Friday, October 30, 2009

Yesterdays Pre-Op Physical went well overall. We explained to Jaden where we were going and what we were going to do. When we got to the hotel he kept saying he wanted to go home. I asked him why and he said, "the Dr.s will shock me." I am not sure where he got that from or if he meant giving him a shot. He said that again when we were at the Dr.s. Jaden was scared the whole appointment and when they wanted to do the EKG, he was crying and yelling no. We tried everything and nothing worked. We had brought his doll JoJo who taught Jaden how to go potty in a potty chair and we hooked up the EKG stuff to JoJo but that didn't help. We ended up having to hold him down with the help of two nurses. Once we got the stickers on and everything plugged in, it was very quick with no pain. He was a big boy for his x-rays and stood exactly as he was told. I was so proud of him.

The surgeon came in and introduced himself. He is the Jr. Surgeon and his name is Roosevelt Bryant III MD. We did not know that he was going to be the primary one doing this surgery. He has only been doing surgeries for 2 years now. Sal and I were quite nervous for awhile. Then after getting to know him, we started to feel more comfortable. We asked him how many Fontans he has done and he said about 60 in the last two years. Dr. St. Louis who is the SR. surgeon will be doing the surgery as well, just not as the main surgeon. He is the one we thought was going to be doing it in the first place. So as we sat and asked many questions about Dr. Bryants medical history and his personal life, in the end we felt confident that he will do a good job. A friend, Jill, told me one day when we were talking at Northcrest that "two heads are better then one." So I kept telling myself this as the fairly new surgeon was explaining all that was going to happen. Hopefully with the two of them doing the surgery, if a problem arises a better decision will be made.

Dr. Bryant said every single thing lines up wonderfully for Jaden to get this surgery except for one thing. I thought when he said that, "give me a minute to prepare myself." Sal and I had not been given any indication before this point that there were any kind of issues. When all of the team met at their Friday meeting, this was brought to all of their attention. Due to Jaden having the stent, this is where the problem is. The stent is in the main artery where the blood will flow from the heart to the lung. The reason this is a problem is because the side where the stent is, is more narrow then the other side so blood will not be equally flowing to the entire body. No one at the meeting could make a decision about if they should enlarge it more at surgery or leave it be. They decided they can only make this decision when the chest is open and they are looking at the heart. Where the stent is, is very hard to get at. So the complications, if they leave it alone, his body may not be able to function properly with the uneven blood flow and they may have to go in later to do another heart cath to try and enlarge it. The problem with this is you run the risk of the stent popping and then he could die instantly. (This is the problem anytime a stent is dealt with). If they do it in surgery and it pops, then Jaden would already be on Bypass so they could just repair it if that were to happen. Doing this would cause more complications though and possible more issues in the future. So they do not know the best option. Jaden could be fine with the uneven blood flow or he may not be. Either way is risky so they just want to wait to see what all they are dealing with when they open Jaden up.

So lots of prayers: 1. for our family and Jaden to stay 100% healthy from now until surgery. 2. for the surgeons to be completely rested and comfortable the day of the surgery with a clear mind. 3. for the surgeons to make a wise decision when they are looking at the stent and what to do with it. 4. for Jaden to stay strong through all of this and come out of the surgery with his strength, strong will, and spunky attitude he always has. 5. for us to be able to stay calm and know that God is with us all and to help Ash & Ethan work through it appropriately as well.

Like I said, lots of prayers are needed. But I told Dr. Bryant, I was going to take a picture of his 6 year old son and put it next to Jadens face so that he treated Jaden like his own. Dr. Bryant said he would do that even without the picture. After I said that, Jaden started poking him and hiding from him and Dr. Bryant then instantly fell in love with Jaden. After Dr. Bryant left he even came back in trying to give Jaden a piece of candy. So now Jaden has his surgeon wrapped around his little finger which is exactly where I want him to be.

Jaden was a wonderful boy yesterday and he endured a lot but didn't act up or whine or anything. We were so proud of him and how well he handled his very long day.

