Saturday, May 31, 2008

Joshua's Fundraiser

James and I want to thank everyone who worked so hard to put together the fundraiser on Joshua's behalf! Thank you to all of you who donated your items, time, space and talents. And thank you to all of you who came! :) We really wish that we could have been there to share company with each of you. It means so much to know how much everyone cares about our family and our special little boy. We know that Joshua has touched many lives and we thank you for keeping him in your thoughts and prayers.

He has had a very restful night and has shared many smiles and kisses with me today. I really needed them.

Thank you again to each and everyone of you. May you and your family be blessed like you have blessed ours.

Leah and James

Even when you think you are mentally ready...

chances are you are not. I was ready to come here and pass Joshua on for his care. We had his clinic appointment and that one went well. We prepped him for his cath and gave him over at 2pm. It took almost 4 hours for them to get the cath in. Dr Johnston finally came out and talked to me at 7:30 pm last night. He looked and me and said "I am really worried about his heart function...." and my heart sank. The had a very hard time getting access. They couldn't get in either leg as those are both damaged from previous lines. (This issue will be addressed in the future.) the right neck didn't work either, but they finally got it in the left side. Since everything is made to access from the right, this was a really hard procedure. They could determine that the heart is not functioning very well. The blood flow through the aorta is narrowing and that will need to be addressed before the surgery. He also developed several heart arrhythmia's yesterday that really concerned the doctors. They admitted him to the ICU and started him on 2 medications. One will hopefully help with the heart function and the other is to help with the arrhythmia's. His heart beat has slowed and appears to be beating much better and firing from the correct part of his heart. We won't know how he is responding to the melranone for the function for another day or so. His O2 saturation has also dropped. He is usually in the mid to high 80's and now with oxygen is still dipping into the low 60's.

He didn't sleep well last night and was really cranky today but seems to be doing better this afternoon.

We won't know until Monday morning whether or not they will go forward with surgery on Monday or not. I will update you all as we find out. Right now we are just hanging tight.

Please pray that Joshua's heart will not get any worse and for the team of doctors who are deciding what their plan of action will be.


Friday, May 30, 2008

We (finally) made it!!

Well we arrived safely in Seattle. We decided to take the scenic route this go around. We had a wonderful drive but it was rather slow going and we stopped many times along the way to stratch out Joshua. He did very well! Slept most of the way and is very happy to be stretched out on the bed. :)

James and I had a good time on the way here. We came over Steven's Pass. If you have not gone over this pass....YOU NEED TO. (Just not in the winter...that is another story!) I can safely say that it was very humerous if nothing else. Here are a couple fun photo's from the drive. Many times along the drive I expressed how much I would LOVE to see a real bear in the "wild". Low and behold...I DID!! :) It was awesome. Just as I got all focused on the cool sight the dang sheriff in front of us sounded its siren and it ran off.

We also had a wonderful laugh about churches of all subjects while we were going thru one of the small towns. There were two beautiful churches in the small town. One had been turned into a daycare and the other a rock and fossil shop which is actually up for sale. But don't fret....we found an actual chuch. :) (Due to technical difficulties, I will have to post tomorrow.)

Well we are tuckered out. Goodnight.

Leah, James and Joshua

Thursday, May 22, 2008

One week to takeoff!

Boy time seems to be flying fast! It is already only one week until we need to take off for Seattle. James, Joshua and I will be leaving after we drop Trevor off at school. James' parents will be here with Shyla, Trevor and Trinity until James comes home. He will be with me for a little more than a week. Red's Towing has been great about him taking the time off work to go up there.

I talked to the Care Coordinator at Children's to discuss housing options. It looks like we should be able to get into the Ronald McDonald House. We are pretty close to the top of the waiting list. That is a big relief.

Joshua had his appointment with Dr Hardy yesterday. Everything seems to be good. His breathing has been a little labored the last few days and he was running a slight temperature yesterday. (101.1) He seems to be better today. He sneezed a lot but wasn't cranky and didn't sleep near as much as he did yesterday. I was getting a little worried that he was catching something but I think it is all ok.

Please pray for all our health. If any of us get sick this week we will not be staying at the RMcD house. It is imperative that you are in good health before and during your stay. You don't want to make a fragile child sick with something that they can't fight off.

We want to say THANK YOU to all the wonderful people that are working so hard to put Joshua's Fundraiser together. We sure wish that we could be there! Thank you all for your support and continued prayers!


Wednesday, May 14, 2008

No New News

Well not too much has hapened this last week. I just wanted you to all know that I AM going to keep up on this site! I didn't want anyone to have any doubts! ;)

Joshua had a Dr's Appt with Dr Hardy on Monday. Everything looked really good. He feels that the timing of this surgery is just perfect. Dr Cohen (the surgeon) is actually coming to Missoula tomorrow to have a little meet and greet. (This would usually happen if they wanted a Dr to "send them business". Of course this is not the situation in this case. Like Dr Hardy says, there is no schmoozing him....he sends his heart kids there because of the level care! ) Dr Hardy has asked that I take Joshua in tomorrow afternoon to see Dr Cohen so that he can "see him in his own element". When they do case reviews on him Dr Hardy has to tell them how good he looks because I assume that with this defect he shouldn't look so darn good. Several times Dr Hardy has just shook his head, smiled and said "Leah, kids with HLHS just don't look this good."

