Wednesday 11-26

Just wanted to send a quick note to let you all know that I hear Joshua is doing well. They are still working on wiening him and he has been a little fussier than usual. They did only go 5% on both but I wouldn't allow that to happen if I was there. I would have made them pick one or the other. It can be a little frustrating . They are also starting Lansoprosol AGAIN! I have hit the point.....I am going to let them and then when he pukes no stop for the next 24 hours maybe they will listen to me and know that I do know what I am talking about. I am so tired of the battle. I am sorry that Joshua will have to be uncomfortable but not sure what else to do at this point. There is a slight chance that it could work now because of the G-J Tube. Since that has changed I will let them give it a whirl. Please pray that Joshua can tolerate it and stays semi-comfortable. He hasn't been puking so it will be easy to know what the culprit is if he starts. *SIGH*
Other than that. He has been tasting food, I wish I could be there for that. I asked the nurse to hunt down a camera so that I could see his faces. That is a fun mommy thing that I am missing with him. They only seem to feed him when I am gone. :(
I could hear him babbling and playing with his flower toy. He sounded good. I can't wait to get there and snuggle him.
Betty is back in the ICU. They are concerned about her having a stroke. Please continue to pray for her health and for strength for her loved ones. She had a scan yesterday and went for another one this morning. I haven't talked to the Dr's or Ray to know what is going on yet today.
I hope that you all are well and I hope that you all have a very HAPPY THANKSGIVING with your families.
Blessings,
The Garrison Family

Garrison Family Update

Oh where to start.....
Joshua is doing ok. He starts the Rituximab today. This is the second of 4 steps to bring his immunity levels down. They did a 20% Morphine wien yesterday so he is having some withdrawls today. The nurse, Joy, is on it and hopefully they wont be so aggressive next time! Other than that all seems well. Since I came to Missoula he has had a tub bath and been doing some physical therapy. He has been spending time with Grandpa and when Grandpa needs a break he goes out and flirts with the nurses at the nurses station! What a kid. :)
Betty is stable. It sounds like she had a busy Monday...which is the norm for hospitals. I have been sick the last couple days so I will not be going up to see her for a day or two.
We will be staying in Missoula until next weekend at least. We want to make sure that Betty is ok before we go. That means we will be here for Thanksgiving. I am happy to be able to spend the holiday with my kids. I am sad that Joshua can't be with us but I am really looking forward to next year when we can ALL be home together.
Trevor has been having some issues lately. Please keep him in your prayers. He can't understand why he can't be with at least one of his parents. He has been pretty weepy. In the the middle of one of these weep sessions he said "it is all God's fault for giving Joshua only 1/2 a heart!" GASP!!! That is a really tough one to explain .....so if anyone has any suggestions I would be MORE than happy to hear them. Maybe someone knows of a good christian book that might help!
The girls are good. Shyla is looking for work. She has been in a pretty good mood lately. That is nice. She is a little sore after taking a serious digger in the kitchen the other night. But....as James said....what were you doing standing on the furniture anyways?? Let alone a 2 legged chair! :)
I hope that you all are doing well.
Blessings,
Leah

Missoula

I will be going to Missoula in the next hour or so. I really feel that my other kiddo's need mommy right now. My two sisters, thanks to marriage, will also be going to Missoula. We are all meeting here at the hospital and will caravan home together. I am not sure at this point how long I will be in Missoula. My dad is going to come out to Seattle tomorrow to be with Joshua in my place. I find peace knowing that someone will be with him.
Betty is out of surgery. The surgeon said he felt it went well. They are concerned and are now dealing with hemorrhaging. She will be in the hospital for a while to monitor to her and make sure that her brain recovers. I don't know a lot of the details right now. Please keep my father in law Ray in your prayers. I am sure that he is scared and hurting.
Joshua is still continuing to run fevers. We are now out of isolation as the cultures were negative. He is just feeling a little crummy. Please pray that he gets healthy and strong as each day passes. Oh, we are also having a GI consult done to see if there is a reason for the vomiting....that seems to never stop! Hopefully we will learn something. I think it is common for kids in heart failure to have a lot of vomiting. They are adjusting his milrinone by weight. The dosing rate he is on now is 8.7 kilos and he is 9.4 now. If they feel the need to increase it anymore than just for weight then he will make a trip to the the NICU. We shall see what they choose.
Leah

PRAYER REQUEST

PLEASE PLEASE PLEASE stop and pray for our family.
I just got a call from my father in law. My mother in law, Betty, was just rushed into emergency brain surgery. She had a brain aneurysm. Please pray that she comes through this and pray for all the members of our family who are hurting and traveling now.