Tuesday, October 27, 2009

We had a scare yesterday thinking the kids might be sick again. Sunday night Ethan had a low grade fever. I was like "great not again." I checked it 30 min. later and no fever. So then I was like "this is strange." I checked it again in the middle of the night and then Monday morning and still no fever. We decided to keep Ethan home from school just in case. Ashley also was complaining of a stomach ache Sunday night and then Monday morning so she stayed home as well. As the day went on, they both showed no signs of feeling yucky. They were contained to their rooms with only reading available to them and masks on their face all day. False alarm I guess. Hopefully nothing still comes of it. They went to school today and seemed just great this morning. We used the diffuser all day yesterday and moved it to every single room. We also rubbed oils on all 3 of the kids chests all day long.

Sal and I will be taking Jaden down to the cities Wednesday night for his appointment Thursday morning. We are going down the night before because we will sit in traffic for hours if we go the morning of. My mom will come and stay the night with Ash & E and then take them to school in the morning. Thanks mom!!! Krisin, I was a little confused as well why we are doing his physical the week before. I guess the only rule as far as the physical goes is we can do it out one week. I would think they would want it to be the day before but 1 week out is fine. It will be long for us as it will be 3-4 hours long. We will do an echo, chest xrays, blood work, meet with the Cardiologist and meet with the Surgeon. We have never met the Surgeon so I am very anxious to meet with him and ask him questions. Hopefully Sal and I feel very confident with him, his experience and his ability to do such a rare and difficult procedure.

We will then go down next Tuesday to check into the Ronald McDonald House for surgery on Wednesday. We will bring all of our pop tabs that everyone has helped collect on Tuesday and turn them into the office. Wait until you see the pictures we took with the pop tabs this past weekend. It was very fun. We will have access to them in a few days.

That is all the updates for now. Jaden is staying healthy. We just need prayers that he does not get any bugs in his system when we go to his Dr. appointment on Thursday. I am very nervous about that. We will try and have him wear a mask if he will cooperate. At least while we are in the public areas.

Monday, October 19, 2009

The weekend went really well in our house. Pretty much everyone is done with their colds. We even dared to go to the mall for a little bit to get the kids some winter gear (we found hand sanitizer in many locations around the mall and definitely used it each time we found it). Now we just have to keep the colds away for the next few weeks so that we don't have to reschedule surgery again.

There are only 38 days until Thanksgiving. There are 16 days until Jadens surgery. The average time of stay in the hospital after this surgery with no complications is 5-14 days. That leaves a window of 8-17 days leeway to not be stuck in the hospital for Thanksgiving. We spent Thanksgiving in the hospital 2 years ago. We also had a stay in the hospital 1 1/2 weeks before Christmas and then another time a few days after New Years. I think we have had enough holiday time in the hospital.

So we are working hard on keeping those pescky BUGS out of our house.

Thursday, October 15, 2009

So Jaden's pre-op physical will be Octber 29th in the morning and then his surgery will be Nov. 4th. We will have to be to the hospital at 5am with a start time of 7am. So hopefully we can get him healthy and extra strong by that time.

I just want to say thank you again to everyone for your constant support and love. It has really helped keep us strong and looking forward not backward. We are very blessed by all of the support you all give to us each and every day.

Tuesday, October 13, 2009

So we made the call to the hospital and cancelled Jaden's surgery for Friday. It was so hard but we knew he just wasn't going to be rid of his cold. It is just hard as we are going through all of the emotions of actually doing the surgery but also all of the planning for kids, work, school, activities, dogs etc... The planning is hard on us and then it keeps changing. I have to remind myself that this gives us that many more days to load oils on Jaden and get him even stronger for the surgery.

Ms. Leslie from our school, SCCS, reminded me "In God's time it will happen." This is true and I know this. I just sometimes try to think I can make the plans because it is best for our schedule, for our lives. It was a nice reminder thought that God is in charge and we need to listen to Him.

So Sal and I will look at the dates the hospital gave us and try to decide which date would be best for all of us. Ethan and I prayed about it on the way to gymnastics tonight that God would help us make a wise decision on the best time to do the surgery. Then Ethan said, "mom you said a very nice prayer." It was so sweet and touching that he felt compelled enough to tell me that.

So I will let you all know what the next surgery date will be.