It is very hard just looking at him to imagine that he has a broken little heart. I think that is why I chose to post his bath time picture. He looks so good to me, little zipper and everything. :)

We are just so thankful to the Lord for each and everyday that we get to love on him!

Just a few little notes: Watch the Missoulian this Sunday. I received an email saying don't be surprised if you see your son's picture in the paper. :) I guess the ad for his fundraiser will be running a couple times. I have also been contacted by KPAX to do somekind of story on him and the fundraiser. While there is excitment in that, it still feels a little weird to me that there is so much exitement going on around this one special little boy.
Thanks for checking in! :)

Thursday, May 8, 2008

And it has been rescheduled!...AGAIN

So....I could just delete the last post but then you all couldn't join in the entertainment of my oh so crazy life.

Bree (bless her heart) just called again. They couldn't get a bed in the ICU for the 3rd so now the surgery will be on June 2nd. However, the clincher is that the pre-op and Cath will have to be done on Friday May 30th. So, sadly it looks like I will not be here for the fundraiser. :-(

I am starting to get a little hesitant about making too many plans!! I have to say though that I LOVE the staff at Children's. Amber, the outreach coordinator is going to see if she can help us get a room at the RMcD House so that we don't have to travel too far with Joshua over the weekend. We are lucky to have family in the Seattle area but I don't think the little guy will feel much like being in his car seat for a couple hours travel time after the long ride there and being poked and prodded all day long!

So...until further notice.... ;-) June 2nd is the big day!


And it has been rescheduled!

Bree from Children's just called me back. They have decided to change the date. She spoke with Dr Cohen (the surgeon who did the 1st surgery) and he wants to do Joshua's surgery himself. He will not be in the office (or the hosp I guess :) ) on the 23rd so his surgery has been moved to June 3rd. All of the pre-op and the Cath with be done on the 2nd.

This is a blessing and a relief all at the same time. This gives me a little more time to plan and love on the kids before hand. It also allows us to be in town on the date of Joshua's fundraiser. They had it scheduled for the 31st of May and I have been so stressed since I heard the surgery would not be late in the summer like I had planned, I really didn't want to miss it. Amazing to me how it all comes together like it is supposed to. (When will I learn that it is not MY timing, but the Lord's timing?!)


It has been scheduled...

We will be heading to Seattle in just a couple weeks! I knew that it was coming but I am overwhelmed with emotions now that I have an actual date.

We will be going over on Wednesday May 21st. He will have all his pre-op appointments and we will consult with the surgeon on Thursday. After the basic appts he will have a cardiac cath done to look at the inside of his heart and will check right into the hospital. His surgery is scheduled for Friday the 23rd.

So, please pray for our family as we get ready for this next step. I am taking it all particularly hard. Knowing that I have to turn my little baby over has become pretty traumatizing for me. I know that it needs to be done. I am also struggling have having to leave the other kids again. Trevor is also having a hard time knowing that I will be leaving. James will also be coming over for the surgery then returning home to work. While there is comfort for Trevor knowing that his dad will be here, he has made several comments about missing me. I think he is worried that it will be a long seperation again.

Most of all please pray for Joshua's health leading up to the operation and pray that he makes a speedy, uncomplicated recovery!


Tuesday, May 6, 2008

It's getting closer....

Today Joshua had his weekly appointment with Dr Hardy (his fabulous cardiologist). He presented Joshua's case to the Board of Surgeons at Children's. They all agreed that he should be scheduled soon. His heart function is not what they would like it to be and with his size they feel that it should be done sooner rather than later. The hospital should be calling me in the next day or two to let me know when we need to be in Seattle. Sounds like the end of May.

The G-Tube surgery in Missoula has been cancelled. He will have that surgery after his heart surgery while we are in Seattle.

Joshua is now just a hair under 13 pounds! He is growing so fast. He smiles all the time and in the last couple of days has become VERY familiar with his hands...which he LOVES. He hasn't quite made the connection that he is in control and will get upset when it mysteriously pulls out of his mouth! It is too funny.

Here is a picture of the little kids. I think this is my favorite picture of all time. Shyla and I were playing with all the kids and taking pics. This was captured right after I caught and hollered at Trinity for giving Joshua his first "wet willy"! I am trying to find a website to share the rest of the photos in case anyone wants to sneak out and see the rest. I will keep you posted in that too.
I will keep this up to date so you will all know what is going on and I will keep you all posted as to when we will be heading over to Seattle.