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Jacob’s Journey / Day 45
June 14, 2024 Jacob had his breathing tube removed Tuesday afternoon. He has responded very well to being off the tube. He was put on a constant ventilator for 24 hrs. Jacob’s stats looked great. Then on Wednesday, we got Jacob into his Wheelchair and introduced a sip ventilator. It’s like a straw with air.…
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Jacob’s Journey / Day 41
June 10, 2024 Tracy & I are on this roller coaster ride with Jacob. Our realization (new normal) has set in about Jacob’s trajectory with a tracheotomy. Sunday Jake was pretty sad, scared, and anxious about the impending tracheotomy. We pray for his voice and eating by mouth, but we just don’t know what will…
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Jacob’s Journey / Day 37
June 6, 2024 On Monday morning Jacob had extubation (breathing tube removed). His stats looked like they were increasing well for the first 56 hours. He was smiling and cheerful. But as we have mentioned at any time he could “DeStat” (lower stats). At 6 pm Wednesday night, Jacob started getting lower on his stats.…
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Jacob’s Journey / Day 35
June 4, 2024 I am struggling to find words… These updates are important but difficult to actually put down “on paper.” Yesterday we were hopeful for a successful extubation (removal of feeding tube). Jacob’s numbers looked good for the preceding 3 days for a second extubation attempt. At 11 am they extubated Jacob. Jacob was…
As you may know Jacob Jarvis has Duchenne Muscular Dystrophy (DMD). DMD is a muscle wasting disease.
At first boys with DMD begin to lose strength in major muscle groups such as legs and lose ambulation (ability to walk) in the early teen years. But all our organs (Heart, Lungs, Kidney’s, etc) are muscles too and lose strength over time as well. This means that breathing becomes more difficult, Heart pumps get weaker over time, arms get weaker, and in general the entire body gets weaker.
Jacob began this latest medical hospitalization on May 1 with difficulty breathing. He first went to the ER but was transferred to the PICU at Nationwide Childrens.
Through testing it was revealed that Jacob had Pneumonia in his right lung.
3 days later saturday night Jacob’s right lung collapsed as did most of bodily stats (HR, PulseOxy, BP). The alarms went off and caused a rush of doctors and medical professionals to flood the room with all kinds of medical care. After Jacob was stabilized the medical staff intubated (inserted a breathing tube) Jacob along with a feeding tube. From that trauma Jacob’s body needed extra support and care. Since Intubated Jacob could not talk since the vocal cords were impeded.
Over the next 6 days Jacob respiratory stats slowly increased.
Jacob did have a few medical hiccups (irregular heart rates, low BP, etc..) along the way but started healing.
On Monday May 20th in the morning Jacob was extubated (Breathing tube removed) and began breathing using a Bi-Pap mask.
But late Monday night Jacob’s breathing became stressed. Medical staff tried several different measures to keeps Jacob breathing going. But after 2-3 hours of unsuccessfully helping Jacob breath, it was decided to re-intubate him. Basically 18 hours later he was back on the breathing tube.
Thursday May 23 it was determined that Jacob needed support of his regular Neuromuscular team at Cincinnati Children’s Hospital. On Saturday morning Jacob was Flown from Columbus to Cincinnati.
Jacob’s hospital journey still continues and while we do know how Jacob will heal, we have be told this process could continue for 4-8 weeks or longer. Meaning Jacob could be in hospitals for months healing…