Monday, October 12, 2009

As of right now, Jaden still has a pretty yucky cough. Sal said last night he thinks we should call to reschedule his surgery. I told him we had to at least wait until Tuesday morning if not even Wednesday morning.

We are putting Essential oils on him every hour. We started this saturday. We are using oils that are recommended for colds, and respitory issues. So please pray extra hard for the health of Jaden. We need to have this surgery this week. I need it so we can move on. I also need it as it works out so well with the kids not having school and other scheduling things. I understand if he is still not well that we need to reschedule. I just pray we won't need to.

Please keep the prayers coming strong.

Wednesday, October 07, 2009

The date is set for Jaden's surgery provided he is healthy of course.

Jaden will go in for his 3 hour pre op exam next Thursday the 15th. He then will have his surgery Friday the 16th. We will have to be at the hospital by 6am with a surgery start time of 8am.

This worked out perfectly because the kids have Thursday and Friday off of school so they will not have to miss any more school. We will go down Wednesday night and check into the Ronald McDonald House. The kids and Sal will stay all weekend and then head home Sunday afternoon.

Of course all of this depends on Jaden being healthy just to do the surgery and then the surgery going with out flaw and his recovery on track.

So keep the prayers flooding in for our family to be healthy. Jaden right now is fighting something. His nose is running, he is coughing a lot and he is tired. Sal is also having a lot of the same symptoms. So we need some extra focus on health.

Friday, October 02, 2009

Life is always so full of excitement in our house. We got released from the hospital yesterday around lunch time and went to the Ronald McDonald House to pack and clean up. We got home around 2:30pm and the boys went downstairs to play Lincoln Logs. Around 3pm Sal comes running upstairs carrying Jaden who has blood running down his face. Apparently Ethan and Jaden decided to throw the Lincoln Logs at each other and one hit Jaden right by his eye. With much debate and even more hesitation, we took Jaden to the emergency room. Candise had just gotten here so she stayed with Ash & Ethan while Sal and I took Jaden to the ER. Two hours and three stitches later we got home. As if Jaden needed anymore Dr. poking needles in him.

So then today I take Ethan to the Dr. because he has been sick since last Sunday with a fever on and off and a cough getting worse each day. He still was his wild self and had plenty of energy and no other symptoms. I knew he did not have the flu but we have been having him wear a mask all week just in case. So the Dr. checked for Influenza which came back negative. (I knew that) They also did an xray of his lungs because I thought it was something related to his lungs. This morning I had even looked in my Essential Oil reference book at Pneumonia. Well the Dr. came back in with the xray results and sure enough Ethan has Pneumonia. Isn't that just dandy?! Just what we needed, more drama. So Ethan will continue to wear a mask, we will use oils on him and he will take some medicine. Hopefully he will be better by Monday. He missed this entire week of school and he will have to miss more school when we go back for the surgery.

The team of Cardiologists, Surgeons, Anastesialogists(sp) and all others who will be involved in Jaden's surgery met this morning. If they don't call us by Monday afternoon with the action plan we will call them. Hopefully we will have a date soon so we can finally sleep after 3 1/2 years of waking up every single night to check on Jaden and give him 1-3 bottles of Pediasure to help get his weight on.

Hopefully this weekend is dull with absolutely no action.

Thursday, October 01, 2009

Jaden did awesome overnight and slept like a baby. Me and the kids stayed at the Ronald McDonald House and Sal stayed at the hospital with Jaden. Sal slept on the fold our bed next to Jaden's bed and all night Jaden slept half on his bed and half on Sal to make sure Sal was always there. How sweet.

This morning Jaden was pretty puffy and had been retaining a ton of fluids. He has been moving around more and has started to release some of that fluid. He ate some breakfast. Some of his favorites; 2 slices bacon, 1/4 of chocolate chip pancake, a half of a hard boiled egg, half a carton of milk. For Jaden that is great. He usually won't even eat breakfast.

We get to go home as soon as they get the paper work done and the Dr. comes to see him again. All of the Dr. and cardiac team are meeting tomorrow morning to talk about Jaden, what needs to be done and to set a date for the surgery. It may not be next week. But we are hoping it is. We want this over and done with.

Thanks as always for all of your support.