TrachKids.org

TrachKid Profile

William was born at 29 weeks gestation June 22, 2008. He weighed 3 lbs. 2.8 oz and was 15 in. long. He was a little jaundist, he was intibated for three days, then on the c-pap for a while and switched to room air in the incubator very soon, and before you know it, he was out in an open bassinette. He stayed in the NICU until he was 34 weeks. They sent him home with zantac, polyvisol, and an apnea monitor. Over all he progressed very well. He was on Neosure for quite sometime so he gained quite a bit of weight QUICKLY!!! He has met and surpassed his developmental milestones for his age and is doing quite well. Once the weather started change, we noticed that when he got sick he had a hard time breathing. So we took him to the doc, they put him on pulmicort and xopenex and we were fine for a while. Then he got sick again, they thought he had bronchiolitis and some stridor going on, we stayed in the hospital a week while they treated him with racemic epinephrine. and he was good for another month.Then in January we took him to the ER because he was having some issues with ihs breathing yet again, this time, they did all of these test, they tried the racemic again but that wasn't working as well, so they put him on heliox which worked great...they did a bronchioscope and noticed he had some swelling. Decided to give him some time to let the swelling go down, and then he went down for the rigid bronchoscope. Our doctor had told us it was a possibility that him being intibated could have left some scar tissue which causes him to struggle and have the bad retractions he has when he gets sick. He said once he was down, he would come out with the pictures to let us see what he had seen and to let us know if he would need to be trached or not. He came out maybe twenty minutes after they had been in the operating room, he needed to been trached. He had a narrow airway and some scar tissue from being intibated. He recommended that we get the tracheostomy, so we did. Seeing him with the tubes, the ventilator, his arms strapped to the side of the bed, it was a bit much for us to handle, but seeing him breathing peacefully and comfortable, it was amazing. They kept him sedated for an entire week. And then they woke him up, seeing him cry and not being able to hear anything BROKE MY HEART. But as the days progressed, it wasn't as bad. Today is Febuary 2, we have been in the hospital since June 6th. He is pretty much back to himself. He's playing like he was, today we went down to radiology and he did amazing on his swallow study. The doctor ordered that if he were able to take 2 oz by mouth in 20 minutes the feeding tube can come out. He took 4 oz and did amazingly well. And before we knew it, he had pulled his own feeding tube out of his nose...so no more feeding tube, hopefully for good!! They are still weaning him slowly off of the sedation drugs that the had him on, but once he takes one more step down off the volume, we can go home. We can hear him cough now a little, every now and then a little cooing, some burping, anything at this point is great to hear. Our ENT and pulmonologist think six months to year he will have the trach. He is seven months now, he won't remember any of this. This has been a roller coaster of emotions for all of us. It is truly by God's grace that we have overcome this all with smiles on all of our faces. Prayer truly changes any situation...

• Gender: Male
• Demographic Region: North America
• Siblings: None
• Medical Conditions: Reflux, Subglottic Stenosis, Preemie
• Ethnicity: AFRICAN AMERICAN

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Member for

3 years 14 weeks

Location

Country

United States

State/Province

Virginia