Now cpap..?

Hannah&Jacobsmommy · #1 06-28-2005, 06:26 PM

WE just got back from Seattle and the Pulmonary Dr wants Hannah on CPAP at night and to use a cough-assist? I tried to tell him no more machanies. He just LOL at that one.
So if Hannah is on the trach mist how does that work with the CPAP? We also got a PMV so nice to hear her but she looks like she cant breath is that normal?they tried it there and siad she did ok and to try it 30 min a day. And one more thing does any one elce use Hypertonic saline nebs? 3% ? just things I have never heard of.

Trina

Whitney · #2 06-28-2005, 07:52 PM

We didnt do the PMV trials until after Alex had a recent bronch to confirm there was enough room between the inner canula and trachea for air to pass around (large enough air leak). Â*Otherwise, when they exhale, the air wont be able to get past the trach. Â*I would inquire about that. Â*It took Alex a few times to adjust, but he had a large air leak too. Â*Alex was on CPAP initially. Â*In those circumstances, you would have a CPAP machine (can be a large contraption requiring a compressor and IMV system, a ventilator can do CPAP, and a small CPAP machine). Â*Hannah would be on CPAP instead of a mist collar unless there is something I dont know about. Â*I am not sure about the cough-assist.

We never had to do it, but some people have drilled holes in the PMV to alleviate the pressure....something else to consider...

les527 · #3 06-28-2005, 10:28 PM

Trina,

Does Hannah have a speech therapist? When Sam received his PMV, the speech therapist was the one who initiated using it. Until she was certain that he was going to tolerate it, she requested that we not use it unless she was there to watch. Even before she tried the PMV, she insisted that Sam have an oximeter so she could closely watch his oxygen sats, and she never took her eyes off of him because she was always looking for any signs of distress. He was always typically at 99-100 percent without the PMV, and she never wanted him to drop more than 2 percent once it was placed. Fortunately, he tolerated wearing it; the only problem we have is that it tends to dry his secretions too much.

Sam also uses CPAP only at night. Rather than a trach collar with heated humifity, the humidity runs through the CPAP and the CPAP circuit connects directly to his trach. When he was on the trach collar, he always had a lot of problems with redness and irritation of the skin around his trach. Now with getting the humidity directly into his trach, the skin around his trach has been perfect for over a year now which makes him a very happy boy!

Leslie, mom to Sam

Hannah&Jacobsmommy · #4 06-29-2005, 04:44 PM

Leslie

We do not have a speech therapist yet but have one comming out on the 8th. Hannah is on a pulse OX all the time as well I just think it looks like she is gasping for air her Sats are good so I dont know if that look is normal at first.? I know with her secretions we will not be able to use it as much there are very think. I hope the CPAP helps her with that. We have a sleep study set up for end of July to she how she is doing on it.
Trina

Jacob's Mom · #5 06-29-2005, 09:11 PM

Trina, Â*Jacob started out on CPAP via LTV950 ventilator when he was 11 months old (now he is on a rate). Â*If you go that route, you would just replace the mist collar with the vent w/a heater for humidity. Â*

As for the PMV, Jacob couldn't tolerate it for 2 seconds when we first tried it. Â*After reading about it here, we drilled a 1/16" hole in the side of it to relieve some of the pressure. Â*That worked for him. Â*We slowly weaned him to wearing one w/out a hole, and he now wears that all day. Â*For some kids, it just takes time and patience. Â*Instead of 30 min at a time, I would try 1-2 min 10-15 times a day and slowly increase that time. Â*Just an idea...

Jacob gets 3% hypertonic saline nebs. Â*Actually we just d/c'd his daily dose last week, but we keep it around for prn use. Â*He also gets it 3-4 times a day when he is sick. Â*It helps to make mucus thinner and easier to expel. Â*That will help with those thick secretions. Â*If you are using it in conjunction with the Cough Assist, you would do the treatment before, then cough. Â*We have inquired about the Cough Assist for Jacob, but his pulmonologist doesn't like to use them with trachs (???). Â*When things settle down around here, I am going to make him an appointment w/another pulmo to discuss getting one.

Amanda