Blom tracheostomy with Trilogy 100 ventilator

[mattb]

I wanted to blog about my dad and his recent surgery to get a trach and begin full time invasive ventilation. Prior to surgery he was on BiPAP 22+ hours a day with good use of his arms and hands, able to walk short distances with a cane or walker. Breathing was his biggest problem and he went against his original decision not to get a trach hoping he would simply be trading the "Top Gun" mask for a small button in his neck. We did extensive research on tracheostomy tubes, suctioning requirements, devices and speaking options. Our ENT who specializes in voice and swallowing (fellowship trained laryngologist) recommended the Blom system which is really head and shoulders above other options. The built-in subglotic suction and the speaking cannula (without cuff deflation) make this a superior product. A big problem is that it is not common, so RTs, Drs, and nurses are not familiar with it, and most hospitals do not stock it. If you request it and get it (like we did) be prepared to train everyone on how it works and also be sure to make them order a back-up for you and lots or extra suction and speaking cannulas. The set only comes with one each.

Now for our experience and the drama that followed. The surgery went very well and the ENT surgeon who performed the surgery folded the neck skin on itself and stitched it directly to the trachea which made the stoma clean and well formed from day one. Dad had minimal discomfort from the surgery but was having a very hard time adjusting to the hospital vent volume and rhythm. He kept trying to breathe in front of the vent and would often get panic attacks when he felt like we was not getting enough air. The ICU staff would give him Ativan and bump his Oxygen percentage and things would settle down. We continued to have trouble keeping his o2 stats above 90% without oxygen. Before we knew it dad was on 100% oxygen all the time and still asking for more air. 3 days after surgery a chest x-ray revealed that dad had pneumonia in his lungs and he could not be transitioned to his home vent until it cleared up. Over the next 4 days he got breathing treatments and antibiotics while the staff attempted to wean him from 100% oxygen to room air (21%). He was progressing well, but got stuck between 50-60% o2. The Pulmonologist performed a bronchoscopy which basically scoped dad's lungs while flushing and suctioning thick mucus as he found it. He also ordered bag hyper inflation of dad's lungs with saline added before suctioning twice per day. This did the trick. Dad was weaned from Oxygen and ready to transition to his home vent in two more days. The transition to the Trilogy 100 (which was the same vent he used for BiPAP) went even better than we hoped. Dad's breathing was so much easier on the Trilogy than the hospital vent. I am not sure if it was familiar, or new settings or what it was, but he seemed to be much more natural and relaxed. He spent another full night on his home ventilator and then he would be ready to be released. He used his Blom speaking cannula successfully, but his voice was a bit breathy and he had to catch the exhale, which he wasn't very good at doing. The inner cannula with built in subglotic suction worked great and prevented dad from needing deep suction very often (2-4x per day). Unfortunately, the antibiotics gave dad a bad case of diarrhea which had him going to the bathroom every 15 minutes. He had spent 14 days in the hospital and was ready to go home. They released him with his home vent and diarrhea which was a mistake. Upon returning home he spent most of his time in the bathroom and his stats were starting to drop, which resulted in a familiar air starved panic, which resulted in more suctioning, eventually bag ventilation with oxygen while waiting for an ambulance to take him back to the hospital on New Years Eve :sad:

It was determined that dad's home ventilator was malfunctioning. We later found that the problem was caused by the HME (an inline filter designed to moisturize air), we did not remove it when we hooked his humidifier up to the Trilogy 100 and it got saturated and severely restricted airflow. This is a BIG NO-NO that we were never told about.

Dad will stay in the hospital for a few more days until his diarrhea clears up, but he seems to be doing very well on his home vent and should be released soon.

We read so many different things about getting a trach and vent that we were not sure what to expect. We are now 17 days in and finally feel like dad can return home (my sisters home) comfortably and with a manageable care situation. The suctioning is easy to deal with, the "not enough air and low blood o2 levels" are hard. Hopefully the hard part is behind us.

