The truth about home medical supply companies!
I have a lot to say about this topic...
When we were in the hospital I took it for granted that we had the supplies that we needed and everyone that works at the hospital is on the same page as to which supplies we need and how many are needed. I thought it would be the same at home.
We had our medical equipment company come out before Molly got home, the respiratory therapist came and looked at our home. He said we needed to get a dedicated circuit for molly's ventilator. We had our neighbor (a talented electrician) come install this the week before Molly came home. That is all that we talked about. He came back again to talk about the ventilator and bring us the supplies he thought we would need.
The knowledge that this company had about baby's on a ventilator was very small. Many of the basic things that you would think a medical equipment company should have, they did not. A few examples...
I feel that these companies are good when it comes to older people who have smaller respiratory problems, but when it comes to infants on ventilators and tracheostomies; they have much to learn. I have spoken to the manager about this at airway oxygen and hope they take this to heart.
If a company is working with someone like my daughter they should know a bit more about the equipment and what is needed!
My advice is to look around and ask others in your same situation what company they used in your area and if they thought that they were a knowledgable company.
I also notice that the companies in larger cities seem more equipped and knowledgable, maybe because they have seen more situations and know how to deal with them. If you have the choice between someplace farther away but in a larger city and a place that is close in a smaller area, go with the one in the larger city.
When we were in the hospital I took it for granted that we had the supplies that we needed and everyone that works at the hospital is on the same page as to which supplies we need and how many are needed. I thought it would be the same at home.
We had our medical equipment company come out before Molly got home, the respiratory therapist came and looked at our home. He said we needed to get a dedicated circuit for molly's ventilator. We had our neighbor (a talented electrician) come install this the week before Molly came home. That is all that we talked about. He came back again to talk about the ventilator and bring us the supplies he thought we would need.
The knowledge that this company had about baby's on a ventilator was very small. Many of the basic things that you would think a medical equipment company should have, they did not. A few examples...
- We need one bag of water to hang for the humidifier on the vent every 24 hours. That would mean we need about 30 bags of water per month. They gave us three bags of water for our monthly delivery. They did not know we needed that many... they thought three would do. When we said we were running out, they had a hard time finding water bags and had to drive to far away cities to get just a few at a time.
- Lets talk about humidifier systems on the vent. They gave us an old model heater, it is not powerful enough to work for a 24 hour a day working vent. Molly kept getting mucus plugs in her trach, we could not figure out why at the time, but it was the low functioning heater. We had 9 emergency trach changes in the first two weeks that we were home. We finally started to experiment with heaters, the third heater, the most updated model, finally did the trick. They probably should have known this info to start with!
- At the hospital, they told us we should not reuse a trach more then 3 times. I asked to get a new trach do to the fact that we had changed it so many times. I was explaining to my respiratory therapist what we needed. I explained and explained. I finally showed him molly's trach because he was not getting it. When I showed him the trach, he said."oh, that is not what an adult trach looks like, an adult trach has an inner canula,,," This made me really angry, I Feel that the man with the medical company that is over seeing my daughters trach equipment should know what her trach looks like!
- Lets discuss the trach care kits that we get at home. We do trach care on molly two times a day, in the morning and at night. It takes two people. We need trach ties, medical q-tips, 4 by 4 wipes, and soapy water. In the kit the trach tie is a floppy shoe string, the q-tips are not medical quality and the first time I tried to wipe molly's trach the fuzz came off in her trach! Each kit only came with one set of gloves and they would not provide extra gloves. These kits were made for adult use, not baby's. The brush for cleaning would never fit in an infant size trach either. The quality of the supplies was very poor. I was not impressed and have to put together my own supplies.
- It was very hard to change the number of any supply we needed or change the kind of item. I have called so many times, I can't count, I ask for different numbers of things, a different kind, or I ask to get a supply stopped because we do not need it. They are often unable to do this. We still have not gotten an order for the month that was correct.
- It took them 4 times before we received the correct trach in the mail. Our trach is a neonatal bavona, uncuffed flexstend, 4.0. We got a pediatric size instead of neonatal, then no flexstend the next time, then a 3.0 instead of a 4.0.
I feel that these companies are good when it comes to older people who have smaller respiratory problems, but when it comes to infants on ventilators and tracheostomies; they have much to learn. I have spoken to the manager about this at airway oxygen and hope they take this to heart.
If a company is working with someone like my daughter they should know a bit more about the equipment and what is needed!
My advice is to look around and ask others in your same situation what company they used in your area and if they thought that they were a knowledgable company.
I also notice that the companies in larger cities seem more equipped and knowledgable, maybe because they have seen more situations and know how to deal with them. If you have the choice between someplace farther away but in a larger city and a place that is close in a smaller area, go with the one in the larger city.
This picture is an example of how things at the hospital can look very different then things in home health equipment. On the left is something called a "nose" from Mott children's hospital. This is the piece that is put on the travel ventalator to use as a filter and to keep her humidified. On the right is airway oxygen version of a nose. It does work the same but just looks different. It is necessary to ask a lot of questions and make sure they are not giving adult pieces instead of pediatric or vice versa in some cases.
This is a picture of the home trach care kit that is really terrible from airway oxygen. We only use the gloves, 4x4 wipes and one pipe cleaner. Everything else either not appropriate for babies or bad quality.
This is Molly's ventilator, it is a trilogy 100. We had a trilogy 200 at the hospital. There seems to be very little difference in these two models, thankfully. The heater on the bottom is the item we had to switch several times in order to get enough humidity. Again, ask question and investigate and research when something is not working. We had to push them to get these heaters changed and upgraded.
This is the type of trach that Molly needs. I always double check to make sure it is exactly correct, because they have messed up the order many times and sent us the wrong trach. Never trust that they send the correct supply, always check right away so you have time to send things back and get what you need.
We had to use two company's. One for our feeding supplies and one for our trach supplies. U of M has actually done a good job of supplying the formula and ng/ g tube supplies. Airway has a little more to be desired as I mentioned before.