Tuesday

Hello friends,
Just a quick update today to let you know that Joshua is doing well. He has hit the 20 pound mark! He started his IVIG yesterday. That is the first process of the 4 week long immune suppression regimen. They are basing it off of data from older kidney patients. There is no real data for doing this in young heart children. The hope is that this will help him better accept his new "angel heart".
He is supposed to work with OT/PT today and try some oral feeding. He is very cranky, so I am not sure that it will happen. The IVIG is a lot of extra fluid so he is working harder to breathe. He will get an extra dose of IV lasix soon and hopefully that will help him pee of some unneeded fluid.
I will update again soon. He is screaming and I need to go tend to him.
Leah

He is out of surgery

He is sleeping peacefully. He came back out with 2 new friends and a new accessory.
He must have really been a charmer in the OR. He has a big brown bear with a mask on and a squirrel keeping him company. I will post pictures when I have a camera.

Thursday

Oh....where do the days go!! I can't believe that my time with Chubs in Seattle is almost over. :-(
Joshua is in surgery, finally. I will update when he gets out. He is getting a G-J tube placed.
He will get to have the NG tube taken out of his nose and will have one that goes right into his tummy. (Here is a website to another children's hospital that has some info if you are wondering. http://www.cincinnatichildrens.org/health/info/abdomen/home/) I will put a pic of his new accessory when he gets back.
He has been doing really well. He weaned himself off of his O2 today. He decided he didn't want it on his face and took it off. He did really well. He satted in the 80's all morning on room air.
Yesterday, OT/PT came by and fed him bananas! I was pretty bummed that I wasn't here and have no pics of his first "real" food. But we are going to try squash on Monday. I won't be missing that one! Here is a little video that we took the other night. He like to "find" your forehead! :)
Ah...the brotherly love. :)
(I wish it was more clear. I took it with my Blackberry so it is pretty rough looking....but you will get the idea!)

Monday

Joshua is doing good today. He has been pretty sleepy but for the most part in a real good mood.

I wanted to put out a prayer request for baby Mia. She is up in the ICU. We were right next door to her when we just recently went to visit the ICU. She is a little 4 month old baby that really needed a heart. Today, her miracle gift was received!! Please pray that her recovery goes smoothly and without incident. Please, also include the donor family in your prayers. As one family is celebrating, another is grieving. Both of the families need to be lifted up.

Blessings,
Leah

Little Pearly White

Joshua has a tooth!! His bottom right tooth has broken the skin. He has been so cranky all week. I am sure that this explains much of this. He has a red chaffing chin and cheeks, low grade temp and a bad temper. The bottom left one is right at the edge of coming through. It is so hard to believe that he is getting teeth. He has never tasted anything other than formula just a couple times and medicines. I can't wait until he can start to experiment with some other flavors and textures. His heart rate is back down to the 130's when he is sleeping. He hasn't needed as much O2 the last day or so either. He is satting in the 70's on 2/3 of a liter. Much better then the 2 liters and blow-by that he required early this week just to stay in the low 70's.
We are back on the floor now too. Room 4004. I miss the other cluster but it is nice to be out of the ICU. I enjoyed getting to see everyone up there again but I can "hide" more on the floor. When you are in the ICU you are more in tuned to what is happening around you. You can hear and identify different tones from other rooms. On the floor you can shut the door and you only have the sounds of your room.
My mom, James' mom and the girls went back to Montana today. They just called to tell me that they made it. I am SO thankful for the time that they have spent here.
Grandpa Ray~ thank you for letting mom come up here. I know that it was a sacrifice and I know that you really missed her. You have NO idea how much I appreciate it!
Grandma Betty~Thank you for coming and allowing the girls to be here as long as they were. Having at least part of the family here made it so much better!
Mom~Thanks for coming up here for the week. It went too fast. I miss you like crazy. Thanks for helping transport the kids.
Shyla May~ I miss you already. You are a daughter to be proud of. I love you. You better call me everyday.
TD~ I love you and high five for listening to your mommy. :)
Theresa~ Thanks for spending your vacation here so that Trevor could come up and see me for a while.
Trevor is still here with me this week. :)
I hope that you all have a nice week.
Blessings,
Leah and Joshua

Out of Surgery

Joshua is out of surgery. He is acting like a drunken sailor, but he did well. Or rather the Dr's all did well. :) He has a new line now. I would also like to report that his heart rate when he was playing this morning in his exer-saucer was 136-138. He was in the 120's when he was asleep! YEAH. I will more later...just wanted to let you know that he was ok.
Leah

Surgery

Just so you know....Joshua is in surgery again right now. Trying to get a PICC line that works, or some kind of line. There seems to be some confusion. Please pray that he doesn't loose much blood. He lost a fair amount the other day and there is no blood in house for him. :-(
I will update when he is out.
Love,
Leah

Ugh...it has been one of those days.