I hope you enjoyed reading this very long post. There were a few moments where I thought the trach may have been a mistake, but ultimately, I think it will allow my dad to relax and let go a little bit each day until he is ready to enter eternity with our Lord.

 

[John1]

Thanks Matt for a thorough description of your Dad's experience and exposing many of us to a new type of ventilator. Best wishes to your dad.

 

[Barbie]

Wow Matt, what an ordeal--but glad it all worked out. keep us posted!

 

[Mar51]

Thanks, Matt. Your post was very informative and insightful. Please continue to give updates. Your dad is a very brave man. My breathing is getting rough, and I am very interested in a trache.

Take care and God bless,
Mary Ellen

 

[mattb]

Thought I'd post an update on my dad.

He is still in an LTAC facility which is basically a small hospital that allows ventilator patients to have regular rooms. In most hospitals they require you to stay in the ICU even if you are stable on a home ventilator. My dad has regained some strength now that his lungs are clear and he is respirating properly on a consistent basis. We had to submit two appeals to the insurance company to get him approved for 14 days at the LTAC before transitioning home. So far we have achieved all of our goals of care (routines for hygiene, feedings, suctioning, ventilator settings, power mobility, transfers, bowel regularity) except speaking with the trach and home vent. This has proven to be more difficult than we expected. My dad has a one circuit Trilogy 100 ventilator and has a Blum tracheostomy tube with a suction inner cannula for normal use, and a special speaking cannula for speaking. The Blum speaking cannula does not require cuff deflation for use like the Passy Muir valve, so patients are not supposed to lose air on inspiration and should get all of the exhale air across the cords for voice. Unfortunately, this has not been an easy task and nobody in Louisiana is familiar with how to make this thing work. Many are trying and we are thankful for their efforts. There always seems to be a different problem preventing us from being happy with this product. Sometimes o2 sats drop, other times there is no voice, sometimes alarms go nuts on the ventilator, sometimes air leaks from the stoma, sometimes phlegm build up and makes voice should like it is under water. All of these problems seem to be overcome-able if only we could get all of the players to work together. Hence the problem ~to make this work the vent manufacturer/ DME RT, RT from trach speaking cannula manufacturer, PULMONOLOGIST who needs to prescribe or approve adjustments to settings, and the caregiver all need to work together to tweak the settings without exhausting or sending the PAL into distress. We have not been able to get this done so far, and for now we have given up on speaking in order to focus on getting dad released to home. We are considering switching from Blom to Passy just to get more people helping with experience. The Blom is so new and rare nobody knows what settings work best. My dad is on AVAPS (average volume assured pressure support) ventilation which means the patient initiates the breath and the ventilator is smart enough to give whatever he needs. Apparently this is not an ideal setting for speaking especially if you use one circuit to inhale and exhale. We have tried volume and pressure ventilation with some short term success, but my dad can never seem to get his breathing in sync with the vent and speaking makes it worse. So we switched to a dual circuit which allowed him to stay on the AVAPS setting, but it kept causing alarms to sound which would cause RTs to start messing with the settings which would then send my dad into distress.

If and when we figure this out I will post the magic formula. We are considering a new ventilator, new trach, or both. What we really need is an expert who has helped someone get this working before and knows how to adjust all of the variables to make it work consistently and teach troubleshooting techniques to the CALS. I have looked high and low for that person, but have yet to find them. Maybe it will be me one day. I suspect a quality long standing multi-specialty program would be our best resource, but we don't have one of those either. The one that we have is fairly young, and there is little encouragement for those who choose life and opt for a ventilator (Pulmonologist excluded, who is Top Notch in compassion and encouragement, but slow to adopt/learn new technology).

In spite of all of this we have a lot to be thankful for and dad has been remarkably positive and happy that he chose to be alive. I love him and am very happy to carry on down whatever path this disease takes us. Hope this very long update helps someone.