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Old 01-20-2004, 08:53 PM
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OMGoodness..where do I begin?! Well, first of all, Jacob is in the hospital and has been there since yesterday afternoon. About a week ago, I noticed some blood-tinged mucous when I suctioned his trach. I didn't think anything of it, because it does happen from time to time. It came and went for several days, then, on Thursday, I was suctioning bright red blood. It really scared me, but Jacob had no other symptoms. I called his pulmonologist (he is our "primary" doc) and he suggested using some Neo-Synephrine nasal spray and making an appointment with ENT to have it checked out. The Neo-Synephrine worked very well - the blood was gone after 2 doses. Well, to minimize suctioning and irritation, I kept him on the vent over the weekened and didn't suction anymore blood until late Sunday. Jacob woke up from his nap around 2 and he had a 102.9 F temp and sats were 90-92 with 4 L O2. So, we finally got his fever down and his sats up and he was doing well. I was just thinking, "OK, here we go again...a few days of round the clock nebs, cpt, maybe call the doc for some antibiotics." So, things were good until Monday morning. I could not do anything to keep his O2 above 90. His heart rate was 190, respiration rate was 65-70. So, I called 911 and Jacob and I rode in the ambulance to the hospital - a first for both of us. After about 2 hours at the hospital they put him on a rate - 20 bpm - and he was instantly a different child. His heart rate went down to normal range (120ish), respiration went down to 30, etc. His x-ray shows upper right lobe and lower left lobe pneumonia. I have never seen his films look so bad. His pulmonologist said he has probably aspirated some of the blood and it has also become infected.
The last time Jacob was in the hospital was exactly one year ago because we thought we would be having his 1st b-day there. Well, we may be having his 2nd b-day there. I swear I have never seen him like this. He is so protective of the vent and when I try to take it off to suction him he pulls it back and tries to put it on. He KNOWS what it is doing for him.
The ENT will be coming in the morning and will probably do a bronch to determine where the bleeding is coming from. However there has been no blood since he was admitted.

I have to get back to the hospital...just came home to get a quick shower and some dinner.

Please keep Jacob in your prayers and thoughts.
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Amanda,Mom to Jacob, greatest kid in the world. X-Linked Myotubular Myopathy, trach, vent, g-tube.

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Old 01-20-2004, 09:01 PM
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Amanda, sorry to hear about this! I hope Jacob recovers quickly. You'll be in our thoughts and prayers. Deb
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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
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Old 01-20-2004, 09:41 PM
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Amanda, both Jacob and you are in my prayers. There is nothing worse than being in the hospital. Hope Jacob is home soon. {{{HUGS}}}

Ann
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Old 01-20-2004, 09:48 PM
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Hi Amanda,
We're so sorry to hear that Jacob is sick. I hope he improves quickly and is feeling good enough to celebrate his big birthday #2 at home! We are thinking of you all and will say a prayer for Jacob's speedy recovery.

Erica (Lily's Mom)
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Our fabulous Lily was born 5-26-01 with partial trisomy 7q, Pierre-Robin sequence, VSD, GER; had trach, GT, Nissen at 4 weeks, cleft palate repair at 6 months and 18 months. Decannulated 11-15-04. Proud big sister to Benjamin 10-10-03, baby Vivienne 3-5-07!
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Old 01-20-2004, 10:09 PM
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Amanda,

So sorry Jacob is in the hospital! Will say a prayer for him in hopes he is back at home with Mom and Dad soon!


Lesley
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Lesley, mom to Colin born 11-4-02. Trached at 10 days old Tracheomalacia and vocal cord paralysis. DECANNULATED May 29, 2004: little brother Fintan born 1-29-07 also trached at 10 days old due to billateral vocal cord paralysis, Griffin born 3-8-10 ALSO trached due to BVCP

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Old 01-20-2004, 11:49 PM
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I'll be praying that his hospital stay is brief and he is home soon!
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Old 01-21-2004, 06:59 AM
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Amanda,
I was wondering where you were Â*
Jacob boy, I hope you are feeling better now, I hope you are on the mend, I know its not nice being in the hospital, I bet having mummy around to look after you makes you feel better. I hope your mum is getting some rest too
Take care little man, we are thinking of you.
Â* Â* Â* Â* Â*

Jessica
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Jack (4 years) X-Linked Myotubular Myopathy, Trach/Vent/G-Tube, Cute button nose, Heart melting smile, Cheeky as can be!
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Old 01-21-2004, 09:16 AM
Karen S. Karen S. is offline
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Amanda, I am so sorry to hear that Jacob is sick and in the hospital. I will keep you and your family in my prayers during this difficult time.

Get Well Soon Jacob!!

Karen
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Old 01-21-2004, 10:14 AM
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Awwwwww...............that stinks. Poor little baby! Unfortuanetly hospital is probably the best place right now (I know how very hard it is). We are sending our thoughts and prayers for a very speedy recovery.

Kelly and Indie.
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Kelly, mother of , Indira 6 (trach and g-tube)[/color] [/color]and Max 4. [/color]When there is no you are the reason I bound out of bed. Thank-you for giving me life!


See Indie- http://www.tracheostomy.com/trachkids/kids12.htm
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Old 01-21-2004, 10:54 AM
Olga Olga is offline
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I'm so sorry your little one is ill. I hope he gets better soon. Grace was in hospital last January with a chest infection. I suctioned nothing but bright red blood for about five days. I was really worried, but the nursing staff weren't concerned and said that this was normal because the constant coughing caused the trachy to rub against the trachea and this caused the bleeding. Suddenly the bleeding stopped, almost as if a tap had been turned off and she got better really quickly. I hope this story helps allay your fears. Best wishes. Olga
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