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Old 07-17-2011, 03:23 PM
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Cillian's Mom Cillian's Mom is offline
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Default back in hospital - More bleeding
Well guys, Cillian and I took a lovely scenic helicopter flight to CHP last nigh a little after midnight because he is starting to cough of blood again. So far, since last night at 8pm, he has coughed up about 250cc of blood. They did a chest x Ray and it looks good, they did a trach scope, and pulm says they don't see the benefit of doing another bronch since he has had 7 in the past three months that show nothing. I am really having trouble understanding how they can't find the source of the bleeding when he is at the hospital actively bleeding 100+ cc's right in front of them. I am getting really frustrated with the lack of answers. I swear if they send him home one more time telling me, sorry, we don't know where all the blood is coming from, but bring him back in when you feel the bleeding is too much, I am going to go out of my mind. We sent all of the information to Dr. Cottons office a week ago and I am still waiting on the second opinion. They did put a pic line in just so they have access in case of an emergency because he is such a hard stick. There was some talk of maybe doing a tagged red blood cell scan to see if it shows anything. I know I have asked this before, but if anyone has any ideas where severe tracheal bleeding can be coming from, please let me know. They are telling us that its not from a granuloma or erosion or anything in the trach. The keep saying that its distal from the trach maybe a pulm artery or something. These answers from the MD's just aren't good enough anymore. Kepp praying for him. Thanks guys
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Kara. Mom to Bailey (3/14/2006), Mason Premie (09/17/2007), and Cillian - Digeorge Syndrome, Tetralogy of Fallot, ASD, VSD, Pulm artresia, non functioning pulm valve (replaced with human homograft valve 8/2011), mild tricuspid valve failure (repaired 8/2011), tracheostomy, g tube, nisson fundo, double hernia surgery, submucosal cleft palate, aortic stents, pulm hypertension, tracheobronchial malacia born 1/10/2009. Three sweet angels.
Last edited by Cillian's Mom : 07-21-2011 at 09:45 PM. Reason: update
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Old 07-17-2011, 04:51 PM
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mum2dylan mum2dylan is offline
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Kara so sorry you still have no answers regarding Cillians bleeding. ..the poor little fella doesn't deserve that..please god the docs will find out soon & come up with a plan of action..ps.I LOVE the new photos of Cillian posted he is such a handsome fella..
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Marie-mum to 3 boys -Ben(May 05) Marc(May 11) & Dylan(Sept 07)-Tetralogy of Fallot(repair may 08),Trached due to severe subglottic stenosis(July 08),G-tube(oct 08),Nissens(Feb 09),First Stage LTR(Aug 09),CTR(Nov 11).
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Old 07-17-2011, 09:59 PM
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Kara,

I'm sorry to hear that you all are going through this again as well. My Savannah was coughing lots of bleeding at one point,too. But we were already in the process of sleep studies,etc. for decannulation and we knew she no longer needed it. After our third trip to the ER and doctors telling us to come back when it was bright red - which it already was- my husband told them if they discharged us, the trach would magically disappear. For us, it was just a matter of irritation. Things dont sound that simple in Cillian's case, but maybe so? Can you try a different brand of trach-more flexible,different material perhaps?

Will definitely say prayer for Cillian and your family tonight!
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Daughter born with tracheomalacia & bilateral dislocated hips, trached 5/4/2010 at 1.5 months, decannulated 1/16/2011 at 9 months old!! She's my hero
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Old 07-18-2011, 02:20 AM
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JWorthington JWorthington is offline
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Kara, I am so sorry, poor Cillian has suffered enough. hope they can resolve it once and for all I love the pic too - he's gorgeous
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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).
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Old 07-18-2011, 04:04 AM
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glowingpurpleaura glowingpurpleaura is offline
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oh no! not good, i'm so sorry you cant get answers. I wish i could do something to help , just know i'm thinking of you guys xx
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Mum to an ex 24wk prem now 5 yrs old with Chronic lung disease, choroid web, immobile vocal cords and vision impaired from ROP. Decanned 10th March 2011 , repeat LTR due to body reabsorbing graph April 2013, Re -trached april 2013
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Old 07-18-2011, 06:32 AM
Sweet Harrison's mommy Sweet Harrison's mommy is offline
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Ugh! I am so frustrated for you. How can they continue to send you home when there is an obvious issue going on? It's their job to continue to investigate until they find the source of the bleeding. Don't let them send you home until they give you an explanation. So sorry you are going through this. Prayers for Cillian
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SUSAN-mom to Harrison, born full-term(11/1/10) with an undiagnosed congenital diaphragmatic hernia (CDH), hypoplastic right lung (caused by hernia), trached at 4 months, g-tube and fundo at 6 weeks. Home in March 2011. Weaned completely off of the vent in July Wearing PMV 24/7, 02 at night, failed decannulation in October. Hoping for better results next time!
www.caringbridge.org/visit/harrisonsnow
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Old 07-18-2011, 06:53 AM
davisgld2 davisgld2 is offline
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Default Cillian
Cillian is in my prayers. I also sent you a private message.
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Old 07-18-2011, 08:33 AM
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I'm so sorry--I wish I had some idea about what's going on, but I really have no idea. Hugs to you all and I pray that you find a simple answer really soon.
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JENNIFER-mom to Linton (11), Gideon (7), and Linnae (3-born 5 wks early on 3-22-08), PRS, Trach April 08, VSD-repaired Sept. 08, Ear Tubes-Jan 09, Cleft Palate-repaired May 09 (severe complications with tongue swelling-still ongoing issue), Jaw Distraction-June 09, Jaw Distractor Removal-Nov 09, Adenoidectomy-Feb 10, Reflux-resolved, Discharged from P.T. and O.T...hoping for decan sometime soon! http://www.caringbridge.org/visit/linnaeellis1
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Old 07-18-2011, 10:36 AM
Caleb'sMom Caleb'sMom is offline
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I think of Cillian often....prayers are with you all that you hear from Dr. C soon.
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Mom to Caleb- born 9/7/2010 at 40 weeks, VACTERL association, thoracic insufficiency syndrome/restrictive lung disease related to scoliosis and missing/fused ribs, trach and G tube on 12/21/2010, home for the first time on 1/12/2011 , VEPTR implant 1/2012, working on being vent free
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Old 07-18-2011, 12:45 PM
lilwedwritinghood lilwedwritinghood is offline
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You are included in our long list of prayers! We pray for Cillians health, peace for your heart, and for the doctors to have wisdom and provide you with answers!

LOVE the pic of Cillian.... what a doll!
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Jenna- Mom to Nicolas, born in August of 2009 with campomelic dysplasia, trach/vent dependent, g tube fed, reflux, kyphoscoliosis, and the light of our lives.. he loves his healthy siblings Taylor 19,Tim 17, Allie 16, Moses 13, and Oliver 10!!

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