 |
 |
 |
|
|||||||
| 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
01-31-2009, 11:35 PM
|
||||
|
||||
Definitely NOT amused!
Keturah had a massive amount of blood drawn while she was in the hospital for her last episode of bleeding. Hematology was sending out some labs that needed to go to Wisconsin to test for a specific bleeding disorder. The results take 3 weeks. I'm sure you can imagine my anticipation when we went for our follow up visit with them this last week. The results??? They NEVER SENT THE LABS! Classic story of someone thinking someone else did the work. Now we have to go back tomorrow to get the labs done again. They are actually concerned that they are going to be taking too much blood away from her in such a short amount of time, especially with all the labs in the hospital and a month of hemoptysis including a hemorrhage. We also see Reumatology on Wednesday to discuss her borderline positive result for the autoimmune disorder. Normal is 7.5 and she came back as an 8. They are discussing also redoing those labs. She's going to be anemic pretty soon! I can't even TELL you how upset I am about the labs...not to mention the 5 hour round trip and poor Keturah crying over missing ballet.
__________________
Sarah, Mommy to Malakai (9), Aubrey (8), and Keturah (6) trach, vent, Chiari I, BVCP, CCHS http://s109.photobucket.com/albums/n73/lovemymak/  
|
|
#2
02-01-2009, 12:02 AM
|
||||
|
||||
Oh man; I can't even imagine how you are feeling right now. I sure will be praying that everything goes smoothly this time and that they will do their jobs this time. Btw, great family pics....the kids are adorable.
Michelle kirafaesmom www.kirafae.com
|
|
#3
02-01-2009, 12:24 AM
|
||||
|
||||
|
Well, I am sorry about all this. What a pain. I have to have 17 vials drawn every three months and I hate it. I can't even begin to imagine how Keturah feels over this.
I do have to say, the family picture is wonderful, amazing and beautiful. You have just the most beautiful family. Roberta
__________________
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/
|
|
#4
02-01-2009, 12:54 AM
|
||||
|
||||
|
OMG Sarah I can't even imagine how much you were anticipating those results and to have them not send the blood to the lab. Wow! How does that even happen?! I'm SO sorry. You do NOT need that kind of aggravation in your life.
 Hope things go MUCH better the second time.
__________________
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/ 
|
|
#5
02-01-2009, 05:10 AM
|
|||
|
|||
|
I was just saying to Maggie last night that we have not heard anything about Katurah in a while. This is definately not the post we would have liked to have seen. Here is a big
to you, Katurah and the rest of your beautiful family. Talk about an emotional double whamy, being built up with anticipation of something as far as a diagnosis, only to be let down! This is probably already in your plans, but I would track that next blood specimen through the entire system until you know it is in the right hands.Our thoughts and prayers are there for you, Katurah and the rest of your family. I hope your next update is at least a little better than this. BTW, can you do a designated blood doner for her and get some blood added after the tests?
__________________
Father (and mother) to Tommy, born via an emergency EXIT to Trache 8/1/06. Diagnosed with Congenital High Airway Obstruction Syndrome (CHAOS). VACTERRS Syndrome. Vocal cords completely fused until Double Staged LTP 03-03-08, refused shortly after stent was removed. Second Double Stage LTP 1-20-09. CarePage: BabyBoyce “With man this is impossible, but with God all things are possible.”
|
|
#6
02-01-2009, 05:56 AM
|
||||
|
||||
|
Wow, that is awful. Our ped wont allow more than 15 ml (I think that is the number) of blood to be drawn at a time. Once a year we have a nutrition panel done and have to get it done in 2 parts. I'd be very careful, esp since she is already losing blood to the bleeding itself! Good luck! And I too love the family photo! Beautiful...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]
|
|
#7
02-01-2009, 07:28 AM
|
||||
|
||||
|
I would not be amused either - I remember it happened to Cedric as well (not the 5 hour drive) that must add to the frustration. I swear hospitals and labs don't have together sometimes. The family picture is beautiful.
Michelle
__________________
Grand Ma (or Nanou French version of Nana) to Cedric born on August 5, 2006, Trached on October 16, 2007 because of subglottic stenosis due to 27 intubations for debridment of polyps https://www.babiesonline.com/babies/c/cedric1/
|
|
#8
02-01-2009, 07:56 AM
|
||||
|
||||
|
I am so sorry that Keturah (and you) have to go through this all over again. Not right at all. Add me to those who love your new pics.
Karen
__________________
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. 
|
|
#9
02-01-2009, 08:04 AM
|
||||
|
||||
|
Oh Sarah. I can't even imagine what you are feeling.
Your new pics are so great. What a beautiful family you have. You are gorgeous. Your little angel might go through more than she should, but she looks like she is the happiest little angel. Love, Tess
__________________
Tess-mom to Abigail 9 yrs old. DX Central Congenital Hypoventilation Syndrome and has a pace maker. Abby was decannulated April 15, 2010. She now sleeps with a V-pap machine and mask. Also mom to a fiesty red head named Olivia who is 6. I am the happiest mommy right now, all is good.
|
|
#10
02-01-2009, 08:09 AM
|
||||
|
||||
|
Man , this on top of everything else.
 I am so sorry. I am also enamored with your new photos , one of the best family pictures I have seen.
__________________
May Mommy to Sebastian(1-24-06), hardcore former 26 wk preemie, had and kicked butt of many issues, dealing with a few more , including autism. Trached 4/16/06 @ 3 months due to severe BPD and mild Tracheomalacia. Decanned 9-9-09 and doin' just fine !  http://sebastiansjourney.blogspot.com/
|
|
«
Previous Thread
|
Next Thread
»
| Thread Tools | |
| Display Modes | |
Linear Mode
|
|
All times are GMT -5. The time now is 10:36 AM.