I apologize for the long overdue update. There hasn't been much to update. Jason had a busy week with the kids that were home in Oregon. Trying to get the house semi organized, or at least piles in one room instead of the whole house. Jason continuing to catch up with office work and keeping the water going on the ranch and throwing some fun activities in there as well. Gage, Lindsey and I had a pretty quiet week here in California. Lindsey was able to go on a camping trip to Angel Island with her good friend Kirtana. Friday Gage had clinic. His echo looked great and his labs are stable and heading in the right direction. It was a great clinic appointment. Gage has been acting like his old self with pletty of energy. He attended the Ronald McDonald summer camp and has had a great time playing with his friends from the RMH. Wednesday last week I went on a field trip with him to Jasper Ridge Farm. It was a lot of fun.
Saturday, my niece was married in Utah. We asked the doctors for permission to go, but they did not feel comfortable with him leaving the area, even for a few days. But, we were told they won't force us to stay here. Sooo, after Gages good clinic appointment, we made the decision to take him and head to Utah, feeling completely confident he would be fine. He has been doing so great and there were no lab draws needed or anything until his biopsy today (June 14).
Lindsey, Gage and I left Friday after his appointment and drove to Utah and Jason left Oregon with Megan, Sierra, Hunter and Jules (Hunter's friend) and met us there. For the first time in months we were all together as a family and to top it off, I was able to be with 5 out of 6 of my siblings and their families. It was such a wonderful and relaxing weekend. Jason and I even snuck off to the Anniversary Inn for our anniversary Monday night (thank you Garrity). Gage did great and was happy and energetic the whole time. Tuesday morning Gage, Sierra, Jules and I headed on the long drive back to California. Jason headed back to Oregon with Megan, Hunter and Lindsey. Sad to have to be apart again, but the time when we can be together for good is very close.
Very nervous for Gage today. He is currently in cath lab doing his first biopsy awake. To say that he is nervous would be an understatement. He is the youngest to be doing biopsies without anesthesia. I have offered him a big prize if he will do at least 4 in a row without anesthesia. He is leaning towards a new bike, but hasn't made his mind up for certain yet. One might ask, "Why on earth can't he keep doing them with anesthesia?" Biopsies that have anesthesia recover in the ground floor PACU, biopsies without anesthesia recover on the first floor Short Stay unit. Since his sisters do theirs without anesthesia and they will be doing them at the same time for scheduling purposes, and I can't be two places at once, he is going to have to do them without anesthesia as well. After the 4th biopsy awake, he will not be as nervous, since he will know what to expect. Then he will be as "biopsy brave" as his sisters are.
Sierra has biopsy today as well, just to follow up with her continued 1B biopsies (grrrrrr). Her chest pain has continued (more grrrrrr), the doctors ordered an echo for her before biopsy today. Some have suggested it might be an issue with the gallbladder. I will certainly bring that up with the doctors today, thank you.
IF both biopsies look good and Gage's labs continue to be stable, there is a very good chance we can be released to go home after his clinic this Friday. Of course, we won't know biopsy results until tomorrow, but if all is well, there better be a dang good reason to keep us here. If we do get to go home, Gage and I will return the following week for his clinic on Friday the 23rd. We will enjoy 5 wonderful days at home, then return to California, BUT we can return back home right after the appointment. We are getting really close, I can almost feel it.
11:30 AM
Gage did awesome on his biopsy. The doctors and nurses were pleasantly surprised. He nailed it and as they were taking him out of the cath lab he asked, "When do we get to do this again." Very proud of him. Both Sierra and Gage had the exact same heart pressures (weird) they were both 4 and 7. Again, you want these below 10, so these are great numbers. Rejection results to follow tomorrow.
On our way to Jasper Ridge Farm
Most of the cousins hanging out at the park. Below is some fun costume dance parties we had (thank you Jenn).
Jason even participated.
14 kids out on the trampoline. There somewhere in that mass pile of blankets.
Gage heading in for biopsy with one of our favorite nurse practitioners, Bambi.
Reunion fun
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8 comments:
Thanks for the update. Fantastic pictures!! Family is so good to be with!! Prayers from High Valley that you will ALL soon be home in North Powder!! What a wonderful day that will be!!
Crossing fingers you'll be leaving California on Friday. Prayers continuing on Sierra feeling better soon. Thanks for update and pics.
It was the BEST seeing you guys! Fun times. Hoping you get to leave CA on Friday.Love you all.
I have followed your blog for years... since back in the "Lindsey days". You are all so inspiring to me, and I have loved following your story. I've been curious for some time now, and have avoided asking, but now I just have to ask. Is there a reason you don't all just move to California permanently where you can all be together? What keeps you in Oregon and going back and forth? I really hope this isn't an insensitive question. I've just been honestly curious why you wouldn't just find a home in California so your kids can get the care they need, and your family wouldn't have to be apart.
I'm glad that everyone is doing so well! I hope you soon get answers regarding Sierra's chest pain! I hope that Gage will be able to go back home to Oregon!
You guys are so amazing! I love these wonderful pics! Hoping for zeros on those rejection numbers!
I have been following your blog since just before Lindsey got sick,and I have to say,your entire family is incredibly strong and brave with everything that your family has to go through ...I'm so sorry that it seems like you just get through one illness/issue,you finally get back to a normal routine and can return home ,continue with a "normal" life...and then ,boom,something else happens that throws your life back into chaos...I know that horribleness myself,I'm a childhood leukemia/bone marrow transplant survivor and when it seems I just get done with one thing,another pops up ..done chemo? now you need surgery..done surgery? now your need radiation..done radiation? now you've had a bone die and need to be removed,so now you need more surgery...finally finish 3.5 years of cancer treatments?..now 6 months later you get to start all over again because you've relapsed....its a never ending cycle unfortunately ....and even when I was at my worst,it's nothing compared to what your poor children have to endure...I've never been in intensive care more that 3 days,I've never had open heart surgery,chest tubes ,a breathing tube for more than 2 hours awake...the longest I've had to be in the hospital without leaving at all was 7 months,but I was not hooked up to a life support machine,and I was a few years older than Lindsey so it wasn't as hard staying alone sometimes ..your family is incredibly strong,your children are so brave and resilient throughout every thing they have to go through...all in all you take every day with a stride,and try not to let it all get you down,and for that your family are some of the most courageous,brave,wonderful people out there,and I hope and pray from now on everything goes in the right,upward,positive direction and you can return to a normal life,with healthy children :)
I'm also wondering if the biopsies that are done "awake" are actually done fully awake or with conscious sedation instead of general
And if Gage absolutely can't handle doing them awake,could you maybe be with him, and the girls be in the short stay unit caring for each other ?
I just recently found out about your family. I do not even know you and I have so many feelings running through my head. I am so happy that your children are doing better and will keep them in our prayers. I pray that you will not have to go through this with the other 2 children you have.
I think that you are making the best decisions you possibly can. Also you don't want children with already bad heart conditions to go under so much anesthesia. I completely agree with your decisions that you all are making.
I also wanted to express to the families that the hearts are coming from my deepest sympathy. I am so sorry that they lost a baby like this and that the family that is receiving the hearts are very deserving of this.
We are thinking and praying for you all.
Sam
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