Pictures!!!

I am posting some pics of Nathan from right after surgery on. The first one is a little scary but it is amazing how good he looked just a few days after. He has been extremely fussy today. It is going to be a long weekend for us. Hopefully we can get good, clear answers Monday.

New Development

Little Nathan continues to present new problems just to keep everyone worried about him. Yesterday afternoon he became extremely fussy and ended up screaming for almost 7 hours!!! At first we thought it was gas pains, then maybe the formula...nothing seemed to help. Finally he went to sleep around 10:00pm but woke up a few times and seemed to be hurting. This morning was the same so I took him into his cardiologist. After doing an echo he found the problem. The medical term is Postpericardiotomy Syndrome. It was explained that he has inflammation of the heart lining or wall. Dr. Brumund said this is very unusual( go figure..everything with Nate is) and occurs in only about 30% of patients after heart surgery, and hardly ever in children under two. He put Nate on a steroid for the next five days and said this should clear it up. He also gave us a heart monitor for Nate to wear for 24 hours so he can evaluate his heart rate. He said he spoke to the surgeons nurse and she said Nathan has a heart block and this is the reason his heart rate has been dropping into the 50's. Nice info to know don't ya think??? Anyway, we will go back to the doc on Monday to see if the inflammation is clearing up and get the results of the monitor. Nathan is very irritable and is in a lot of pain from this. It's amazing the pain he has felt in his little life. Most adults haven't had to go through some of what he has! He proves his strength every day! I just pray these are minor issues that can be corrected with meds or something VERY simple! Please keep him in your prayers Oh, I am still trying to get some pics up but my mom keeps forgetting to bring me her camera so I can download them on my pc!! Love ya mommy!!!

We are home!

We got home yesterday afternoon! Nathan's echo looked great and he is doing good so we were discharged!! There still isn't any good answers for the stones and we will just have to keep trying to get info on our own. The urologist at Children's said he would just monitor them every six months to see if they are moving which I'm not very happy about. I think someone needs to keep a closer watch on them. So...once again I am going to start contacting hospitals around the US until I find someone who can give me some info!! I will start with Houston and Alabama and go from there. There has to be an answer, I just have to find it!! We will go to the cardiologist Friday to follow up and see if he is gaining any weight! He is up to 3 ounces every three hours which is more than he has ever taken. I will keep everyone informed! I also will be posting some pics this afternoon from right after surgery to now. Thanks Guys!!!

I don't want to speak too soon, but it looks like we may be home before the end of the week! They did the echo today and Dr. Pettitt said it looks great. He says the ASD is closed and the heart is funtioning well.
I just talked to the uroloigist and he says they don't want to do anything about the kidney stones. He says he wants us to come back in six months to follow up. I'm not sure I'm confrontable with this. I may have to try to find a second opinion. The only thing that really concerns me is that Nathan is in pain. Either from the kidney stones or the gall stones and no one seems to offer any relief for him. This doctor also stated that these stones were probaly formed by the Lasix. The thing is, no one seems to know for sure. I am more concerned about why these stones have formed. The Kidney stones could be caused by lasix but I'm told the gall stones are not. I do not believe I will the answers I am searching for when we leave but I will just continue to research on my own. If anyone can find any doctor or nurse who has heard of this please contact me!!!

The good news is we should be going home either tomorrow or Wednesday! His heart operation was a sucess and the docs say this should be his last heart surgery! Hopefully our little guy will begin to gain weight now!

In a Room!!

Nathan has been moved out of the PICU into a room on the sixth floor this morning. Now we are once again able to stay with him all the time. I believe they are going to keep him here for a few more days to monitor him. If they come in tomorrow and say we can go home I am just going to refuse! They MUST check into the other issues before we leave. I just want a plan. His heart rate has been a little better today. One of the nurses said they started a different medicine to increase the heart rate and he may go home on this. We really don't know much info right now, just doing what we normally do...sit and wait on the docs! Being that it is the weekend we may not see them until tomorrow evening or Monday morning. I will get to see Austin tomorrow for the first time since we left!! At least now he can see Nathan since he's in his own little room! I can't wait to see him. It is hard being away from him so much.

