Gabriel Wehrle
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Gabriel is the preemie twin brother of Elliot. He was born at 29 4/7 weeks gestation on August 24 and though he was breathing on his own, was treated with surfactant and put on a ventilator along with his brother. After the first week, both boys were put on CPAP and Gabriel actually seemed to do a lot better than his brother Elliot who needed to go back to the ventilator for a few more days. After a few days on CPAP, Gabe pulled the nasal prong from his nose and stabbed himself in the head with it :-). He didn't really do much damage. The medical staff took this as a sign that he was ready to come off respiratory assistance. He then breathed on his own for a little over 24 hours when he had a serious episode of bradychardia and apnea. He was intubated again on Saturday September 4. Unfortunately, the episode turned out to have been triggered by aspiration of contents from Gabe's stomach. This precipitated pneumonia which was aggrivated by MRSA. After treatment with Vancomycin, and a few blood transfusions, Gabe seemed to have shaken the pneumonia in about two weeks time. After a week of rest, extubation attempts began on about September 21. Gabe did not respond well at all. He had severe strider and could not move enough air to survive off the ventilator. Furthermore, intubation was complicated by Gabe's now severely swollen vocal chords. Bronchoscopy around the 24th of September confirmed swollen vocal chords but did not reveal any structural problems. Gabe began steroid therapy to help his vocal chords to heal. By mid-October, Gabe had not successfully extubated nor had he gained significant weight for three weeks. Mom and dad were faced with the choice of continuing a long-term endotrachial intubation at the risk of stenosis and continued damage to his vocal chords or to proceed with tracheotomy. We chose tracheotomy. Gabe was circumcised, had hernia repair and underwent tracheotomy on October 13. He successfully came off the ventilator and began to breastfeed and gain weight on October 18. On October 21, he moved to a community hospital near home. Prognosis is that he will need the tracheostomy through the RSV season (until Spring) and then he should be able to tolerate decannulation. He has been ready to come home now since around Thanksgiving, but due to a severe shortage of nursing, we have been unable to retain home nursing support. At 100 days of age, Gabriel weighed 6 1/2 pounds and was doing great!
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Update - November 2000
Gabriel was born on August 24, 1999. He was a 29 week premie twin. He was vent dependant for the first few months of life until receiving his tracheostomy. Then, we fought to get him home in January of 2000. Once he was home he really began to thrive. Gabriel was formally diagnosed with Sub-glottic stenosis in March of 2000 during a bronchoscopy to determine possibility of decanulation. He requires laryngotracheoplasty to repair the stenosis. We will pursue that procedure in the spring of 2001. At the moment (14 months), he and his brother have more important things to worry about like learning to walk.
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Gabriel and his twin brother Elliot
Update - November 2001
Gabriel
had his LTR this summer on August 14, 2001. It was successful in that the repair went
well and Gabe's subglottic stenosis is resolved. The graft looks wonderful.
Gabe did well during recovery, although the MICU team at Boston Children's
Hospital had quite a time keeping him fully sedated and immobilized. There
were times when doctors would visit and Gabe was supposed to be out, but he
would look up and wave. The unfortunate news coming out of all this is that
Gabe failed extubation twice after the procedure. That means that his
beautiful ostomy-free neck and trachea had to undergo another tracheotomy on
August 22. After a long weekend of sedation and recovery from that
procedure, Gabe started to come out of his almost-two-week slumber. We
brought him back home on only Ativan on September 1. Then, Gabe continued
to wean from the Ativan for another month. Today, he is doing fine and is
back to normal. The current diagnosis is glottic edema. We feel that the
cause was irritation from the endo-tracheal tube used during Gabe's
recovery. We are praying hard that this will resolve itself without repair
over the coming months so that we can try to extubate in the Spring or
Summer of '02.
Update - July 2003: Gabe has been to Cincinnati a few times this spring. He is home now and has had CTR and LTR. The surgery went great even though a congenital defect was discovered (no posterior Cricoid or Thyroid cartilage). He is currently breathing through his mouth and nose for the first time in his life. He has a Montgomery Safe-T-Tube in place. Despite the T-Tube extending through his vocal chords, Gabe is attempting to speak and is already nicely approximating all kinds of words. This is a very exciting time for Gabe and our whole family.
Gabe will have the T-Tube through October. In November, Dr. Ian Jacobs at CHOP will remove it and replace a trach. From there, Gabe will hopefully downsize to decanulation in a week or so.
- New Photos July 2002
Update, January 2005: Lot's of great things have been happening in Gabe's life. He had his T-Tube out in November of 2003. He then made steady improvement through September of 2004. In February of 2004, Gabriel started wearing a Passy-Muir for the first time. Within months, he was able to speak very very intelligibly though he had never spoken before in his life. Gabe currently speaks with basically no
speech impairment whatsoever. He does have damaged vocal chords and a very raspy, thin voice. But, he is getting voice therapy for that.
In September, Gabriel was decannulated! ! ! He is doing very nicely. From the time of his
decannulation, he had constant stridor. It got quite bad at night, sounding much like the severe sample sounds you have on Aaron's pages. However, Gabe's sats and other vitals were fine.
In December, Gabe had his airway stretched by Dr. Jacobs of the Airway Center at CHOP. Dr. Jacobs used an angio-balloon and a very high dose of mytomicin to enlarge Gabe's airway and prevent scarring. This procedure meant a couple days on the vent at CHOP, but really knocked out a lot of the stridor. We will repeat the
procedure in April.
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This photo is right after I removed the trach.
As you can tell, Bunny was decannulated at the same time!
