Wednesday, October 13, 2010


A week after deciding on a cuffed trach and we are still waiting. There were delays in getting all the specialists to agree and then find a vendor. This vendor works with the ENT clinic but not the hospital, so the hospital had to approve them as a vendor. Once that was complete, the vendor needed the hospital to jump through hoops to insure payment. sigh. Doctor finally begs them to Fedex the trachs already and we promise promise promise they will be paid for. They were supposed to be here today and we were very disappointed that we have yet one more day of waiting. They should be on the loading docks tomorrow morning and the neonatologist said if he had contacts down there he would have someone expedite it to the NICU.

There is no real change. She continues to struggle with oxygen saturation and no one knows why. She should be over the surgical set back, her pulmonary hypertension is no worse (according to the last echo), they even put her on an oral antibiotic for good measure after reviewing consecutive gram stains of her trach aspirates. Our last best option is the air leak, otherwise the explanation we are left with is disease progression and there is nothing more they can do.

We had a sit down with the social worker (love her) and the current attending (he has been fantastic). We wait to see what the cuffed trach does. In the meantime, we asked them to consult with some pulmonologists from larger hospitals to get feedback. We also asked for the first time if Natalie would possibly be better off in a larger institution. This is a touchy thing to suggest and the next best option for us (CHOP in Philly) is over 5 hours away. It would mean some incredible maneuvering on our part, and she would have to be stable enough for the drive. That being said, I never want to wonder if another hospital could have done more for her.

Dr. S is going to talk to people and see who the best consult is. We are waiting to see what happens when her air leak is under control. Waiting to see if the consult will have suggestions, waiting to see if another hospital thinks they can do more for her and if they are willing to accept her as a patient. Everything in me wants this air leak to be the problem and for her to make steady improvements right where we are. In the meantime, we wait.

I realize I have been talking about the cuffed trach and not explaining it. The diameter of her current trach (a basic Shiley model) is considerably smaller than the diameter of her trachea. A cuffed trach has a small balloon that is inflated around the shaft of the trach to minimize the air leaking around it. This is not without risks-the contact and pressure on her trachea can cause tissue breakdown. Developmentally it eliminates her ability to vocalize and will make tasks such as eating and swallowing a little more challenging to master. We hope the cuff is a temporary solution and that as her respiratory status improves the need for the cuff will be reduced.

We thank you for your continued prayers and kind words. I have received so many wonderful emails and notes of support. This has been a very trying time in the midst of a very long hard road and I so appreciate the kindness we've been shown.

1 comment:

  1. Sending positive vibes your way.. Sorry Natalie isn't progressing as quickly as we would all love her too. You are amazing...
    HUGS to you all