Well hello!! We are enjoying our summer and taking many opportunities to relax and enjoy life! We hope you're doing the same!!!
I thought it would be time to write about Joshua and where we are with him. I am sorry for not keeping everyone up to date. Sometimes we just like to do life without talking about medical junk everyday!
The first new thing is that he started oxygen therapy this spring. Oxygen is the best vasodilator there is so we're hoping it helps keep things open for him and helps to make him feel better overall. It was strange for me to have the oxygen tanks and concentrator in our house. It seemed to make it more "real" that we have medical needs in our house. Now the sound of the concentrator relaxes me!! In the beginning he was wearing it everyday and night but then he started having his nose bleeds again. :-( The O2 is humidified but it still dries him out. Now he wears a saline gel in his nostrils and that seems to help most of the time.
The next new thing is that his legs have been getting tired while working his job at Publix and his veins have been quite large and bulging. So just this month he has started wearing compression stockings to work to hopefully help with that! The first time he tried to get them on I hear yelling across the house, "MOM!!! Help me!!!" Can I just say it was quite the experience helping to put "stockings" on my son!! Those suckers do not have any give so it was very difficult!! They are not stretchy like pantyhose!! Needless to say, he put a hole in them before I even got there!! Sheesh!! I'm happy to say he can now put those on all by himself!!! Whew! They do make his legs look like prosthetic's though!
The most current news is that he may be having surgery soon. We saw a sleep specialist regarding options for CPAP therapy. Joshua has not been successful with CPAP. He takes it off at night while sleeping, when he would even wear it. Since he is a stomach sleeper and mouth breather, it made it very hard for him to sleep. So... we met with the sleep doctor and she was quite concerned with the structure of his jaw. She said the lower jaw is set too far back which is probably what is causing the obstructing at night. She thinks that when the jaw and muscles and tissues relax when sleeping, they are collapsing his wind pipe. His most recent sleep study had 144 episodes where he stops breathing at night! This is also why he can't stay awake if he's not standing or moving. He stood up thru the entire visit just so he wouldn't fall asleep! My poor boy!! So... she referred us to a maxillofacial surgeon!!
WHEW! Are you still reading???
Well... we met with the surgeon this week and he recommends surgery to correct the jaw placement and braces to align his teeth! I am so thankful we did not follow the recommendation of our old orthodontist who wanted to pull teeth from the upper jaw and match it to the lower jaw!! (See... me being a pain in the butt pays off sometimes!!!) We've always known he has an overbite but I never thought it was more than a cosmetic issue.
We are waiting for the doctors to all talk to each other and then see if his cardiologist says he is able to have surgery at all. We were told last year that he was not a surgical candidate when they wanted to take out the tonsils. He has since told us that he thinks Joshua is stable enough to look into that again. I wonder if it makes a difference that it's jaw surgery and not just tonsils? They would probably do both at the same time. When I asked the surgeon if he's ever done this surgery on a patient with PAH, he said no. Then I asked if he was confident that his anesthesiology team was capable of doing this he said he would be meeting with them to discuss it. I let him know that I need him to wake up afterwards!!! I'm willing to bet that he does too!! :-)
Now... the last news is that in order for Joshua to have this surgery, he will need to gain between 10-20 pounds in the next few months!! I have been pleased that he has maintained his weight (at a whopping 113 pounds) for the last year. However, this surgery has an average weight loss of 15-20 pounds so he cannot afford to lose that without gaining it first!
So.... if you think about us, please pray that upcoming decisions we have to make will be the RIGHT one's, that things will move easily with insurance and information exchanged between doctors, and that we can plump that boy up!!!!! I am pretty sure it's going to be a family affair!!!
Thanks for reading!!!!!! Have a joy-filled day!!!!
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