Thursday

So just a quick little update for you. Joshua has been doing very good. He is such an awesome baby and I am such a lucky mommy!!

We are well into the evaluation process for the transplant. I can't believe how quick things roll. I was supposed to meet with Tricia the Social Worker but I had to cancel. I am really sick today and will not be going to the hospital. Because we have to meet before Monday, we scheduled something for tomorrow and I will just go sporting a mask. I don't think that I will be able to go see Joshua for a few days. The last thing that I need is him getting sick at this point in time. *sigh*

Here a couple pics from the last couple days. His heart rate has been lower. I have seen 138 and 139 a couple times when he was sleeping. He has mostly been hanging out in the 140's to 160's. He has been on and off oxygen a couple times. He started Lovanox injections for the blood clot in his leg. Other than that all is about the same.

Take care,

Leah

And if I didn't like him so much.....

I probably would have thrown something at him. At who.....DR BADEN. He came in, smiled and just said "hmmm....look....137 days."
AAAHHHHHH are you serious!! I can't believe that it has been that long since James and I drove our little Joshua over here expecting no more than a 30 day stay. *sigh*
So. Joshua is having a really good day. I dressed him in a new outfit that James and I bought him when I went back to Missoula. It was fun to see him dressed again. Of course....he has been puking since I dressed him. So far we have been spared having to change him. We placed the NG tube back in just a minute ago. Sad to see him have to have it again but happy to know that he will FINALLY be able to get something to eat. I can't imagine no food for 5 weeks. We tried oral feeds yesterday. He loved getting something to eat in his mouth but is not yet proficient enough to get a decent amount. He will start Monogen today and hopefully be up to full feeds sometime tomorrow. We also started him on Milrinone yesterday. I can't see much a difference and we weren't sure that we would see any changes but Dr Boucek thought it was worth a try. He has been fever free for the last couple days and we are also going to talk to ID about stopping the antibiotics for now. Dr Baden (who redeemed himself with this next statement) said that we will get an x-ray in the morning and if his lungs look the same we will probably pull the chest tube out!! :) I still may request one or two more days just to make sure that we don't have issues when we start feeds. We will see what he thinks. Most of me wants to totally agree with him and take the darn thing out but I also feel the need to error on the side of caution. I would hate to see him have to go through another placement of one. We will see what tomorrow brings. It only put out 6 yesterday. Weird. Seems we get moved into the ICU and he just starts making changes for the better. I think, personally, it is because he gets to see all his girlfriends now. :)
I am feeling a little more at ease today with the thought of transplant. I am sure that I be wavering back and forth for a bit between ease and anxiousness. All of the components of this make me feel a little uneasy. I have to go through an evaluation to make sure that I am a "fit parent" or something to that nature. They want to make sure that I am responsible enough to follow through with all his needs before he can be listed. I am confident that they will find me totally able! :) Then I will have to meet with the financial counselor. I am pretty nervous about this part. I don't yet know what insurance will cover and what they won't. I am not sure that financial aid will help with the cost of the transplant or not. I am confident in knowing that if it is God's will for him to get a new heart, then He will also provide the financial means to do so. But somewhere inside me....I still feel a little nervous. They will also do dental screening, blood tests, tissue test, and antibody studies on him. That is just the little that I actually know. :( I thought about reading up internet but decided against it. I don't need any additional stress at this point. I will take it day by day and just deal with the pieces that are brought in front of me.
I have some prayer requests today, in addition to Joshua of course. :) We have some little friends that just need to be lifted up. Joshua has a little NICU roommate named Lucas. I don't know what ails him but I know he has had a real rough night. He is 2 weeks old and about as cute as they come. His family had not been here since the afternoon that we moved. I don't know why but please pray for all of them. I also ran into Jen, Gracie's mom, and she is back in the ICU because of Serratia in her chest incision. Please pray for Gracie that she be healed quickly and completely so they may go back home. They are a wonderful family and I would love for them to be able to take her home and just love on her there. Also, Tyler and his family are really having a difficult time right now. He has been having fevers again. He was supposed to have an MRI this morning but I haven't heard that results yet. His mom, Bambi, is really feeling the stresses of being here in the hospital.
Also, my dad is traveling back to Missoula right now. Please pray for safe travels for him as he goes home. It was a very hard parting today. He will surely miss seeing Joshua daily. It was a real blessing having him here with us this last couple months.
Thanks for checking in on us and listening to me "babble". :)
Blessings,
Leah

And the verdict is in......

