We Found a Happy Medium for Chase's Breathing Assistance
Since Chase has been back at home, he’s been breathing unassisted and doing fine for the most part. However, while sleeping next to him last night (it was my rotation), he seemed to have some apnea incidences that were somewhat concerning. He would take a few shallow breaths and then stop for a few seconds (long enough to drop his O2 level about 10 pts) and then breath normally again. Of course, this situation means a terrible night of lost sleep for whoever is watching over Chase and listening for his pulse-ox in the background. This was enough of a concern for us to look into the options for better monitoring and breathing assistance options going forward.
Before Chase was discharged from the hospital earlier this week, we asked about options like using a BIPAP or a portable ventilator and monitor at home; however, the roadblock was that Beaumont didn’t have a pediatric home ventilation program. They kept pointing out the fact that with any of this kind of equipment, we would need a respiratory therapist and a Pulminologist to follow his case at home and provide the necessary ongoing support.
We finally found an agency (Advent) that specializes in this kind of service and they completely agreed that Chase would be an ideal candidate. They recommended the use of nocturnal ventilation to enable Chase’s body to get better rest and give us the benefit of the monitoring at night as well as ongoing assistance with proactive respiratory therapy in our home. We were told this should also reduce the stress on his heart and hopefully keep his heart-rate from fluctuating so much at night. This is exactly what we were trying to get in place, yet we couldn’t find anyone at the local hospital who knew how to go about it (without transferring our case to Detroit Children’s or U of M, which we didn’t want to do).
With enough persistence, we were able to get Beaumont to agree to allow Advent to manage our case at home, including setting us up with the equipment (ventilator with built-in BIPAP and all the necessary monitoring). The only catch was that they wanted to observe Chase utilizing this equipment for 24 hours before writing the order. Unfortunately, this meant having to get Chase admitted again for the night. We explained to him that we were only doing this so that we could avoid having further hospital stays in the future and so that he could get all the care he needs at home.
Well, so far so good – as I left the hospital tonight, Chase was doing great on the portable vent. He’s sleeping much more deeply and peacefully. This will also mean that Carol and I will be able to rest better, knowing that Chase is ok through the night. We are extremely grateful to have found this “happy medium” and hopefully everything will go well through the rest of the night so that Chase can be back home again tomorrow. Once they write the order (assuming everything goes according to plan), we’ll probably also be able to get more support with his care on a regular basis.
Clinically, Chase is also making good progress again. He’s responding more every day with limited movement of his fingers, toes, hands, etc and today he seemed to be able to open and move his right eye. We’re extremely excited to see each baby step in his recovery once again. He never ceases to amaze us with his courage and determination. We hope to see this continue through the weekend, leading up to the prayer service on Sunday, Sept 3rd at 3 pm.
Meg and Max Koss 6311 Walker Drive
Troy, MI 48085
mk3013@yahoo.com
megkoss@comcast.net
tel:
tel2:
mobile: (248)828-4419
(248)840-2433 Meg Cell
(248)709-1278 Max Cell
Want a signature like this?
In preparation for this service, we’re continuing to use the novena prayers www.padrepiodevotions.org/index.asp?pagename=prayers and http://www.latinmass.bravepages.com/infant_jesus_of_prague.htm While I was saying these prayers next to Chase today, I asked him if St. Padre Pio was praying with him and he responded – yes! Then I asked if Padre with him at night during his prayers and he again indicated yes (with a thumbs up). Some day, when Chase can communicate better, we’ll come to know the rest of the story...
Thanks again for all the prayers and support. Have a wonderful and safe holiday weekend and God Bless!
John & Carol Sammut
Chase & Barbara
Before Chase was discharged from the hospital earlier this week, we asked about options like using a BIPAP or a portable ventilator and monitor at home; however, the roadblock was that Beaumont didn’t have a pediatric home ventilation program. They kept pointing out the fact that with any of this kind of equipment, we would need a respiratory therapist and a Pulminologist to follow his case at home and provide the necessary ongoing support.
We finally found an agency (Advent) that specializes in this kind of service and they completely agreed that Chase would be an ideal candidate. They recommended the use of nocturnal ventilation to enable Chase’s body to get better rest and give us the benefit of the monitoring at night as well as ongoing assistance with proactive respiratory therapy in our home. We were told this should also reduce the stress on his heart and hopefully keep his heart-rate from fluctuating so much at night. This is exactly what we were trying to get in place, yet we couldn’t find anyone at the local hospital who knew how to go about it (without transferring our case to Detroit Children’s or U of M, which we didn’t want to do).
With enough persistence, we were able to get Beaumont to agree to allow Advent to manage our case at home, including setting us up with the equipment (ventilator with built-in BIPAP and all the necessary monitoring). The only catch was that they wanted to observe Chase utilizing this equipment for 24 hours before writing the order. Unfortunately, this meant having to get Chase admitted again for the night. We explained to him that we were only doing this so that we could avoid having further hospital stays in the future and so that he could get all the care he needs at home.
Well, so far so good – as I left the hospital tonight, Chase was doing great on the portable vent. He’s sleeping much more deeply and peacefully. This will also mean that Carol and I will be able to rest better, knowing that Chase is ok through the night. We are extremely grateful to have found this “happy medium” and hopefully everything will go well through the rest of the night so that Chase can be back home again tomorrow. Once they write the order (assuming everything goes according to plan), we’ll probably also be able to get more support with his care on a regular basis.
Clinically, Chase is also making good progress again. He’s responding more every day with limited movement of his fingers, toes, hands, etc and today he seemed to be able to open and move his right eye. We’re extremely excited to see each baby step in his recovery once again. He never ceases to amaze us with his courage and determination. We hope to see this continue through the weekend, leading up to the prayer service on Sunday, Sept 3rd at 3 pm.
Meg and Max Koss 6311 Walker Drive
Troy, MI 48085
mk3013@yahoo.com
megkoss@comcast.net
tel:
tel2:
mobile: (248)828-4419
(248)840-2433 Meg Cell
(248)709-1278 Max Cell
Want a signature like this?
In preparation for this service, we’re continuing to use the novena prayers www.padrepiodevotions.org/index.asp?pagename=prayers and http://www.latinmass.bravepages.com/infant_jesus_of_prague.htm While I was saying these prayers next to Chase today, I asked him if St. Padre Pio was praying with him and he responded – yes! Then I asked if Padre with him at night during his prayers and he again indicated yes (with a thumbs up). Some day, when Chase can communicate better, we’ll come to know the rest of the story...
Thanks again for all the prayers and support. Have a wonderful and safe holiday weekend and God Bless!
John & Carol Sammut
Chase & Barbara
posted by John & Carol Sammut at 8:47 PM
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