- September 2011- William had been doing so well, that he no longer was needing his ventilator for breathing as of late August 2011. He is just doing so great. As of late August, we had a follow up appointment with our PCH pulmonologist, Dr. Woodward scheduled for September 26, 2011. Since we had stopped utilizing Vent Support for William at home, I wanted Pulm to see William sooner than 9-26 since he had some wonderful changes in his health- he was breathing on his own, and not requiring oxygen. When I called the clinic, they were fully booked and busy and could not see William until our pre-arranged follow up on 9-26. At that time, our Pulm nurse got orders from Dr. Woodward and over the phone she told me that Dr. Woodward recommended letting William sprint for 5 minutes, twice daily. (Sprinting means breathing on his own, without the vent). I kindof laughed, and said OK! Meanwhile, William was breathing great on his own- other than me monitoring his CO2 levels, I felt he was breathing like a champ, saturating beautifully, and being the tough little man that he is- breathing on his own with NO vent support. SO 9-26 finally came rolling around the corner, and we had our PCH Pulm follow up. At that visit, I wanted to address William's new needs and I also wanted to inquire about a Ventilator called a Trilogy 100 as we were using an ancient dinosaur vent called an LTV 1000. Great vent, as it helped my child to breath- but the Trilogy was so much more technologically advanced. SO When I seen Dr. Woodward, who has a somewhat dull approach, seemed pleased that William was not requiring his vent, but he did do a short CO2 End-Title test while we were in the office and William's CO2 while ASLEEP was on the high end of normal. SO Dr. Woodward recommended at that point that William would benefit from being vented at night only, to help lower those CO2's. OK, so fine, we can do that. SO I asked about the Trilogy, and with no question he put in an order for the Luxurious Trilogy 100. A week later, we got our Trilogy 100. Our LTV 1000 was very loud, bulky weighing 17lbs with a travel battery that weighed 35lbs making it a total of 50lbs of vent equipment to lug around each time we left the house. At night, it was so loud, and the beeps were so annoying. Awe, it was a nightmare dealing with that old bastard. The new Trilogy 100 vent is virtually silent, and so much more gentle on William. SO much nicer to deal with, so luxurious in the world of being a Vent Mommie.
- October 2011- On 9-30 William got a little fever. Since he has a Broviac (Central Line IV) that is a High risk, HUGE risk for infection- each time he gets a fever we HAVE to go to the ED and get blood drawn to check for a potential line infection. UNFORTUNATELY on 9-30 when William got his fever, his blood work identified a line infection. We manage William's Broviac with such sterile care, it was a huge shock, and disappointment to us. We take such pride, and extra special care to manage all of William's special health care needs, and we keep him so clean so that he doesn't get infections. Our medical team encouraged us to keep doing what we are doing, and to continue being extra mindful about the Broviac line care. WIlliam was admitted for treatment of IV antibiotics, and observation until 10-5. We discharged with IV antibiotics and William was doing great. On 10-11 Richie got an opportunity to take a job in ARIZONA! He had been working in California for nearly 2 years, and to work in Arizona again would be awesome! The job was in Williams, AZ near the Grand Canyon. On 10/15- Isabell got in the truck with Richie, and I loaded William up in my tahoe, and we followed Richie while he was towing our RV to Williams. This was our William's first time out of Phoenix! We were going up to help Daddy set up, and I had to come back home with the kids on 10/16. We all had a great time on our outing to Williams. With the elevation change, William was needing 3LPM of Oxygen- and I fired up the vent for safety precautions. I wanted to make sure he was tolerating tghe elevation change. On Sunday 10/16 Richie had his first day of work, but the kids and I noticed that the Grand Canyon Railway was doing a Pumpkin Patch train ride. It was a for Halloween, and they had a secret pumpkin patch hidden in the Williams Forrest only accessible by train! So the kids and I checked it out. When we got to the Train Station, the staff was incredibly nice and accommodating. I had my togo PICU. Vent, Oxygen, medical supplies and equipment along with my Trach/Vented William and sister Isabell. Everyone at Grand Canyon Railway were very nice, and super helpful in loading us into the train car that had enough room for all or crap. When we got to the Pumpkin Patch we picked out our pumpkins. It was a neat experience riding the old train and spending time with my kids. We ended up going to Williams the weekend of 10/21 and 10/28! My kids are such great little travelers!
