Luau

We had a luau for my brother Steve last weekend. He had told the family he weas in Alaska all year when he was really in Iraq!! We are just very thankful he is home and safe! All three of my brothers and their families we able to attend. It isn't often that everyone is together anymore so it was really special. Even though it rained almost the entire time everyone seemed to enjoy themselves, especially the kids! Greg and Emma, I hope you and the girls are having fun with the rest of your vacation and I hope to see you soon! Steve...you better not disappear ever again! I miss you all already! Enjoy the pics!

Cousin Shaun!

Cousins Madison and Brooke!

Auntie Emma Came To Visit!

Fun! Fun! Fun!

Waiting for surgery

There is not a whole lot to report right now. We are pretty much playing the waiting game. I spoke with Deb in Dr. Caspi's office yesterday. They have decided not to do anything about the kidney stones or the gall stones until after the heart surgery. The doctors feel that any thing they attempt to do would just cause Nathan more pain. His heart surgery is still scheduled for July 14th and we can't do much until then. His pain is starting to intensify but we have been told there isn't anything we can do about it other than give tyelnol. That is the hardest part of all of this. Knowing he is in so much pain and not being able to do anything at all. I just wish I could be the one who has to go through it instead of him. All these issues just seem to keep adding up and I am so scared that his small fragile body can't take much more. In a way I want the surgery date to hurry up and get here so we can begin to fix some of these issues but on the other hand I don't know how I'm supposed to handle any of it. I know going in this time excatly what the risks are, excatly what we will see and excatly how small he still is. He is such a fighter, he has proven that, but how many more problems can his body truly fight being so tiny. These are adult issues that his little body is not strong enough to handle. I just keep praying for a miracle because that is what it will take to pull him through this.

One more thing to worry about!

As if Nathan doesn't have enough going on with him we now can add one more to the list. They discovered today that on top of having many kidney stones, Nathan also has GALL STONES!!! This is where his pain is coming from. They did a CT of his abdomen to see the kidney stones and it shows that they are not moving at this time. He still has the 4mm stone and he also has a 2mm stone on the same kidney. The urologist told us he will not be able to pass either of these stones. Then they did an ultrasound of his liver (just to check) and they found the gall stones. Now, what we do from here is undetermined. The urologist is going to meet with the heart surgeons, and possibly some other docs they may consult, and they will dicuss this to see what the best plan of action will be. We should know something by Tuesday. We will be going back down there for additional testing next week. However, this does not affect the heart surgery. They scheduled it for July 14th. We are no longer going to feed Nathan with a bottle, everything will once again run over the pump through his G-tube. They do not want him to have to burn any calories to eat right now and sucking on the bottle burns a lot of calories. They may switch his formula next week. If there is any possible way to have him gain a little weight before this surgery they want to try. As I said this morning, this is not what we want to happen right now but I realize there is no other option. I will keep everyone as informed as I can.

To everyone....

I write this with a very heavy heart this morning, the unknown is a scary thing.....

We leave today for Children's hospital in New Orleans not knowing when we will return. After all the worry over the kidney stones I finally talked to a Doctor from Michigan yesterday who assured me this situation in not critical at this very moment. He knows the urologist in New Orleans that we will see in the next few days. Nathan, once again, has presented us with a much bigger issue.

As most of you know, we have known Nathan needs another heart operation to close the hole(ASD) which his body battles against. Although his doctors wanted to wait until he was a year old, or older, it does not appear this is going to be possible.

The complications Nathan continues to present all tie into the ASD. The meds caused the kidney stones. He must have the meds to control the ASD. He still only weighs 9 pounds. No matter what we do the ASD is making it impossible for him to gain. His cardiologist has called the surgeons in New Orleans and is turning this back to them. I have spoke with the surgeons nurse this morning and they want us to come today to see the Urologist. They are going to begin the work up to schedule the surgery. The first available date they have now is July 13th. They have to decide if the kidney issues need to be handled first or if they need to repair the heart. They think they will need to do the heart first.

