caligal_7
TrachKid Profile
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On Oct.28 2009 my husband and i welcomed our lil boy Tatum into the world never expecting what was next to come. Tatum never cried after birth and soon began to stop breathing and seize. He was bagged until the flight team arrived and vented him. Within an hour my husband and Tatum were flying 4 hrs away to a different hospital. He has been in the hospital for two months now back n forth from cpap to nasal canula failing every time the drs tried to wean him off. On Dec.28th he got a trach assuming that was the next step closer to coming home. Since then his seizures started back up again not exactly sure why and cultures have come back that he has pseudomonas. We have a 3 yr old boy at home and this whole situation has taken a toll on all of us.
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Cough Assist Treatments???
23 April 2010 - 12:08am — caligal_7HI Just wondering has anyone had to use the cough assist to loosen up secretions? The Pulmonologist has prescribed it for Tatum but every RT we have talked to is unsure about the use of this machine on an infant so young. Any info helps
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Homeward Bound...
18 March 2010 - 12:49am — caligal_7Well we have gotten a planned discharge date after 5 long months our baby boy will be coming home soon. My husband and I were just wondering if there were any recommendations on a type of home Crib that would work for our boy Tatum...He is on the vent and all the other necessities but any opinions will help up get situated thank you
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Series of seizures along with desats....
3 January 2010 - 2:03pm — caligal_7We were under the impression Tatum only needed to get the trach and we would be goin home. since the procedure he has been having seizures back to back. The neuro surgeons say hes having a different type of seizure on top of his regular ones. Instead of rythmic body movements hes completely still but his breathing will drop from 100% to 15% in a matter of seconds. My husband and i arent sure how to feel. The doctors just keep trying different tests which come back negative, we were told our babys like a mystery they dont know whats goin on. even his eeg came back normal. any thoughts or ideas on this feel free to comment back
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| Title | Poster | Replies | Updated |
|---|---|---|---|
| Cough Assist Treatments??? | caligal_7 | 1 | 1 year 30 weeks ago |
| Homeward Bound... | caligal_7 | 1 | 1 year 46 weeks ago |
| Series of seizures along with desats.... | caligal_7 | 0 | 2 years 5 weeks ago |
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Don't give up
aimee wilmont
I can totally understand how you are feeling right now. Our daughter has was hospitalized quite a few times last year and we had a two year old little boy at home. It was very hard to deal with sometimes. When your with one you feel like you should be with the other one. Thankfully we have a wonderful family who helped us with the two year old because there were many times that seemed touch and go with Kenlie and we needed to be there. She was trached 5\26\09 because of seizures, she started having them out of the blue and she was intubated, when they extubated her she ended up codeing that night for 23 minutes, the scarriest of my life. This last time she was in the hospital for 8 weeks and we were blessed enough to have a foundation at the hosptial who had and appartment and they put us up in it so we were able to bring or little boy up with us. Our days were spent half with him and half with her but it almost got to be the normal for us and at least we were all together. Check with your hospital and see if there is any kind of foundations that have appartments for you to stay in or even if they have a ronald mcdonald house, we used that a couple times too and you can bring your 3 yr old. Its not perfect but it's a way you can all be together in the same area and you can see both kids every day. I wish you all the luck in the world! Kenlie has been home since sept on a vent but doing great!
I don't know...
I would be so scared. I wouldn't know what to be doing - stay with the 3 year old or constantly be at the hospital.
I hope things start to get sorted out for you soon.
Nancy