ugh!!!

[J&Jsmomee]

Gosh! You guys are definitely going through a lot. Joel was only in the NNICU for 5 weeks total. One week after his trach. Eventually he was transferred to a regular room where we were expected to do all of his trach care, but Joel had no other medical issues either, so that may make it very different. I would probably request a meeting with all of the doctors present. We did this once while Joel was in the NICU and it really got everyone on the same page- Our page!! I'm so sorry for all of your stress and difficulties. It will get better! Please feel free to vent anytime. I've definitely done my share of venting. That's what the board here is for!

[christyw]

Staci-

Gaithy was only in PICU for about a week after her tracheostomy surgery was done. She did have 24/7 ventilation. She was transferred to the Infant and Toddler Unit (ITU) after a week. In the ITU, there were 2-3 "wards" or rooms that had pretty much all trach and/or vent kids in them, so we had nurses who specifically dealt with trachs full time - that's a plus when you're learning yourself. Now in our current situation, it wouldn't matter what floor gaithy was on. In fact, to keep her away from infection on return visits for bronchs and granulation removal that have warranted overnight stays, we've been stashed in the Burn Unit once and other places because the ITU also houses sick kids that have RSV, etc...they are just in different rooms. Anyway, it doesn't matter now where gaithy stays because I'm not leaving her alone or without my Mom or my husband. I have learned to question and follow up on every step that the staff makes (most of them do not appreciate this, but it's a must). I make sure meds are correct and find out the whys and where's of every situation because no one is competant enough!!! (a little CONTROL complex that so many of us take on!! http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/smile.gif )

I do think that conference that J&Jsmomee mentioned is a great idea and if you can manage to get the BMT docs AND the ENT docs together on this it would be nice for you. Still, 1:1 nursing doesn't help if the nurse is clueless about trachs. It just sounds like they aren't covering all their bases right. Maybe you can get them into shape! And hopefully they will find a good fit for the trach soon!

christy

[cariaad]

Alli has been in NICU, PICU and private rooms with her trach. I have never left her for more than 4 hours unless my husband was going to be there since she left NICU. All hospitals are probably different, but our PICU has "closed" glass walled rooms and each patient shares a nurse with usually 1 or 2 others. I just dont feel comfortable leaving her, I've had to train most of the nurses and resp therapists about caring for the trach (enough said). No one knows her like I do, and also I want to be on hand to moniter meds etc (control mode). And, since she is under 6 our hospital requires someone stay with her whenever shes in a private room anyway. You should insist on a care conference with all docs and head nurses present to get it all clear why the 1:1 is needed. Be loud-make your concerns clear (they are valid&#33http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/wink.gif and get the care she needs! Let us know how things work out. Deb

[Michael's mom]

If the nurses on your floor are not trained with trachs, do not know how or when to suction, they should have the baby moved to the ICU. We are NEVER outside the ICU no matter what we are admitted for. This is because the ICUs (where we live anyway) have nurses trained with trachs and they all have Respiratory Techs on duty at all times. The other units do not. I would call an immediate meeting, tell them that you are dissatisfied with the level and quality of care you are receiving. If the Dr does not respond, call the Patient Advocate immediately. That is what they get paid for. Following what the other people said, I try to always be there when my son is in the PICU, but being a single mom with 2 other kids, it is difficult, so I have friends come in shifts. Still, I have come in and had my infant in a crib, curtains closed, with a bowl of very sharp frosted flakes when the child couldn't eat and had just decannulated 2 days before and we lost him for 4 1/2 minutes! When that happens, make a giant sign and post on his crib saying....THIS CHILD NEEDS CLOSE WATCH! LOOK AND LISTEN FOR SIGNS OF DISTRESS! CALL A RESPIRATORY TECH WHEN IN DOUBT! or something similar. My son's sign read: Please do not close my curtain! I like to pull my trach out and turn blue! Love, Michael You get the idea. Good luck and fight for your child, you're his voice! Susan

[Olga]

I am so sorry that you are having such a bad time of it. When Grace was trached she spent three nights in ICU and then was transferred to the ENT ward where ALL the nurses are fully trachy trained. Is it because of the other medical issues that your daughter is not on an ENT ward? At our local (excellent) children's hospital ALL trachy patients are admitted on to the ENT ward regardless of what their medical problem is, as, rightly so, the ability to breathe takes first priority. Can you ask to be transferred? I hope that this is resolved quickly as you have been through enough already. Olga