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| 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. |
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#1
09-27-2010, 12:33 PM
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Back in Action
It has been a while since I've been on here. We've been busy with life as well as health issues. The short version of the last few months is....
#1 - G-tube was removed in March and surgically closed in April.  #2 - Keturah still hasn't been doing well with eating and has gone off her growth curve, only gaining 2 lbs this year. #3 - We added Psychology to the feeding therapy as a last ditch effort to get her to eat. Things still haven't been progressing, but we have continued with Psych due to her terrible anxiety regarding any and all medical procedures. That issue could be a whole post in and of itself at some point... #4 - Keturah has continued with her hemoptysis (coughing up blood). The meds from Hematology just aren't effective anymore. #5 - Hematology and Pulmonology agree that Keturah's recurring infections, permanent atelectasis, and bronchiectasis are most likely to blame for the bleeds. The platelet aggregation defect just turns the bleeds into hemorrhages. We are now talking about possibly doing a lobectomy to remove the diseased tissue. We've been talking about it for a long time, so we will see. In other news, I am now on the Family Advisory Council and Patient Family Center Care Team at our Children's Hospital. So far I am loving being a part of making "my hospital" what I want it to be. I am going to put a post in off topics that I need help on. I am doing a research project with some people on our PFCC team that I would love some help with feedback, so please check it out! I know I've missed a lot of what's going on here, but I'd love to catch up with everything that's going on with all of you!  Sarah
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Sarah, Mommy to Malakai (9), Aubrey (8), and Keturah (6) trach, vent, Chiari I, BVCP, CCHS http://s109.photobucket.com/albums/n73/lovemymak/  
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#2
09-27-2010, 12:49 PM
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Welcome back Sarah, I've missed you. i'm sorry K is still battling all these issues - hope the surgery helps with the bleeds, the poor girl must be completely fed up. Congratulations on the new 'job' I am sure you are the perfect candidate to improve things!
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  Sam Feb 11 2003 Opitz G/BBB syndrome, mickey, nissen, autistic,supraventricular tachycardia, bronchiolitis obliterans. decanned May 30 2009. 2 brothers Jonathan (23) James (14). I am first and foremost a child
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#3
09-27-2010, 12:57 PM
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NIce to see you back! Ive missed you, thanks for updating~sorry feeding is still such an issue. Please keep us updated on what is going on with the lung~that is so scary that she can bleed so bad.
Great news on the new job! Im sure you have many ideas on how to make improvements
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 Lynn, mother of Brooke(19), Haely(17), Sydney(12)Dominic(1) and Joseph(DOB 11/03/06)DX:Jeune's Syndrome:trach 12/12/06:vent depend: Sprinting 12 Hrs a day!!!!EE:GERD:Hydronephrosis:Situs Inversus:Aortic Stenosis:Myocardial Hypertrophy:Kidney Transplant 08/18/10 http://www.caringbridge.org/visit/josephmollica
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#4
09-27-2010, 01:40 PM
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We missed you!!
Keep us posted, sweetie!
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Melisande H. Mother to The Preeminent Grand Poohba Donovan (5/27/03), still some "resolving" apnea, on the autism spectrum and some cerebellar malformations. Trached since he was 6 weeks old. Recently DECANNULATED 4/16/09!! Big brother to Conrad! 
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#5
09-27-2010, 02:52 PM
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Great to see you! I have missed you as well! And glad you are loving your new "job"!! Very exciting. Sorry to hear that Keturah is still having the bleeding issues.
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Katie-mom to Mitchell, DOB 12/16/04 trisomy 13 mosaic, severe laryngotracheobronchomalacia trached 5/04, cleft lip and palate DECANNULATED 12/16/10 A GREAT BIRTHDAY GIFT! www.caringbridge.org/mn/mitchelljohncragg 
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#6
09-28-2010, 12:54 AM
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Welcome Back!
Louise D
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Mom to Aubrey 25, Alfonso 30 (Aubreys new husband), Andrew 22, Angelo 9: Trached at 8mo due to car accident. Subglottic stenosis, Paraplegic, g-tube (closed) neurogenic bladder and bowel. Decanulated 07/25/07. Re-Trached 9/26/07
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#7
09-28-2010, 05:08 PM
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I started to reply yesterday but my computer crashed. I'm really happy to see you back here! I hope you'll continue to check in. I'm sorry to hear Keturah is still having bleeding. You must be so tired of that. It's great that she lost the feeding tube even if she isn't as heavy as you'd like. That's fantastic! It's cool that you are helping out at the hospital. I'm sure your input will help make it a better place. I hope all's well with the rest of your family. I'll look for that off-topic thread.
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SUSAN - Mom to Ainsley (age 6 - DOB 10/18/06) + Evie (age 12) and Adrian (age 9). Adorable and Trached since 11/06 (scarred vocal cords & OSA) but capping with mixed success since 1/09, sagittal craniosynostosis (cranial reconstructions 1/07 & 7/07), MicKey G-tube 06/07, Nissen 10/08, unusual form of cerebellar hypoplasia, hip dysplasia (Surgery 11/07 & 4/10), ptosis(post-surgery). Blog Link: http://ainsleyrae.blogspot.com/ 
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