This definitely is not the news we wanted to hear, but we knew it was coming. I am not shocked by this. Looking at Nathan I know this is what must be done. It doesn't make it any easier, but I know the doctors are right. We leave today and will probably be home tomorrow at the latest. They will most likely schedule surgery and begin the process that Nathan will need to prepare.
All the prayers Nathan has received for healing, this may be God's way of doing so. He is the only one who has control and can heal him.

Dana, I have the prayer cloth and I will keep it close to us to have the comfort of knowing the prayers that were said and are being said for our little one.


I will keep everyone updated


Thanks to everyone,
Julie and Sal

Update

Not much has changed these past few days. We are waiting to go back to the Urologist on Wednesday. Maybe then we can get some of our million questions answered. Our families have contacted everyone we can possibly think of to get their opinion on what the doctors will do about these kidney stones but we aren't getting any great results. Nathan has two stones on his kidneys that are 4mm in size. This is huge being that he still only weighs 9pounds. I have been told that there will be no way he will be able to pass this on his own. The urologist told us they cannot attempt to break them up because Nate is too little. I'm not sure where that leaves us. It's like we are just sitting here waiting for a bomb to go off. It's amazing that we can't seem to find any information on this. Everything I have looked up only has advice for adults. We really feel that the doctors are not telling us everything. I just don't know what to do anymore. Everytime he starts doing better something else comes along and gives him more issues. It is so hard to watch him go through more pain. I once again feel completely helpless. All we can do is pray that God will heal him because it is clear to us that no one else can.

Update

Nathan is doing about the same. I do not believe he has had much pain out of the stones yet. This morning he actually threw up a little which is scary being as he has the nissin and should not be able to throw up at all! Its always something with him!!! I have been told by many that kidney stones will make you extremely nauseous so I'm sure that is the problem. My poor little guy. He just goes through so much all the time. I look forward to the day when he is past all these issues. One day all of this will only be scared in our memories. He will hear about it but luckly he will not remember. Austin is out of school now so I stay pretty busy between both the boys! I am still trying to organize the wedding pics and I will post some of those soon! This is a pic of me and Nate...or Nate's HAIR!!!

We are home

After three days in the hospital we are home this morning. The plan of care for Nathan is a little unclear still. He does have quite a few small kidney stone and two rather large stones on his kidneys. The larger ones are about 4mm in size. This may not seem that large but when you think about how little Nathan still is it gets kind of scary. All of the stones are still on his kidneys. Being that Nathan is so small they really cannot do much to help with the passing of these stones. We now will add yet one more doctor to our list and will begin seeing the Urologist once a week in order to monitor this situation. There is no guarantee that we will not be admitted again soon. We just have to watch for dehydration and fever or any other complications. Nathan is happy and doing great this morning. Sal and I think he just wants to make sure he has EVERYONE'S attention!!!! I will keep everyone updated as often as I can. Thanks, Julie and Sal

Tough Little Cookie

Hello to all. Nathan has once again found a creative way to keep Sal and I on our toes. Yesterday afternoon when I changed his diaper it was full or blood. After calls to two doctors we took him to OLOL ER. They cultured the blood in his urine and once again found no infection. After another ultrasound of his kidneys they found MANY, MANY, MANY, kidney stones. They said the new medicine that they just switched him to is causing this. They claim that we may need to find an alternative method and take him off of the diuretic completely. Needless to say Nathan has been in severe pain off and on. The ER gave us tylenol with codeine for pain but warned us to not give it continuously. The tylenol will reduce any fever he may develop and we need to know if he starts running any fever. I gave him the med last night to help him sleep but have not used it yet today...so far no fever. He has slept most of the day and when he is awake he is uncomfortable. We will be taking him into the Cardiologist in the morning ( unless he gets worse today and we go back to the hospital) and just to let everyone know the ER docs feel that he will probaly be admitted when these stones begin to pass. He will need extra fluids and if he is in the hospital they can help him with the pain. We ask that everyone please say an extra little prayer for our tough little cookie to help him get through yet another battle. Thanks to all and I will update this blog daily to let everyone know how he is doing.