One thing I haven't mentioned to anyone yet is Nate's scar. I was a little taken back when I first saw how big it was. it probaly just looks so large because he is so small! Poor baby...he looks like a war veteran! He has the long scar from right under his neck about down to the bottom of his ribcage. Then he has two small scars on the side of that from where the chest tubes were. His groin area has a few puncture scars from the A line and central line! He is quite a sight. I'm just glad he is doing so well through all of this! One day he will be a teenager showing off all of his "battle scars" and will probaly be proud of them!

I am sorry I haven't been able to post any pics. This computer won't allow me to for some reason. I have taken a bunch of pics and as soon as we are home I will post them.

Thanks to everyone for your continued prayers. I will update when I have more information.

Mickey Button!!!

They changed Nathan's g-tube from the bard button to the Mickey today. He has had a lot of problems with irritation around the g-tube site. The GI doctor who first put the bard in saw him today and made the change. The Mickey button is supposed to be a lot easier and shouldn't give him the skin irritations. I hope so. I hope one day we can lose the tube all together...that will be a long time coming. Nathan is still making me worry sick about his heart rate. It dropped off and on all day, getting as low as 59. Then his heart rhythm changed. The nurses showed the docs but I didn't really get any response. They are saying it should work itself out. I'm not sure what to think. It's hard to get any info out of the docs. I plan to talk to their nurse tomorrow and I will also be calling Nate's cardiologist from BTR to see what his opinion is. I trust Dr. Caspi and Pettitt but when they don't talk to you about anything it makes me worry more! I just want to know what is going on!! Hopefully I will get some answers tomorrow!

Update

Yesterday and today have been rather stressful. Nathan is doing o-kay, he just refuses to sleep during the day. When he does sleep it's only for a few minutes and he wakes up SCREAMING!! I think he is just too nosy to get any rest!! He has to see what everyone is doing! They took him off the Isurprell this morning and his heart rate began to drop below 100 again. By this afternoon it was dropping into the 60's!! He is back on the Isurprell and it seems to be regulating the rate. We haven't had a chance yet to talk to the docs about it but they are aware. Their nurse said they will have to moniter this for the next 10 days and see if it will work itself out. If it doesn't she said there is a chance they will have to operate again!! I really can't even think of that possibility right now, it is too scary. I will just keep praying this will work itself out.

Tubes Out!!!

Sorry I haven't posted any updates...I've had trouble getting to a phone line to reach the internet. Nate has had a busy couple of days. Yesterday morning they removed his chest tubes! Then in the afternoon they took the breathing tube out and he is doing well! He was quite a lot to handle! They had to restrain his arms and legs! He was attempting to remove the IV and other lines they have in him! Today was better. When we saw him this morning he smiled at us and looked like Nathan again. They removed his artery line this afternoon so now all he has is a central line in his groin area. They took him off almost all meds except Lasix and an antibiotic. His heart rate is still dropping into the 80's and this is causing concern. Dr. Pettitt started him on a medicine called Isurprill (I think I spelled that right) to try to control the heart rate. They hooked him back up to the pacer but it would not regulate it. They also have him on a med for thyroid, They don't think he has a thyroid issue but they say sometimes this will help to put weight on babies that desperately need it, and we know Nathan needs it! They did begin feeding him half strength formula today and he seems fine. That is probaly why he is happier too! So far everything is going well. We finally got into a room here so that makes us much more comfrontable. As I said, we are concerned about his heart rate but I think only time will tell as to what that means. The nurses say this may be something that has to work itself out. His heart has been through a lot of stress and it may just take some time to work at 100%. I believe God is answering all of our prayers and he has wonderful plans for little Nathan Paul! He truly is a miracle! Thanks to every one of you who is praying so hard for him. It means so much to us! Julie & Sal

