It is official!!

I have in my hot little hand the OFFICIAL TRANSPLANT LISTING paper!! We are now officially "waiting". They will be getting me a pager so when the best possible heart match for him comes available they can reach me. Most likely I will be right around the hospital but this does offer me up some freedom.
I have had people ask where on the list he is. Let me start by saying there are other babies waiting that are in much worse shape and critical need than Joshua. However many factors come into play when they get listed. Joshua is currently the only blood type "O" waiting for a heart in his weight range. Consequently he is #1 on the transplant list based on the sorting factors. There are other babies here that are also listed as #1 but they have different blood types and weights than Joshua. Joshua is basically just listed as #1 in his category. Please do not think that he is #1 because he is in a critical state! Yes, he needs new heart, but he is stable and doing well. PRAISE THE LORD!!
I want to thank Jen, Paul and Gracie for the BEAUTIFUL flowers!! The vase is a pumpkin. :) It is so festive and beautiful. I have been here for several months and have managed to maintain complete composure.....with the exception of the last few days. So Jen and Paul~ your timing could not have been better. You have no idea how much this lifted my spirits! Thank you! :)
I am also excited to tell you all that Chubbs will be coming to stay with me for 2 WHOLE WEEKS! I am SO SO SO excited. We will conclude his stay with his 7th Birthday celebration. I cannot believe that he is 7 already. He is such a little man. I am so blessed to have him in my life. He is so wonderful I can hardly believe it. :)

HIB Update

The last piece to our immunization dilemma has been taken care of!! Part of getting Joshua ready for transplant was to make sure that he was up to date on all his immunizations. We were able to give him all but the HIB shot. Seemed there is a little shortage of this vaccination. I had even resorted to calling Missoula to see if we could get a dose from his pediatrician, who unfortunately was out of the office for the week. The nurse was concerned about the refrigeration required.

BUT....the pharmacist, I believe, was able to plead his case to the manufacturer and actually get them to agree to get us a dose by FRIDAY!! The regular shipment is 1-2 months out. This is a spectacular miracle!!

***Go down below the post from yesterday. The video actually worked!! :)

John Hancock

So~I have signed Joshua's consent for transplant. :-) I am overwhelmed, excited and nervous.
I will update again when he is actually listed....TODAY!

Prayer request~Please add the Lynn Montgomery family to your prayers. Dr. Montgomery was my OBGYN with Joshua and also monitored me when I was pregnant with Trevor. He died suddenly of a heart attack while playing hockey last night. He leaves behind a wife, two young sons and a grieving community. He was an AWESOME doctor that touched many lives!

I know....I know.....

I did it again....waited a week to post.

So. Where to start. Joshua was moved back to the floor last Wednesday. :) We are in Room 4025 now. One door down from the other space. This room is ok. It is a smaller but it does the trick. I don't think I would complain much if the shower was bigger!!

It has been a pretty quiet week. Joshua was in a little funk for a few days. But was much better come Saturday.

I talked to Dr Law today and was told that the transplant is a go and we can get him listed. I wish that it didn't have to be such a complicated case. He has some good things going for him. He is healthy and big. Being bigger really has an advantage as far as getting hearts goes. He is also post Glen which is good and most certainly in his favor. He has some issues that are certainly not going to work in his favor. Pretty scary scenarios but the fact is he is not going to live without it. He may or may not live with it but at least there are odds. This is most certainly a time for prayers!! He is sensitized. His percentage is over 90%. That means that his body is going to aggressively attack a heart from over 90% of the population. They are going to be talking to experts to see what can be done to help with decreasing the chance of rejection. We would LOVE to see him have the opportunity to have a "negative" heart. The chances are super slim so we will probably accept a "positive" heart and do what we can to get Joshua's body to not attack. They have done this with success but there is no real data one way or the other. He is also at a higher risk for rejection later on because of these antibodies. He is also going to be higher risk because of his double Glens. It will make for a very tricky and complicated surgery. One of the fears is that he will have limited blood flow and would have to have stints placed. There is again high risk because they will be located at suture sites. The risk is that while ballooning to create better blood flow and reduce pressures, he could bleed out. We would certainly hope that none of things are issues but we all need to remember that this transplant is in no way a fix all and comes with high stakes.

Dr Law also talked about replacing his PICC line with a Broviac Line. This is a more permanent line. There is data to support that this type of line carries less risk of infection.

So....what does all this mean? Soon, we will probably see him go to IR for the new line placement in the near future. He will finish up the catch up immunizations and the Doctors will talk to the experts to see what the plan is for the immuno-suppression. The Transplant Coordinator will be in to talk to me and get my consent for the transplant.

The most shocking news to me today was the fact that Dr Law didn't feel that we would have him listed for as long as I had decided he would be. :) (Not that we have any pull in this department.) He just said to get ready and get mentally prepared....this could all happen very quickly. Going home in the next few months may be a reality.

I told him I will be patient and I will be here as long as Joshua needs to be. I don't care when I get home as long as Joshua is with me.