The doctor's rounded today. They talked about him in conference. I am happy to be in the ICU and to hear the news from Dr Baden. They are going to start screening Joshua for transplant. They determined that he is not getting any better and they don't feel that there is anything that is going to happen to make his heart better. The regurge has now been classified as severe. Dr Boucek is supposed to come and talk to me today. I don't really know what to expect at this time. I know that this is a lengthy process. I am attaching a link from the Seattle Children's website. (They do say that they do 2-5 transplants a year. I think that this really needs to updated. They perform more than that. I personally know 3 families that have been blessed with transplants this year and I have heard of others. I will ask about the # and let you all know. ) If you have any questions please let me know and if I can't answer I will ask. Please pray that the screening goes smoothly and that we can get him listed.
Blessings,
Leah
http://heart.seattlechildrens.org/our_services/transplant.asp

Sunday

Hello Friends,
I just wanted to let you know that Joshua has been moved back to the ICU. I don't know for how long. They will discuss him at conference tomorrow and then I will hopefully have something insightful to tell you all. He has been having fevers again and the Dr's on the floor were worried that if something more happened to him, he would not be able to overcome it with his fragile state. (He has also been having increased heart rate and is on a new med to help that out. We have also added Heprin because of a possible clot in his leg.) I feel more like he is in between care. Not good enough to be out on the floor and not sick enough to be in the ICU. He has had a real good day overall and I am not too worried about the move. It is more like going back to be with good friends! :) You will need to call a new # to reach me 206-987-2040. Please pray for the wisdom of the Dr's tomorrow as they discuss the future plans of our little Joshua.
Love and blessings,
Leah

After the Cath....

Dr Johnston came in and said that Joshua tolerated everything very well. There didn't appear to be any more fluid in his chest cavity so they didn't do anything with his drain. (It got pulled just about out the other morning. :( Bad, bad, bad.) He ballooned his left SVC where it was sewn in and expanded one of his aortic stints while he was in there. The bad news is his tricuspid valve. The pressure in his heart and SVC's is very high. Dr Johnston said more blood is flowing backwards than forwards. They will have to talk about him in conference possibly tomorrow but probably Monday to see what they think they can do. *sigh* I don't know for sure but my guess is that they will get him listed for transplant sooner rather than later. Please continue to pray Joshua and his healing.
Blessings,
Leah

Thursday October 9th

Joshua is now in the cath lab. Please pray that all goes smoothly and that we can find and fix the problematic area so this effusion will GO AWAY!
He had one of his best days yesterday. We took out his NG tube to see if that would help with the gagginess. It WORKED! He is now taking all meds by mouth. He really seems to like them. He did get gaggy again this morning right before his Ativan. I am thinking he is maybe having nausea due to withdrawal. He has not had a fever in few days. His chest tube only put out 60 yesterday. They flushed it this morning and now more seems to be draining but from the looks of the x-ray it is not still accumulating. All good news! I will update you all when he comes back out of the lab. Maybe we will know SOMETHING today. :)

Monday October 6th

Well I just wanted to let you all know that I am back in Seattle. I had a wonderful time at home with James and Trevor, it was very hard to leave!
Joshua looks great. He is retaining some fluid....that is the 1st thing that I noticed. I don't know if he just gained weight while I was gone or if he is holding onto more fluid.
His cath is supposed to happen sometime this week. He has been having fevers still, so I don't know what the plan is exactly. I had a WONDERFUL surprise when this morning Dr Hardy stopped by. Today was his day to be in Seattle. He is going to help get a more consistent level of care so that I don't feel like we are starting over each week. The Dr that followed us here the first time we were here is back from maternity leave and I am really hoping that she will be able to follow Joshua. I really liked her and I appreciated her frank, educational style. Still waiting to hear whether or not she can follow us but I hope that I hear soon. Another thing that we discussed was how important it was to have a plan. His heart function is still pretty poor and his regurge is still moderate. If we need to move forward with a transplant that we should start to get that plan in place.
I also had a visit from the endocrinologist today. They started Joshua on some thyroid medication that he will be on until he stops growing. (With boys does that really happen? :) ) I am glad that I talked to Dr Salerno about that when I did. He is on a small dose to start. They will run another sample in 3 weeks and then we will have to follow up with Dr Randall if we are not here to go to clinic. Wouldn't it be nice if maybe this solved something! :)
Well my friends, it has been a really long day. I will update some more tomorrow.
Leah