So update on Austin's medical issues:
For those who do not know, Austin has been diagnosed with Spastic Quadriplegic Cerebral Palsy, HIE, Laryngomolacia, Tracheomalacia, high muscle tone, global delays, failure to thrive, G/J tube placement, Plyoric Stenosis, Complex Epilepsy (including Infantile Spasms), GERD and a few other medical issues. Sometimes typing them all up I always miss something.
With Austin's complex medical history there is always something that could come up along the way. Austin cannot take anything my mouth because he aspirates (could go down to his lungs) since he cannot protect his airway. So with him throwing up he can aspirate even more! So back on April 18th we went into a scope so we could do the surgery called a Nissen (to help with the throwing up!) and he came out of it with a temp of 104.5 and oxygen level of 85%. Even with all his medical issues he has ALWAYS been a 100% or 99% for oxygen level!
I didn't get to see my son until 2.5 hours after they had promised. I was worried, confused, and sadden when they had told me. This was the second time he had a hard time coming off of anesthesia so it got me worried about him. I was in tears as they were running test after test on my poor little baby. We found out after getting admitted he had gotten pneumonia and RSV. Normally, if you have RSV it can cause pneumonia but after a lot of test they found out that it was bacterial pneumonia. SO he was put on antibiotics for that and of course had been on oxygen. He stayed in the hospital for 5 days. So with big aspirations it can cause pneumonia, it's part of his life we have to over come and keep trying to make him as healthy as we can.
So we got a referral in the hospital for ENT (ear, nose, and throat doctor) to come visit. Things looked good on their part but on the Pulmonary aspect things didn't look so hot. Since he cannot protect his air way we have to talk with them to make sure that we do all we can to help with the small aspirations so perhaps we can prevent pneumonia as much as we can. So the pulmonary doctor asked about family history of breathing issues which was a laugh since we have family history of emphysema.
So at the end she had decided on an steroid inhaler given, 2 puffs, twice a day for him. This will help protect his lungs and in the long term keep him out of the hospital. So let's help it works. On other news since he got out of the hospital April 22nd he had pooped 7/8 times in a month so we went into the hospital again for a 1 day stay. Which he was so backed up it was coming out of his g tube site.:( Poor guy! He can't win. SO now he's on medicine to make sure he stays regular. It's a pain in the butt to give to him but it's worth it. The clean up does suck though! So there is an update on Austin. We got more medical appointments coming up including physical medicine, neuro, and ophthalmology next week so THAT will be an interesting time that I will update you guys all up. Next week we are schedule for 7 appointments in 1 week so I'm not looking forward to it!
Wednesday, June 13, 2012
So as I was thinking about this post and sitting here typing I tend re-write something about a 100 times before I'm purely satisfied about what I had written. In these days I have people tell me all the time that they think that I do amazing from the updates that I put up on Facebook and how much they enjoyed reading them. Whether it be family, friends, people from Cafemom or church I'm glad I am able to share my families life with you guys.
I'm just a mom who is trying to do what is best for my family, isn't that what you are doing as well? All we do in life is making sure that we do what is best for our family and just make sure they are happy. As a mother and a wife I do this, every single day, and some days are harder than others. I'll admit with the average of 3 hours of sleep I get a night is hard to take. 6 days a week this is about my average and I know I need help. I'll be the first to admit that there is somethings I cannot do on my own. I've done my part to try to get our case for a nurse going but it seems like there are some more issues going on that I may realize.
I know things are ran by the government and our insurance companies but there is only so much things one person can handle. This month is our busy month, with 14 appointments, 4 medicine pick ups, 1 formula pick up and 3 home visits. It's hard to do it all and run a business. But guess what? My husband and I are doing it.
If you would like to judge me for asking for help, than that's fine! I've had a lot of people who have never been in my place try to judge me about the need for help with Austin. The last time my husband and I were out on our own together was November 2011. It's sad, but true. We had been trying to do it every month but with how things are going and us not being able to leave Austin it's not our fault. We have family who can help us and they do help us but for us taking care of our kids are number 1. Though me being around the kids 24/7 is hard, but I get to be the one to raise them, not have someone else raise them. Not come home tired from work and not being able to play with them (not saying this is everyone). I just remember when I was working, I'd come home and be so tired I didn't want to do anything. I'd be grumpy.
Now I get to spend all the time I can with my kids and be the best mother, home with them, and them enjoying me while they are out of school. 2013 will change things when they BOTH go to school. I'm excited, scared, and worried about it but that is because they've been with me. I have NEVER been away from Austin more than 8 hours and that's when I was working outside of the house for a few months before they downgraded their staff. I couldn't imagine having someone else take care of him all the time. So I know even when we have a nurse come in (my cousin) it's going to be hard for me to adjust! I do need help. But I do not want someone else to do my job for me. I have hard enough time letting my husband take over.
Perhaps it's the control freak in me.
That is all about this ramble, now to move onto others.