to: hlhs@tchin.com, hlhs@spruce.libertynet.org, pdheart@tchin.org, chdwebring@egroups.com, kdswhrt@execpc.com, discussion@lhm.org.uk
subject: Jaedin's Glenn Operation / Home for Christmas!

We've been receiving mail from the listservs for quite some time now, but we thought we'd take this opportunity to post our first message to the whole group. We just wanted to pass on some good news - after a week of recovery from the bidirectional Glenn operation, we were able to take our son Jaedin (13 mo., HLHS) home in time for Christmas. What a wonderful Christmas present! This is actually deja vu for us, since last year we were also lucky enough to take Jaedin home from the hospital on Christmas Eve after his recovery from the Norwood operation. It's been quite a year for him, and we've enjoyed reading the posts from all of you - it helps us to anticipate what lies ahead for us, and we feel like there are many others with us every step of the way.

Jaedin's Glenn surgery had been rescheduled a number of times due to potential viral infections and other complications. So it was hard to accept that this surgery was actually going to happen until we actually saw him off to the OR at Seattle Children's. The operation itself went without any major complications, but you all know how time seems to stand still while they're on bypass. The recovery as well had no big hangups, but by the end of the week they were running out of places for the IV's. In some ways it seems all the pokes and prods during recovery are even harder for us parents to deal with than the actual surgery, since you're right there witnessing the pain without being able to do much to soothe it. He caught the white-coat-phobia pretty bad this time, so now that we have him home, we can only hope that his memory fades quickly. His chest doesn’t seem to be bothering him at all, but he seems much less trusting of strangers and pretty irritable. We've been geared up for this phase by some of the other post-Glenn posts we've read, and hope that it passes quickly so that we can have our happy flirtatious little boy back with us soon. We'll keep posting updates of his recovery on his webpage along with photos, past updates and other links.

Please excuse the length of the following section, but here are a couple of specific topics we’ve seen in past listserv postings that might be of interest to some in the group:

* Altitude/Flying
* Congestion/Congestive Heart Failure
* More Kids
* Speech Therapy
* RSV Vaccine

* Altitude/Flying:

We’ve flown with Jaedin a few times now - the first time it was a very hard decision to make. Since every child reacts to altitude differently, how are you supposed to know if it's going to be ok? We're at sea level in Seattle, and we decided to take him on a 2-hour flight to Salt Lake City (el. 5000 ft) to visit family. Our cardiologist thought it would be fine, but first we checked with the airlines to make sure they had supplemental oxygen in case of emergency. Several of the airlines we called do not allow people who "knowingly require oxygen" to fly, and told us they didn't carry any supplemental oxygen on board (other than the overhead oxygen masks) in an apparent attempt to avoid potential problems with delays and liability. It turns out that virtually every passenger jet is required to carry on-board oxygen, but you have to talk to the supervisors' supervisors to get them to admit it (we did find a few other airlines who would allow you to rent an oxygen tank from them to carry with you.) By the time we decided to go ahead with the flight we had already aroused the suspicion of the airline, and they wouldn't let us fly without a carefully-worded doctor's note stating that Jaedin did not "knowingly require" oxygen (whether or not requiring standby oxygen counts as "knowingly requiring oxygen" is up to interpretation.) So anyway, normally Jaedin's sats run around 75. We have an oxygen sat meter, and we kept the monitor on him during the entire flight. It's our understanding that passenger jets are generally pressurized to a point corresponding to atmospheric pressures at about 8000 ft elevation. As we climbed to cruising altitude after takeoff, his sat level started to drop - we started worrying when it got down to around 60, but it luckily it leveled off there. By the time we landed, it was back up to 75 and remained there throughout our time in Utah - and on the return flight, there was no dip at all. Anyway, take that for what it's worth, since every child reacts differently, but we hope that’s useful to those who may be contemplating flying with your children for the first time.

* Congestion/Congestive Heart Failure:

In March of last year, Jaedin caught a cold and we were back in the hospital for a while making sure it wasn't RSV. We were released after a week, but the congestion kept up for months. When we went in before his angioplasty (in preparation for the Glenn operation) a few months later, they said they would have to postpone the surgery until he got over the congestion. Finally, some tests showed that the congestion was not a result of any virus at all, but that it was the beginning of congestive heart failure. It turns out the hole from the first atrial septectomy for the Norwood operation (at 6 days) had been closing up and was causing the congestion. We had to go in right away for an emergency septectomy - unfortunately, the veins were blocked because of earlier procedures. As a result, it couldn't be done through catheterization, so it turned into an additional open-heart operation for Jaedin. We’d be interested to hear if anyone else has had similar experiences. The moral of this story is to beware of extended congestion.

* More Kids:

I’m sure everyone has heard about the increased risks of having a second CHD child (1% for first CHD child for the general population, up to 4% for the second once you've had one) - we talked it over and decided that it is a risk worth taking. We are expecting again and were very relieved last week to have a detailed sonogram show a perfectly healthy heart. Anyone else have experience with a close younger sibling to an HLHS child? Jaedin and his new little brother will only be about fifteen months apart, and we’re a little concerned that there will be some social issues if Jaedin’s kid brother is able to show him up in sports or just plain outgrows him. We're hoping that the whole thing just makes them closer and helps them stick up for each other more.

* Speech Therapy:

A lot of posts we've seen from the listservs have mentioned speech therapy. Just wondering if that’s something that’s related to some of the CHD’s in a way or if it results from separate conditions. We're curious if there is something about the treatment, conditions, etc. that impairs speech development - we're guessing it's extended hospital stays with breathing tubes in, but we'd like to find out more about it.

* RSV:

Last year we participated in the synagis clinic at Childrens for RSV vaccinations. Apparently the FDA has not granted final approval for heart babies, but there are a few study groups participating to monitor the effectiveness. We were lucky enough to get insurance approval for it, but the process took so long that we were only able to get him a couple of quick doses toward the end of the flu season. We thought it had been ineffective because it seemed like Jaedin had caught something pretty serious, but as we mentioned above, his congestion was unrelated to a virus. If we can get the paperwork cleared up for this season, we'll be getting the shots once a month again throughout the coming RSV season. We haven't seen very many posts about RSV yet this season, but we'd be interested in hearing if anyone else is trying the shots and your impressions of their effectiveness.

Well, we have a ton of people to thank this holiday season - especially the medical teams at Seattle Children's and elsewhere who perform miracles on these tiny hearts. Also everyone who extended their kind hands to us during our hospital stay. We were impressed by the number of volunteers trying to bring some holiday happiness to all of the patients. God bless all those who go about their lives seeking out opportunities to help others. We have read some sad news in some of the posts, and at this time we think especially of those who have experienced losses, who may be going through their first holidays without their loved ones. It seems ironic that the sorrow felt through the bad news and the joy that is felt through the good news shared in these mail groups both seem to strengthen this diverse family. God bless all of you this Christmas. Keep sharing and caring, and we'll all meet someday in a huge reunion. Well, that's it for now - wishing everyone a great holiday season!

Krey & Lindy Price

Parents to Jaedin (13 mo. HLHS) & his new little brother (0 minus 2 mo.)

Join me on 2/14/2000 in remembering the over 1 million people affected by CHD on "A Day for Hearts: Congenital Heart Defect Awareness Day!"