|||
|
Pseudomonas is a really annoying beastie - Evan has it too. I hope that Jakob is feeling better very soon.
__________________
Laurie - Mom to Evan (the E-man), 27 week preemie, born 2-23-02, trached at 3 months for severe BPD. Vent dependent until 10 months, G-tube placed at 17 months, oxygen dependent until 2 years, 3 months, decannulated 6-27-04 at 2 years 4 months. The most enthusiastic, positive person I've met.
|
|
#6
11-25-2003, 04:05 PM
|
||||
|
||||
|
How awful, you poor mummy and daddy. I hope you lick those darn bugs and he can come home. I HATE this time of year, we have been on antibiotics for 4 weeks straight now and I am giving acidopholus to try to counter the effects of antibiotics. Just think spring, it won't be long and maybe you can kiss that trach goodbye forever. Hang in there.
Kelly 
__________________
Kelly, mother of , Indira 6 (trach and g-tube)[/color] [/color]and Max 4. [/color]When there is no  you are the reason I bound out of bed. Thank-you for giving me life! See Indie- http://www.tracheostomy.com/trachkids/kids12.htm
|
|
#7
11-26-2003, 02:16 AM
|
|||
|
|||
|
I'm sorry to hear about the complications. Ariel also always cultures positive for pseudomonas and seratia, icky bugs. I hope it doesn't hold him up for too much longer and you all get to go home soon!
Karen
__________________
Karen, mom to Ariel born 7/10/02-trached 7/15/02. Chronic lung disease, bronchomalacia, hypopharangial collapse. O2 dependent when asleep. Newly diagnosed with unbalanced translocation, chromosome 7 and 10.
|
|
#8
11-26-2003, 07:30 AM
|
||||
|
||||
|
Thanks for the update! Sorry to hear about the icky bugs, but little Jakob is a fighter. I know mom and dad are probably tired though, but you know it is all worth it! Keep your spirits up and we will be thinking of you.
__________________
Amanda,Mom to Jacob, greatest kid in the world. X-Linked Myotubular Myopathy, trach, vent, g-tube. 
|
|
#9
11-26-2003, 11:32 AM
|
|||
|
|||
|
Yes, Serratia is the bug that got into his skull bones, not good at all. Jake had a Central IV line placed into his leg today, the line goes all the way to his heart, for long term antibiotic therapy.
Hope to go home tomorrow....gotta get the infusion stuff and meds all set up....van's already packed with all his other stuff ready to go. Nothing like turkey sandwiches on the road between Abilene and Midland while listening to the Cowboys game on the radio to make you feel like Thanksgiving. Anyway, just trying to keep our spirits up, ha ha....thanks for all the warm wishes and positive thoughts, we appreciate it greatly.
__________________
Jakob, born Dec 02, Pfeiffer Syndrome, trached at 5 wks age due to mid-face hypoplasia, cranial vaultx2, monobloc, mid-face distraction, g-tube, pyloric stenosis, nissen, nasal stents, VP shunt, tonsils, adenoids, uvula all removed, tongue suspension, future pilot!!
|
|
#10
11-26-2003, 12:57 PM
|
||||
|
||||
|
Have you dealt with central lines in the leg before? I HATE them. Alli has a knack for dislodging them. Is Jake still in diapers? Sometimes the diaper will rub against the line and cause irritation, so I would keep a close eye on it. Ihope your trip home is uneventful. Deb
__________________
Grateful thorns have roses 24 weeker now almost 11 years old and in third grade! trach-decanned for good in 2008, gtube, asthma, CP, MR, GERD, latex allergy, osteopenia, aplastic cerebellum, ADHD/OCD, 60 lbs of humor and fiest, 4'4" tall, patient at Shreveport Shriners Childrens Hospital,, and I may be leaving something out but she is happy and growing and the light of our lives! DECANNED 6-17-08 [IMG] [IMG]
|
|
«
Previous Thread
|
Next Thread
»
| Thread Tools | |
| Display Modes | |
Linear Mode
|
|
All times are GMT -5. The time now is 06:42 AM.