Thursday, November 7, 2013
I have not been good about updating this blog...and I am rather doubtful that anyone reads it anymore but felt the need to do a little journaling so here I am.
I am sitting in room RC.6.906, at Seattle children's, with Mr. Joshua. I am pretty sure it used to be room 4006 which is all too familiar looking onto what is now the old and unused helipad. We came here for a little dental procedure and ended up being admitted prior to the surgery. Joshua is running a little fever and as we all know he just gets crummy....and hospital staff around here see him and panic. I couldn't be happier that Dr Kemna is on service and is all too familiar with Joshua's little shenanigans. She could also find the humor in the fact that I was able to convince an ICU fellow that he did not need to make room in the ICU for us! A viral pcr is on the agenda and we shall see what happens from there. Right now he is perfect and resting.
I must mention that this November is not much different than any other. Joshua was life - flighted Thanksgiving eve last year and here we sit again among all the fall cooties. Yuck! Seems to be annual tradition. This year I am grateful for the company of my mom but my heart aches and longs for the presence of my dad.
I have so much to fill in and I hope to be better about documenting and sharing the life of this amazing little man.....
Sunday, June 12, 2011
We recently went to Seattle for his annual cath but he ended up getting sick that morning so we had to cancel. We will be heading out to Seattle on July 29th to get it done. I am feeling pretty blessed that our heart friends from Alaska will be there at the same time. Natalie will also be getting her cath that day in preparation for her Fontan Surgery. She holds a special place in my heart as does her mommy. I found much strength from them on my first trips to Seattle. They are an amazing family with an amazing love for our Heavenly Father! I can't wait to see them again. Angie and Natalie also blessed us by coming to spend some time with me when Joshua was in the hospital not long after his transplant. I am SO excited to reconnect. I don't yet have the travel details together but an working on some sort of plan. Trevor races that day so James will stay in town with him. My mom has to work and my dad needs to be there for Trevor's race also. I have no doubt that the Lord will provide a traveling partner.
Joshua has really come a long way in the last year or so. He has now started to eat a little on his own. Most fluids still come in the form of Monogen thru his G-tube. He has started to drink more water.....hopefully he will continue to take off on that. He has been puking alot this last week since he has been sick. I can tell he has lost some weight and his intake has been less than desirable. I have started putting him back on the feeding pump at night. We have been bolus feeding for almost a year so I am not really enjoying this again but I think it may help. He is just too busy to deal with being pumped full of fluids during the day. He also eats much less when we are filling his belly every 2 hours during his awake time!
He still continues to be on a boat load of meds. We have hopefully found a good balance that will keep any rejection at bay but allow him some immunity. He was on chemo drug for over a year because of rejection and effusion issues but we just stopped that about a month ago. He remains on Cellcept, Rapamune and Tacrolimus as his main lines of defense. Joshua also receives the following medications; Duirel, Sprironolactone, Bumex, Levothyroxine, Dapsone, Losartan, Sildenafil and 1/2 baby aspirin. He get them at morning and at night. I am very thankful for this very reason that he still has his G-tube. I could not imagine trying to get him to take these orally each day!
Joshua is now walking....and running....and climbing! He is getting more verbal each day. He still loves to sing the 'itsy bitsy spider', although now it sometimes is done in a gruff voice and includes stomping the spider into the ground. Happy Birthday is also a fave. He used words that we didn't even realize he knew and surprised me today by counting all the way to 5 by himself. He knows many animals (thanks to Barney) and is learning many other things along the way. Some good....some, well, probably not so much. He is certainly all boy.
Our family has gone through many changes this last year. Joshua was up and down health wise. Trevor was busy as usual. He plays fall and spring soccer, is a Cub Scout and races Outlaw Karts. Trevor has earned 2 first place trophies so far this year! He gets AWESOME grades and has good friends. He is really a kid to be proud of!
Shyla had a little red headed boy of her own in March of 2010, little Izak James. (I can hardly believe that I am a nana X2 now!) I was blessed to be there at witness his first breath as I was with Trin. (I even got to cut his umbilical chord! ) We were shocked to find out that he also had some heart issues of his own. Not nearly as serious as Joshua but no less scary for sure. He required open heart surgery this year. I am happy to report that he is doing super well! He is no longer on any meds and has healed well.
Shyla and her kiddos also moved to Washington in September. It was quite an adjustment and not one that I was really thrilled about. I miss them dearly. Kids can really be a pain but it is heart breaking not having them close. She did make a good choice to go back to school also. She is currently enrolled in her last semester for her assiciates degree in Medical Billing and Coding. She took a CNA course last month and is currently working in Home Health! We are very proud of her. She has been dating a boy for about a year and they are planning on getting married next year.
James has been doing very well. He is currently looking for work. (If you wanted to say a special prayer for him that would be cool and much appreciated!) He has been pretty depressed for a stint. It has been nice having him home with Joshua but he needs to be working for his sanity. I don't know that Joshua would necessarily agree. He has become VERY attached to his daddy this year.
