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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
03-17-2008, 11:08 PM
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11 days in the hospital and holding.....
We took Livi to the hospital a week ago Sat 9am because she'd stopped peeing and her belly was huge. Went thru 7 hrs of all sorts of tests, etc to them concluding that it was either her shunt which had made a CFS balloon in her belly or her appendix. Emergency surgery sat night to remove the appendix and clean out her peritoneal cavity. Oy vey. CSF and blood cultures came back positive for MRSA.
So next surgery was removing the shunt and tubing and hooking her to bi-lateral EVD poles this week. What.A.Nightmare! POOR GIRL wants to sit up, move, be held but she can only do that for 30 mins twice a day. We did a CT Scan with contrast in her ventricles today to see if there was a blockage between them or not. There isn't!!  So now the plan is to put the shunt back in Thursday morning and get out this wknd. (I hope wknds are the worst to get discharged!)The only thing is we have to go from the VP shunt to a VA shunt and that really worries me.  All the while having her an hr away and then both boys in school. One at 7am, one at 7:50 am then getting out at 2:30 and 4:15. THEN some damn nurse wants to get us in trouble for having both boys in there because it's only 3 to a bedside. <eyeroll> No one thought twice about it for 9 days! And it's not our fault we're still sitting in the PICU just because the TICU is full. Good note though, nothing trach/lung related! We could use any positive thoughts you can muster up! 
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Trish PROUD Mama to TWO 26 wkrs 1055 g- Olivia Forever 7, trached for 6.5 yrs, gtube, iv port, BPD, Hydro/VA Shunt, Epilepsy, CP, Fought Hepatoblastoma for 28 months 688 g- Nathaniel is my bright 10.5yo 
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#2
03-17-2008, 11:18 PM
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Oh My Goodness Trish. That just sounds like you have been though the righer herre. It is good that things are slowing down, but man oh man. We will be keeping you and Livi in our prayers. Keep us posted.
Roberta
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Married to Merrill...33 years...Blessed Mom to 21 as of last count...  Michael-33, Maxwell-29, Mallory-27 Justin-23, Marshal-23, Jesse-22, Jeremy-20, Micah-18, Mordachi-15, Jericho-14, LisaMarie-12, Joseph-11, McClain-9, Joey-8, MacGyver-5, Maverick, McCoy 2, his twin sister Macylea and the youngest Montana 16 months. Malachi and Jason-in Heaven watching over us all. http://www.merrillsimonfamily.blogspot.com/
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#3
03-17-2008, 11:18 PM
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Poor Olivia!!! Nothing worse than trying to make a child be still for almost 24 hrs a day...
Hoping for another smooth surgery and recovery... since there's no place like home (or mom as your nurse). 
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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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#4
03-17-2008, 11:23 PM
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I am so sorry for your terrible week. Some days seem endless when you are in the hospital. I was glad to read the one positive note that there was nothing trach/lung related. The nurse should allow your boys in the PICU. I certainly hope that you did not get in trouble about that. They just don't understand. Good luck with everything.
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Kira - Mom to Jenna (10), and Jaci (8), neurofibroma resection in '02, bilateral vocal cord paralysis, trach, tracheomalacia, bronchomalacia, tumor regrowth in '05. http://s266.photobucket.com/albums/i...urrent=163.jpg
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#5
03-18-2008, 12:06 AM
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oh poor girl!
i hope she gets better soon! some nurses are just plain rude! when anthony is in PICU he useally has his own room and they never have told us anything about having more than 3 people in there! i mean come on they are her brothers but i am sure we all understand the risk in case of an emergency some nurses just do not care! sending prayers your way
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Mom to Anthony (4 1/2) born on 7/6/05 at 29 weeks. Thought to have Jeunes Syndrome. Trach/gtube/sprints off the vent twice a day. Cadence 15 months. Jayden 7 weeks. Stepmommy to Ariana age 8 and a half Anthony's Myspace http://www.myspace.com/anthonyxavierruiz My Myspace http://www.myspace.com/babysupermansmommy
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#6
03-18-2008, 12:18 AM
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Wishing Livi the most speedy of recoveries! I'm sending healthy vibes your way! And
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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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#7
03-18-2008, 09:59 AM
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Hope Livi and family are holding up. Don't worry too much about the VA. They tend to be reliable and you don't have to worry about a build up of CSF. Alize had some problems with his clotting off but they told me that was not the norm with most kids. Just remember that Livi will need propylactic antibiotics before dental work. 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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#8
03-18-2008, 10:01 AM
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OMG! I can't believe all that happened to sweet little Livi. I hope she is feeling better soon. That is so dumb about having an extra kid by the beside. Tell the nurse they are small they should count as half a person LOL really those rules are made usually for safety because they have to get to a patient with ease, and kids are small for crying out loud its not like you had 3 extra kids in there are something.
HUGS to Livi get well soon sweetie girl
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LORI--MOM TO ELLA AND EMMA(born 10-16-04)AND DEREK (born 9-13-01) EMMA- CP,TRACHED, G-TUBED DEC 2004 AND VENT DEPEND JUNE '05, CORD ACCIDENT DUE TO MONOCHORIONIC MONOAMNIOTIC TWIN PREGNANCY 
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#9
03-18-2008, 11:41 AM
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Hope she gets home soon! And tell that nurse to bugger off!
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Suzanne Mom to: Berkeley (June 2002),Griffin (July 2004), and Parker (November 2006) My family blog: http://www.mylifewithboys.typepad.com Parker's LTP Blog: www.parkersplace.wordpress.com 
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#10
03-18-2008, 12:12 PM
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I hope she is stable and home in no time. I'm sorry she's been so ill.
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Kristy Nathan is 7! Trached at 2 hours old--laryngeal atresia. Double stage LTP 5/26/06, double stage LTP 1/23/09 and single stage LTP 4/21/09. Airway has restenosed, but we're still trach free 9/2012. Ding dong, the trach is gone!!
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