Wyatt Bolan
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Wyatt was born May 13, 1998. He weighed in at 10lbs 5oz and was 22inches long. On Saturday June 13, 1998 I noticed that he was having trouble nursing. I phoned the doctor and he said that it may just be congestion and to use some saline drops in his nose. We did this and he seemed to do better. We even went to the local fair on Sunday. Well, Sunday night did not go as well and on Monday I noticed a fair amount of wheezing. I took him into the doctors and said "I'm just here for you to check him and say normal newborn stuff, he'll be okay in a few days." The doctor (Dr. Linda Eldred) looked at me and said, "I will make a call to see what we are going to do with him." I was shocked. She then sent us to the PICU at Sutter Memorial in Sacramento, California, an hour away. They monitored him overnight and in the morning did a bronchoscopy. At that time he was diagnosed with the subglottic hemangioma. The ENT (Dr. David Evans) came in and he was trached at 3:00pm on June 16. We knew instantly in the recovery room that it was the right decision for him. He was so peaceful and his color was much better.
We then spent the next 7 weeks in the hospital because setting up home nursing seemed impossible. There is such a shortage of nurses and the pulmonologist (Dr. Bradley Chipps) said that he couldn't go home without it. Well, 7weeks to the day we had all the nursing care set up and Wyatt came home. He is now 14 months old and has had a fairly healthy time of it. Minor infections of the trach seems to be the worst. Although, when he does get an infection, he always has tracheal bleeding. I was quite alarmed with that aspect. Not quite like a runny nose.
Anyway, we are looking forward to decannulation some day. I am hoping that the trach doesn't cause any harm to his airway. They have said that the hemangioma should involute by the time he is 2. I am finding in this web-site that this may be wishful thinking. In the mean time, they bronch him every 4 months to see how it's doing and they laser it very lightly.
Your website has been a god-send. I found it back in February and am just now joining in. I want you to know how much you have touched our lives. If I had had access to this site back when Wyatt was trached, it would have helped immensely. I told our doctors about it, so I am hoping they visit the site also.
Just a little note about care in California. They have special programs for children with these problems. While we were in the hospital, we applied for all of them but were told that we didn't qualify due to the fact that either we had an HMO (and they are supposed to cover everything) or our income level was to high. Well, just when we were very discouraged, we found out about a program that looks at Wyatt only and pays for everything our insurance doesn't. It's called EPSDT and is through the California Medi-Cal program. Wyatt is classified as Pediatric Acute care and qualifies for up to 16 hours per day. We don't use that much. Only what we need, but if we can staff it the hours are available.
Update: May 2001 - Wyatt has been decannulated. Yahoo!