As for me, I was on unemployment for a long time after being laid off before I came home with Joshua. I didn't realize how much I loved my job at APS. I LOVED being at home with the kids but that doesn't pay the bills. I went back to work in November at DirecTv. I am happy to report that only lasted about 5 months. I have never been so miserable in a job EVER! I was blessed to get a job in a mental health office for children and families. I have spent my career in mental health and this is a great fit! The people that I work with are wonderful and I can't wait to get up to my full potential with this company. I also decided that it was time to go back to school. I am asking myself why exactly on nights when I have to stay up so late studying! I don't know what I want to be when I grow up. I am working towards my Bachelors in Management Information Systems so I have a degree to back up my brains. :) But I am thinking of a double major in Psychology. That is where my passion lies. We will see where that takes me. I am happy to report, that as of now, I have a 4.0!! I have an accounting midterm on my plate for tomorrow (that I really should be studying for) so that can change. Wish me luck!
Monday, January 4, 2010
Sunday, January 3, 2010
Things he copied....
*Trevor got hit in the eye with something and was fitting out. Sissy told him you are fine, how many fingers am I holding up? Trevor's response...."Duh, three" We all broke out in laughter when Joshua shouted out..."Duh, three"! Trevor forgot that his eye hurt in the midst of the laughter. And I must also add, no matter what happens to Trevor if he gets hurt and cries....Joshua will cry louder, harder and more dramatically. He always steals brothers thunder!
*We had a nice day with family for his birthday. Pretty low key. He liked to touch and taste his cake. I tricked him by asking him to kiss it goodbye! He loves to spend time all of his grandparents to it is always fun for him to be surrounded by them.
Thank you all for checking on our Joshua. I am going to sign off with a HUGE prayer request. I screwed up at the end of December and didn't pay Joshua's insurance premium. I CAN'T believe that I did this. I have had a lot on my mind and it totally just slipped out. I remembered on the morning of the first but of course they were closed so there was nothing that I could do. When I called today they said too much time had lapsed. UGH. I sent in a letter to appeal their decision to cancel Joshua's insurance. Please pray hard that they will reinstate his insurance. I have been a total wreck as I don't know how I will care for him with the cost of his medical care being WAY more money than I see come in. I know that it is all in God's hands and nothing is too big for him to handle.....but what happens when I was the one that screwed up? *sigh*
Here are some pictures! :) Blessings to ALL of you. I hope that you all had a wonderful Christmas and I hope that you are all blessed and filled with joy in 2010.
Love, Leah & Joshua (& of course the rest of the Garrison clan.)
The BEST part of going inpatient at the hospital.....FRIENDS!!
This was taken a day or two before we left the hospital in November. He was playing in his crib super early in the morning when I was still resting. I didn't know that the nurse had the pillows set up for him. All of a sudden he went quiet so I jumped up to check on him and this is how I found him. Guess he was ready for a recharge! (Notice the leg....always out the crib rails!Concentrating real hard! He was helping Trevor and I wrap sissy's gifts while she was out of the house. She had the 2 biggest boxes so it was quite a chore. Joshua was 'helping' us. As soon as we got the gifts wrapped and were feeling like we did an alright job considering the extra set of hands....we heard him ripping! He also helped open the gifts. Needless to say the packages went under the tree with lots of tape and mismatched paper. :)
What!?!?!?! I wasn't pulling the lights of the tree!!
Sunday, November 22, 2009
So a quick update.....
Joshua went to OR on Tuesday, then Wednesday and then on Friday. I am sure that he is getting tired of the anesthesia. The right chest tube clogged and they wanted to place a left one. There was no left fluid so they just placed a PICC line in his chest and changed out the right tube. Wednesday he went to the cath lab. I am THRILLED to report that there is NO REJECTION!!! WHOOO HOOOO!!! This cath will take the place of his annual one that should take place in January. Thursday night his PICC like clotted off so they decided that he had to go back under and replace the PICC line with another one and try for a left drain again. The left drain has put out 85 cc's and the estimate was 75 so we are good there. Last night, however, the freaking right drain CLOGGED!!! ARE YOU KIDDING ME?? So, he will go NPO again tonight at midnight in care we have to put him under again to replace the right drain. *SIGH*
On the plus side. He is PEEING amazingly well. There was a point this week where it had stopped again and they were running out of ideas. If he didn't start to pee they were going to move him to the ICU to administer a drug to lower his blood pressure in the hopes that it would stop the effusion and 'warm' his kidneys up. Thankfully, the night before this was to happen he responded to the diuretic and has been peeing again. His BUN is the lowest it has ever been at 38 and his creatinine went from 1.0 to 0.5. HOORAY.
Today he looks super. His oxygen is actually off for the first time in 3 weeks. He is breathing easy and peeing well. Maybe.....JUST MAYBE.....if he stays stable like this we can go home sooner rather than later. We just need to get his meds all straightened out. Please pray that they don't need to replace that tube. I would love to see it just come out so that he can get out of the crib and play! He has been stuck in his bed for nearly a week and it itching to move around.
I would also like to report that he has begun to be interested....really interested ... in EATING! WHOOO HOOOO. He has been eating applesauce and doing well with it. Maybe tomorrow I will try something else. It is so nice to see him want to try different things. Hopefully he will keep it up.
Tomorrow is the start of a new week and Dr Kemna will be on service. Joshua is always much nicer to her than Dr Law. :-) (I think he likes to challenge his great mind!) So maybe we will be on a homeward bound trail.
Leah and Joshua
Sunday, November 15, 2009
Thursday, November 12, 2009
Please pray that Joshua's little body heals fast so he can continue to move around and be happy. Being tethered to the bed at two years of age is not making him too happy. Also, please pray for strength and comfort for my kiddo's at home who are really missing us.