Little Fighter

Nathan has been doing a lot better today. They have been lowering the sedation today and he has been moving, or shall I say fighting all day. Nate is proving to everyone that he may be small but he is a fighter. They had to restrain his arms and legs to keep him from pulling his chest tubes and central line out. He opened his eyes and looked at us twice today. All his stats are great and they plan to attempt to extabate tomorrow. They may remove the chest tubes also but we aren't sure yet. Hopefully they will so we won't have to worry about Nathan removing them for the docs! He still has very little bleeding from the heart and they feel this will not cause any problems. Overall I will say he is doing amazingly well. We are so thankful and we are praying he will continue on this uphill route.

As for Sal and I we are still waiting for a room in the spinal unit. We are next on the list so hopefully we will have one by tomorrow. Until then we are camping out in the PICU waiting room which has been eventful to say the least!! Thanks for all the prayers and support. Everyone has been so wonderful to us and we are very blessed to have the families and friends to love and support us. It helps a lot. Hopefully I will continue to have good news to report in the days to come. We love ya'll.......Julie and Sal

Surgery

Nathan had his surgery today and is stable now. The surgery didn't start until 10:30 this morning and lasted about four hours. The docs feel it was successful and say he did really well. The hole was very large so they had to actually put in a patch to close it. He is having some minor complications right now. He is having some bleeding which they are draining from around the heart and they have been giving meds to help clot this since this afternoon. It appears to be working. Tonight his heart rate keeps dropping down below 100 which they are monitoring closely. They attempted to use the pace wires to regulate his heart rate but this is not working so Dr. Caspi ordered to lower the amount of sedation to see if this will help. His oxygen levels are a little off as well so they have been changing the ventilator rate as needed. He made it through the surgery but obviously he still has quite a battle ahead of him. While we are here they are going to be doing a lot of tests to try to find out why he is having so many other issues and see what we can do to correct them. I pray these complications are small and will not continue to cause problems. He just looks so helpless laying there. Please, Please, Please keeping praying for our little one. I will update as often as possible....Thanks..Julie and Sal

Packed & Ready....

We will leave in the morning for Children's Hospital. I have everything packed and ready, all I need now is some sleep! We went to the cardiologist on Monday and in his opinion Nathan is cleared for surgery. He weighed only 9 pounds 7 ounces, which means he only gained 4 ounces four weeks. This only once again confirmed the need for surgery. His pain still seems to get worse by the day and now he is having some minor breathing issues at night. On one hand I am so relieved to be going tomorrow, the other holds nothing but fear of what may come in the days ahead. He will be admitted into the hospital at noon tomorrow and unless they find reason otherwise, he will have surgery at 8:00am on Friday. PLEASE keep him in your prayers. I also ask that you say a prayer for Nathan's big brother, Austin. He has been such a trooper through all of this, even though he is VERY worried about his little brother. He left tonight to stay with my parents so we can get things together and I don't know how long it will be until we are all in the same place again. I think this is one of the hardest parts for me...to have both of my boys so far apart. Thanks to everyone who is taking turns and helping with Austin. He needs prayer and support now also. I will have my laptop with me and will post updates as often as I can. Thanks to everyone and please keep "the boys" in your prayers.

Update

In one week we will be going to the hospital. Time is going by too fast. On the other hand I kind of just want it to hurry up and get here. It is torture to sit and wait for this to happen. Nathan has been doing fairly well. He has pain at times but it comes and goes. We have been feeding him almost round the clock...every time he is awake we try to get him to eat. It would be nice if he could gain a little weight before the surgery but it doesn't look to us that he will. We go to the cardiologist on Monday so we will get a weight on him then. Austin is in Florida with my parents this week. He needs a little vacation! I hear he is having a great time with Grammy and Grandpa! I will let everyone know what the cardiologist says on Monday. Please say a prayer that he has gained some weight!!!