John had his appointment with his pulmonologist, Dr, Chavez, last Wednesday in Temple. We addressed his reoccurring apnea events. Also the increase of oxygen he needs, especially while he is sick. Dr. Chavez says we will be putting him on a vent at night while he is asleep. If he is sick then it will be continuous (24 hrs a day) until he is better.
For us to get John set-up on the vent Dr. Chavez needs to check with the PICU at McLane Children’s Hospital to see when they will have a room available within the next 3-4 weeks (possibly sooner). We’ll be looking at getting a ventilator called the Trilogy by Respironics. It’s newer, lighter, quieter, and a little more user-friendly. Dr. Chavez prefers to use those for children. However there is another type of vent called the LTV by CareFusion. It’s older, louder, and a bit more heavier, and looks like something used in the former Soviet Union. If for some reason the Trilogy doesn’t work out we’ll use the LTV.
Next Tuesday John will see a new speech therapist to hopefully help to get him to take formula by bottle again. His doctor wants him seen twice a week. It seems a bit excessive, but we’ll see.
Night Nurse Update:
Thank the Lord we found someone relatively quickly! She will be working Sunday – Thursday 10p – 6a starting on the 16th of November. That gives Thomas & I the much needed sleep we need.
We are still searching for a bigger place to live, but there are a lot of dynamics at play. Mostly lease and finances related. Also now with his equipment list and supplies growing we will be needing a larger vehicle. So please be in prayer for those. I know God will provide.
Most times when we go to the doctor (or any one of his specialists we see) it is like we take one step forward and three steps backward. I almost expect to walk away with some sort of new equipment, medicine, treatment plan, or hospital stay. If we do get to walk away with nothing, I count it as a good appointment because it is not another thing added to our already long list. It is just a struggle not knowing what to expect every time we go the doctors. There are days I just feel like I am on auto pilot because I know what to do and do not even give it a second thought. So please also pray for comfort and assistance to cope with everything for us as a family.
Learning to be happy and not worry is something that is hard but I am trying to work on. My husband wrote an awesome blog post which I think you should read and share. (READ: “How I Learned to Stop Worrying and Just Be Happy”) Deep down I know John will be ok. But what will be his “ok”? How much assistance will he truly need? Wheelchair? How long will his need for his g-button & trach really last? Yes doctors say hopefully only a few years, but they even admit at times they don’t know. At least he is getting the help he needs now. That is what I have to look at and recognize. The smiles, arms raising, snuggles, brothers playing with him, the way he pays attention to everything, etc..those are the moments I live for.
Back in September I had a fellow sister photographer and friend take some much needed family photos.
Vickie Ruiz has followed John’s journey from birth. She was more than willing to help accommodate in taking pictures with him. Vickie did an amazing job and the kids obviously loved her. Here’s her website: www.vickieruizphotography.com/
Finally, Thomas and I have been working on a project since May. It’s called www.247families.com and is dedicated to helping other families cope with the challenge of raising a “special needs” family member. Read through it and share with anyone who could use an extra boost. We’d also be more than happy to talk to them. Just give them my email address below.
That’s all for now!
Email me sometime!