Blessings,

Leah

*** so after such a "heavy" post thought you should have some happy thoughts to take away. These were taken this afternoon. He is getting SO strong.

Being a ham

Update

Well Joshua is still in the ICU. I assume that he will be moved tomorrow. Seems there were no beds on the floor. Gives me one more day to recoup! :)

I met with Dr Law. It seems that Joshua's antibody study is done and he is what they refer to as "sensitized". Evidentally he has a really high level of antibodies built up from the cavadar tissue that they used to build up his aortic arch. This really complicates things but I wish I could explain it to you. I will be reading up and gaining knowledge and then I will let you know more. There are plans in place if he is accepted to go forward with the transplant. I will fill you in on the details as I better understand them.
For now please just pray that he remains healthy and strong and that the Dr's are making the best decisions possible for him.
I also am reaching out to you to please pray for us as a family. We need to make some pretty big decisions about where the children will be located while James is in treatment and we are waiting for Joshua's heart. Right now Trevor is living with Grandpa and Grandma but he is really missing me.....probably not NEAR as much as I am missing him. I have thought about moving him here with me and home schooling him but that opens up many other issues too. I hate not having all my children with me together. As a mom you never plan on having your heart in so many places. Each one of them holds a section and I just don't feel complete without all of them by my side. I know that it will happen as it is supposed to but right now I am just having a very hard time.
Please love on your little ones a little extra today. :)
Blessings,
Leah

The order is in....

We are going back to the floor. Joshua has been doing really well so they feel that he can go back to the floor. He is still on the Milrinone but I guess if you are waiting for transplant then you can have that and still go to the floor. He has been doing really well. Last night when he was sleeping his heart rate was......<<<<>>>> 128!! WOW
He only stayed there for about 15 minutes but hey...128! Yesterday he was pretty much in the 140's awake and 130's asleep. Today he has been in the 157-163 range. His O2 has been in the high 70's to low 80's. He has been full of smiles.
Oh, and I must also mention his new talent. He is the KING of blowing raspberries!! Pretty fun.
Dr Law is supposed to come and talk to me today. I am so glad that they will be following him on the floor.
Love,
Leah and Joshua

FINALLY!

I am finally feeling better and was able to go to see Joshua. His nurse said she thought it would be a good idea for me to come up because he was in a funk. I put on a mask and away I went. :) He was very happy to see me and perked up. We played for a while and then he decided it was nap time. It took him a while to settle because he kept making sure I was still there. I did sneak out when the nurse came back from lunch. It is VERY hard to sit there wearing the masks for too long. :-(
He seemed to be doing pretty well although he is a little puffy. Dr Jeffries is on this week and has already started making changes to get some fluid off. I also got to chat with Dr Law. We are going to be meeting tomorrow to "talk transplant". They were waiting for a sonogram of his abdomen to see if he has another effusion. Looks like he has something going on but probably not enough that itneeds to be tapped. HOPEFULLY.
I will be going back up after supper to hang out with him again for a couple hours.
Love,
Leah

Sunday Night

Well~I still can't go to the hospital. I am starting to feel better today but the nurse asked that I not come in. :-( I asked the nurse tonight to call the charge and see why I can't come in with a mask for just a little bit so that I can see my baby. It is killing me not being able to see him. It has almost been a week. It was one thing to miss him and know that I was 2 states away....it is another to be a block away.
I hear that he is doing ok. Still on oxygen. They slowed down his oral feeds and started him back on TPN today. His xray this morning showed that he has extra fluid in his lungs.....sounds like the effusion is sneaking back. I guess the plan is to slow down the food and hopefully his body will absorb the extra fluid. (I think...I have not been involved in rounds so I can't say for sure.)
I am very thankful that Meredith is with him tonight. FINALLY a nurse that I know!!! This whole week that I have been out I have spoken to people that I don't know. I don't like the feeling of not knowing who is with my baby. *sigh*
Conference tomorrow....not sure if Joshua is up for discussion or not. Dr B asked to reschedule out transplant meeting until I am better. I will update when I know something. Please pray that I will be able to kick this cold soon and be able to be there with my baby!!
Take care,
Leah

Friday

Hello friends,
I don't have a lot to tell you because I am still not going to the hospital to see my little Joshua. It is killing me, but I know that a cold right now could really set him back. It is better safe at this point.
So, I am a little saddened that I was not there today when they TOOK HIS CHEST TUBE OUT! HOOORAY!! :) I have called several times and they always say that he is doing good. He spent some time in the exer-saucer playing and enjoyed that. I miss him so much!
He did spike a temp today so they are running all the cultures on him.
I met with the social worker today. That went pretty well. I really like her so that helps ease the old nerves. They ask a lot of questions but nothing I can't handle. Now.....she did say that I was one of the most sane people that she had ever met.....HHHMMMM???? :)
Also, please be sure to add Trevor to your prayer list. He is sick right now. He was crying and asking me when I was coming home so I know he is not feeling well. It absolutely breaks my heart that I can't be there to cuddle with him when he is sick. :-(
Love to you all.
Leah

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