- November 2011- Our Fighter, our Bubba, our Buoiii, our Boodie, our Prince William, Sir William, Our Sweet William turned 2 on 11/3. It was a great day, and what an amazing and trying 2 years it has been. It is so amazing to see what my little baby has gone through, yet still be the happiest most content little dude on the block. To see my sons bursts of excitement, his bright smile, and his personality shine like the sun brings joy to my life on a daily basis. The developmental progress he has made despite all of his unfortunate conditions is 100% amazing on every level. He makes me so proud, and I fight damn hard for him. I fight damn hard for both of my amazing kiddos. On 11/14 William had a follow up Fluoroscopy which is an X-Ray recording of the Diaphragm function. He had a Fluorscopy in June 2011 which determined that Williams Diaphragms appeared to be paralyzed. Which is why we chose to have the trach placed, so he could receive vent support since his diaphragms were paralyzed. The follow up exam showed that Williams diaphrahms were moving amazingly perfectly without any dysfunction. SO no wonder William was not needing vent support! YAY! On 11/16 was Richies birthday. He was in Williams working, but we celebrated in spirit! On 11/23 my Amazingly sweet, beautiful, special, unique, Happiest of the Happy Miss Isabell AKA B-Bell turned 6!!! SHe has provided the best 6 years to us as parents. The last 6 years have been nothing but Happy, and Silly times that I will remember and cherish FOREVER! This little girl of ours is one of a kind. Holds no judgement toward any. Is a sweet friend to medically fragile children as she understands them and others do not. Is a breath of fresh air. Brings a happy smile and carefree moments to our life with her contagious giggle. Is always begging for "more" as she giggles her butt off. Anything and everything is funny to B-Bell. She loves to ride the bus to school. She is the star student in her class, of course. She has set a fashion statement with her hearing aids and glasses. They are PINK. She wears school uniforms, yet all of her teachers and staff at her school tell me she is the Best Dressed student- makes me smile! They also tell me they can tell Isabell is really loved- makes me proud! She's caring. She's sharing. She's giving. She's SPOILED! What else could I ask for? I am in complete bliss and considerer myself the luckiest mom in the world to have a daughter like B-Bell. I have so much LoVe for that little thing! And to move on- Thanksgiving was Yummy. We had a small gathering at my moms house. She made dinner which was like I said, Yummy. Thank you Mom and Tom!
- December 2011- The month went by super fast. After William had his Fluorscopy in November, PCH Pulm Dr. Woodward did not get back to me with the results for over a week, and when his trach and airway nurse called me with the results and said Dr. Woodward still wants William to be vented at night while sleeping (Um, Ok- we are not using the vent at all!!) and that we should follow up in February 2012. I'm not sure if PCH Pulm is understanding, but William is not using the vent- so I needed orders for this. Dr. Woodward was not very pro-active, or at least not as pro-active as I need a physician to be that is aboard Team William. So I called another pulmonologist in the east valley by the name of Dr. Kelvin Panasar. I was seeking a second opinion of recommendations for William's respiratory condition. He had an opening for a new patient consult on 12-2! He was glad to meet us, and immediately connected with us. He has a bright personality, and listens carefully. He was impressed that William was off his vent- and to make sure his CO2 levels were staying within a safe range, he wrote an order for a CO2 monitor for HOME! This is a monitor that monitors his CO2 levels while he is sleeping. The monitoring we have done has been going good, and Williams CO2 levels are staying within normal range! The kids and I went to the Ryan House Christmas Party on 12/9 and it was so nice. They had snow, Santa and Mrs. Clause, Hot Cocoa, Cookies, and even some holiday food being served by a chef! Thanks Ryan House for being "there" for my family and families alike. To make a donation to Ryan House Pediatric Palliative Respite and End of Life Care Home visit www.ryanhouse.org this is a resource that we utilize for our Prince William for short periods of Respite. Amazing place, Amazing people. We ended up having a Very Nice Christmas. Santa was good to our kiddos. Isabell got a Pink Cadillac Escalade from Santa and has driven it every day since Christmas- she is totally obsessed with her pink car.
- January 2012- Happy New Year! Richie got laid off in December and was off for most of the month. Then he got a call for work in Chinle, AZ on the Indian Reservation working 7/10's. The closest decent place to park our RV happens to be 100 miles away and it's in Gallup, NM. So he is commuting 200 miles a day for work- which is really tiring for him. They leave the RV Park at 5am and don't get back until 7pm. They leave when it's dark, and get back when it's dark. Other than getting off early a time or two- he hasn't really seen Gallup in the daytime. The kids and I went to Gallup to visit on 1/13 to 1/15. Gallup is not the most beautiful place in America, but not terrible either! From 1/19-1/22 William stayed at Ryan House and Isabell stayed at Grandma Jackie's. I was able to escape, by MYSELF, and go visit Richie in Gallup. He had to work each day, but I got a little away time. On Friday 1/20 I did absolutely NOTHING all day, as I layed in bed the entire day. I watched a movie, and seriously slept like I've never slept before. It was wonderful! The weekend was great, and full of relaxation. On top of that, the kids had a great weekend too. We aren't going anywhere this weekend, going to stay home. We 3 travelers need some home time!
We are missing Daddy, and we hope he can take a few days off soon and come home for some R&R and Family Time. He works so hard for us. Good days and bad days, he always keeps his calm. Always handles things one stride at a time. He is one hell of a family man. He's a strong man, with a gentle hand. Most amazing father to our 2 special kiddos. Has such a special bond with his kids, and thats all I ever wanted for my kids. To have a dad like they have. Mission accomplished, I am a lucky woman to be married to the best husband and father. I'm feeling pretty lucky right now. Yep, I'm a lucky gal :)
Let's make 2012 GREAT!
No comments:
Post a Comment