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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
08-26-2009, 07:13 PM
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Bad bad day.....
Not sure where to start, copied what I'm going to put up on Nat's carepage. Keep her in your prayers.
This is a hard update to write because Natalie has been doing so well. Right now Natalie is in the Pediatric Intensive Care Unit at CHOP. Not sure what to say or where to start so I’ll just tell you the events. Natalie has had a very mild cold for a few days. Last night we put her to bed and she sounded great, really she has done well with this cold. Some time after 4 am our night nurse began screaming for us. We went down stairs and Natalie was blue and not breathing. The nurses stated that her sats just started dropping out of know where. We changed her trach asap and David began chest compressions (CPR) and we bagged her. We called 911 and Natalie came around by the time they arrived. She was transported to Pottstown ER (no fun there but won’t go into detail) and she was airlifted to CHOP. No one is sure what happened. The best guess is that she had a mucus plug below her trach and could not breath. Normal people who have a broncho spasm (terrible coughing fit where you can’t catch your breath is the only way I can explain it) can eventually cough up the mucus. Unfortunately, with a trach, that mucus can get caught below the trach and occlude her airway. When you can’t breathe you all know what happens. She also has a left side pnumo thorax. This most likely occurred because of the CPR and being bagged. But it was what saved her life. This is why just having the trach itself is a danger, healthy or not. She is currently in stable condition. She is not on the vent, she is on humidified o2 to her trach, but on a high amount. They have not done a chest tube as of yet and hope that Natalie can reabsorb this air on her own. One of the docs said it is a significant pnumo thorax and in seeing her chest xray it looks like she has about ½ of her left lung capacity. They also stated that it is amazing that Natalie is doing as well as she is right now. Natalie was sitting up and signing this am, looking for Faith. Trying to be a superstar and get everyone’s attention as they walk by. She is now best friends with her nurse because Natty sucked her into playing with her a bit. This is a good sign because as I said, Natalie did not have a pulse when we got to her, The hope is that with how she is presenting, that this episode did not cause significant damage. Her blood work also looked good and it did not indicate issues with her kidneys or liver as this is always a risk when you have to do CPR. I think we often try to downplay everything that goes on with Natalie and certainly do not update every time she is sick or something crazy happens. But make no bones about this, this was the worst thing that has every occurred, even after 9 months in the hospital. Please please keep Natalie in you prayers, I can’t even put into words how we feel right now. Also pray for Faith, she starts kindergarten next week and this little girl has also had her world turned upside down through all this over the past few years. I must say that without David this may have been a different outcome, he saved Natalie’s life this am and I can’t even put into words the emotion I feel. Thanks for keeping us in your thoughts and prayers. Karen
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 [SIGPIC]Karen----Mom to Faith (6), and Natalie born 10/12/07 @ 25 weeks, 1lb 3oz. Came home 6/10/08 with a trach, vent, nissen with g-tube, and pda ligation. BPD, reflux, subglottic stenosis. Off the vent!!!! Double stage ltp 5/10. Decan 5/11/11!
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#2
08-26-2009, 07:21 PM
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(((((((((((((HUGS))))))))))))))))
I am so sorry you all have had to go through such a horrible event!! Please know that my thoughts and prayers are with you all!! I am glad that Natty is doing well today!!
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 http://mamazgirlz.blogspot.com/ Gretch mom to, Heather(22), Aimee(19), and Celia(14) Dandy-Walker syndrome,cleft palate(repaired at 9 yo!),t-tubes,asd, left pulminary arterial stenosis,trach,aspiration,reflux,fundo,g-tube,npo,dysphagia,kidney defect,neurogenic bladder & bowel,spina bifida,scoliosis,seizures,hip dysplasia, sensory issues, ADHD,vasomotor rhinitis,autistic like behaviors, hearing aides.
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#3
08-26-2009, 08:09 PM
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Hugs and prayers coming your way. She sounds good and you guys did a great job despite the fear you must have felt.
 Karen
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Karen, married to Charlie. Mom to Gilbete', Jeanette , Andrea, Ben, Ciara, Brian and Brady. Also mom to Alize who is with God. Grandmother to Marek, Paige, Vincent, Leilani and Cayden, Emma and Samuel. 
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#4
08-26-2009, 08:20 PM
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wow, i just dont know what to say. when i saw this my heart just sank. i know that you guys must have been so frightened with all that occured, but so thankful that the both of you were there to help her like you did. as you said what you all did for her surely saved her life . thank goodness that she seems to be doing better . my thoughts and prayers are with you all thru this very difficult time and we hope that things continue to get better. please keep us posted when you can and just know we are thinking of you all.
Kathy
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#5
08-26-2009, 09:01 PM
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Scary stuff for sure, I'll say a prayer for the little one...........
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Mom to Myles, born July 18/07. Trached August 20/07 for airway swelling due to complications from epiglottoplasty. Failed decann June 27th due to lingering laryngomalacia........
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#6
08-26-2009, 09:06 PM
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OH Karen... how horrible... I am glad to hear she is feeling better... but will send lots of prayers your way!
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Dawn  former 26 weeker -- 4/2006 -- trach, g-tube, nissen; came home 1/07 vented 24/7; Successfully decanned 8/8/2008 -  Follow decan at: http://sleepy-dogs.blogspot.com/
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#7
08-26-2009, 09:18 PM
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Oh goodness! Praying she gets to come home soon. GREAT, GREAT job to all of you for saving her life!!!!
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Rene, Mom to my Angel, Tommy. Born 9/25/06 at 33 weeks, with Single Ventricle Heart Defects and Cricopharyngeal Achalasia (Gtube dependant, poor swallow). Trached at 2 months for Severe Subglottic Stenosis. My little flirt died unexpectly 8/20/08 from complications from undiagnosed bronchopneumonia.  Forever, Tommy's Mommy http://www.musingsofaheartfamily.blogspot.com/
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#8
08-26-2009, 11:29 PM
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Oh how terribly scary. Hugs and prayers you will never have to deal with that type of situation again.
Hopefully she won't need a chest tube to get rid of that extra air.
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Has a daughter who is vent dependent.
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#9
08-27-2009, 12:50 AM
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SCARY!!!! ((HUGS)) I am so glad she is doing better, I hope the improvement continues.
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#10
08-27-2009, 12:55 AM
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I'll be sure to keep you guys in my prayers. Pottstown er with a trach now THAT is a truly scarry thought. I know it went quick but the nurse didn't do a trach change before calling, eh I guess the poop hit the fan real quick. Is your local ambulance service familiar with your situation? I know it's kind of arm chair quarterbacking but if ground transport to an appropriate facility was not an option I would hope aeromedical was consdered in the field. You could have been at HMC within 30 min. So many questions. Keep us updated.
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Home care LPN and Volunteer EMT. The opinions and advice I give do not represent my employers or take the place of your physicians orders. Last edited by Big Al : 08-27-2009 at 01:01 AM.
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