So....here we are. Still in the CICU. We no longer have a room on the floor. Evidently we were moved out. I would have LOVED for someone to call me so that I could have gotten all my things out. But they didn't. Now, I am chasing people down to make sure that I have all my stuff. UGH.
Joshua hasn't had a very good day. His heart rate has been pretty high all day. Mostly in the 180's. He is pretty dehydrated and is waiting for a blood transfusion. He lost a lot of blood in surgery today so that made the need that much greater. They had weaned him from the Propanalol (which was started to reduce his heart rate). I guess he really liked it. Now they have started him on Esmolol. It pretty much does the same thing but it is an IV med. So....here are we are. Residents again of the CICU. He can not go to the floor while he is on Esmolol.
It has been very busy here today. While Joshua was not critical there has been a lot of traffic in and out trying to trouble shoot and come up with the best plan.
So a recap. He had a fever this morning. I think he is feeling yucky...I don't really think he has an infection. He got a new PICC line this morning. Neither lumen draws and it was not sutured to his skin. :-( His PIV that he was supposed to be getting his Milrinone through blew out. His heart rate was way too high, blood pressure was too low, iron and potassium need some tweaking, still waiting on the blood transfusion....I think that about sums it up. *sigh*
So, the upside Les was his nurse today and Nicole was in here helping out most of the day. :)
I am EXHAUSTED and NEED to get some work done.
Leah

Out of Surgery

Just wanted to let you know that Joshua is out of surgery. He is back up in the CICU but is expected to go back to the floor later tonight. He spiked a fever this morning and there is a fear that he possibly has an infection in his blood. Please pray that he does not. We do not need a set back right now.
He has a new line and it all seemed to go really easy.
Thanks for checking in on him!
Leah

PICC line PROBLEM-O

So~our favorite little dude is spending the night in the CICU tonight. The IV team came in to change the dressing on his PICC line and it broke! It bled and was a mess. They put in a PIV so that he could continue to get his Milrinone. Policy states that you can only get Milrinone through a PIV if you are in the unit. They tried to rush him into the IR for immediate care but they had another little kiddo in there and they weren't going to be able to get him in until 2 am. Needless to say they decided that it could probably wait until the morning.
We just had a bunch of back and forth regarding this line earlier today. Change it...don't change it...make it bigger....can't make it bigger....need new line....too risky to put in new line....You get the idea.
So.....it was determined that this PICC line would stay in until he has the transplant and then a line would be put in through a vein in his upper body.
Of course....Joshua complicated things....I SWEAR it is the Garrison in him. :-) LOL
I don't know what they are going to do with the line now. Fix it or replace it. Guess we will find out tomorrow.
I am VERY glad that Betsy is on tonight. She is taking care of the kiddo right next door to Joshua. I know that she will keep him company tonight. :) We lucked out and ended up in the unit and not the Bridge. (I love having friends!) In fact he is in Room #70. That was the room we spent most of our time in this summer. I am at the house with Chubbs tonight. I will have to get up super early and head over to the hospital so that I can be there when they take him back to IR. Oh~ I am also happy to have friends out on the floor! :) They are holding our room for us so we didn't have to move out while he made a visit back to the unit. YIPPEE.
Hope you all are sleeping! :) More tomorrow.
Leah

October 9th

This was one of Joshua's first rounds in the Bumbo chair.
http://www.youtube.com/watch?v=_5G7ghg0fmI

When the page loads right under the picture make sure that you click to watch it in high quality.

Happy Halloween!! X2

A little coaching can go a long ways...... Sorry you have to watch it sideways.

Happy Halloween!!

Not too much to report on today. I just wanted to share Joshua with you all.

He did get his HIB vaccination tonight. He took it like a champ. We had a Heparin issue today but the important thing is that Joshua is ok. It was a grim reminder that no matter how careful, mistakes happen. For the most part he was very happy and flirty. Tonight I was playing with him and blew a raspberry under his arm. He did start to giggle. Still a little reserved but I think I found his ticklish spot. If you touch his ribs or his feet he gets pretty agitated. He does not find it at all entertaining.

Shyla and I took Trinity (aka Little Bo Beep...or if you ask her, Peep) trick or treating around the house. We had a lot of fun and she really...REALLY scored a lot of sugar. Way more than we need! I was proud that I maintained COMPLETE control and had one Junior mint and one Almond Joy. :)

My BIG boy Trevor (who was a ninja) had an enjoyable time with Grandma tonight. I am sure that it is one that will stay with him for a long time. It will be known as "That time Grandma took me and we got lost and then she tripped and took a digger over the weed." :) Ah....the memories.

Here are some pictures for you to enjoy.

I hope you all had a nice time today. .

Blessings,

Leah