Jason is gaming for charity!!!

Yes, for 24 hours straight Jason will be playing games for Boston Childrens Hospital!! Here is the information page.

https://www.hospitalshelpingkids.org/ExtraLife/m.aspx?i=20859738F9BE678C5

He is very excited about this. Not only will he benefit the hospital that will be a part of our lives for many many years, he will also get to play games for 24 hours straight (and I cant complain about it!) Win win I tell you!!!!

My role will be to keep the kids occupied and of course bring him all the caffeinated beverages he needs. Cant he do it!!!?? He has had a lot of practice for sure!

Thank you all for supporting him. It really means a lot to us. We not only want to raise awareness for Congenital Heart Disease but we also want to support one of the best hospitals in the country. The children who go into Boston Childrens Hospital need our help. Lets be there for them and show as much support as we can!!!!!

Hope everyone is doing well!!!

Laura

Cleared for SIX MONTHS!

Nathan had his cardiologist appointment today. Dr. Breitbart said he looks great and he doesnt need to come back for 6 months! :-) So happy!!!!

Hope Everyone is doing well!!

Laura

Magic Cream Worked!

Hello Everyone

Well, Im happy to say that Nathan's incision is healing very nicely!!! Sorry I havent updated sooner. I guess things have gone so well I havent thought about blogging:-) He is still not sleeping 100% and he isnt eating. All of this is to be expected. Hopefully he will start improving in those areas soon. But no rush! We are just thrilled his incision is looking so much better. We are still keeping it covered...just until it heals all the way....Im not taking any chances.

It is cooling down here in New England. Jason and I are loving it here. We have taken the boys to several places. They are enjoying it and Im going to get them involved in a playgroup starting next week. We miss everyone though:-( But we are having lots of visitors so that helps.

Hope everyone is doing well!!!

Another Doctors visit...

Last night Jason and I noticed that once again Nathans incision was getting red and more swollen. It was late and Nathan didnt have a fever so we decided not to take him in to the hospital. Instead we waited until this morning and went to see his regular pediatrician. Honestly I dont know what is going on with it. It isnt a full on infection. But it isnt healing properly. It is extremely red and puffy and oozing. It is only about an inch. The rest of the incision is completely healed.

So the doctor said that he was "alittle" concerned. But he is willing to try a topical cream. Im happy about this. I am praying that the cream does the trick . I will admit that I really dont want to go back to the hospital. But of course we will if Nathan needs it. Jason and I are really tired. We would like this rollercoaster to stop. We were talking this afternoon and both of us just cant believe how some parents cope with an even sicker child. I cant even think straight these days and had to be convinced that it was 2010 by the lady at the doctors office. My brain just isnt working!!

I am sure Jason and I have learned a lot from this experience. I like to go back and remember things that I have been through and tell myself what I have learned. With this experience I know there is something but I think I wont know exactly until things start to calm down:-) God really doesnt give you more than you can handle. Just when Im about to break I feel him give me that extra push I need.

Im sure this incision thing will eventually work itself out. I just wish we knew what was causing it. Ill let everyone know how it goes with the cream!!!

Please keep praying that it works!

Laura

Update on Nathan

Hello Everyone!

Just wanted to give everyone an update on how Nathan is....

He is doing really well. Since being discharged from the hospital for his infection he has been healing nicely! He is playing and for the most part he has been in a good mood. He hasnt been eating very much and sleeping has been an issue. I started giving him motrin at night and that seems to help. Sometimes he will grab his chest (where the incision is) and say ouch. So Im thinking he is still sore.

We have been staying close to home these days. I still feel that he needs to recover. It has been almost a month since the surgery, but looking at Nathan you could never tell. So I think it is up to Jason and I to pace him. He thinks he is 100%! :-) The best thing is he is PINK! He has pink lips and pink hands and feet. Im thinking his oxygen level is around 93%:-) So nice to see him that way.

We took a small day trip to Maine last weekend. The boys had a great time! We are looking forward to the Fall. Thinking of taking a trip to Connecticut to see the leaves change! I bet it will be beautiful.

I will keep everyone updated. But Jason and I are looking forward to a very very boring year.:-)

Love Everyone!!

Laura

We are HOME!

They discharged us yesterday evening. It is SO GOOD to be home!!!!! Hopefully we wont have to go back for a very long time!

Nathans incision is healing. They gave him some oral antibiotics to go home with. So hopefully that will clear it up completely. We will be staying close to home all week just relaxing! That is if Joshua and Nathan dont go stir crazy. :-)

Today is Jason's birthday!! Im sure he is happy to have everyone home. We dont have any plans really. I think we may just celebrate this weekend.

That is all for now!! OH WAIT NO I HAVE MORE.....

The best news ever is Nathan is in NORMAL SINUS RHYTHM!!! No more heart block and completely in sinus rhythm:-) So happy about that. We found that out Sunday but didnt want to say anything until his own cardiologist told me. HOORAY!

Hope everyone is doing well! Thank you again for all the good thoughts and prayers. They are helping more than I can tell you. Knowing that Nathan has all these people behind him is so wonderful. Im sure he will enjoy reading this blog when he gets older and he will be so proud of himself for all that he has gone through.

Laura

Nathan is back in the Hospital

Well Nathan was admitted to the hospital Friday night. He has an infection on his incision:-( Poor thing!!! It is pretty nasty. He is on IV antibiotics. We will be here for awhile. The surgeons want to make sure they get all the infection because they do not want it to reach his heart. Also - we are making sure the IV antibiotics work because if they dont (or dont work completly) they will need to reopen the site and clean it out. :( Something we DO NOT want.

Nathan is doing good. He is playing and LOVES riding around the hospital in the wagon. So we do that A LOT!!

Please be thinking of him. I know this will be behind us soon. He has been through so much and this just sucks that he has to be readmitted.

Hope everyone is doing well!!

Laura

Nathan's Pediatrician Visit

Just got back from taking Nathan to the doctor. He said Nathan looks great! He is eating and playing like he should! However right before we left the house for the appointment Nathan starts coughing and vomits EVERYWHERE! BLAH! It was nasty. But it is just from all the congestion. Hopefully that will clear up soon.

I really like his new doctor. He was very nice. I have known for awhile that Nathan is behind on his speech and this doctor wrote us a referrel to a speech therapist. I will let everyone know how that goes. Hopefully Nathan will be talking up a storm in no time!!

Nathan has a cardiologist appt on Monday!!!

Hope everyone is doing well!

Laura

Hard Nights

Nathan isnt sleeping well since being home. He tosses and turns. Wakes up at least 7 times a night:-( He cant breathe out of his nose so I know that is causing some of it. But it also seems he still might be in some pain. So we continue to give him motrin and tylenol. He is also still coughing a lot. Tomorrow we have an appointment with a pediatrician so Im curious to hear what they say about it.

Today Jason went back to work. I am going to miss all his help!!! But it will be nice to get back to normal.

Ill let everyone know how the appointment goes!

Laura

Wow - Its starting to feel normal

Today we took the boys to see a movie. Only a week ago Nathan was in ICU. Cant believe it! We still have to pace him (he thinks he is 100%) But today we decided to go somewhere low key. He did great!

His nurse came today and she said he is getting better and better everyday. He is still very congested so we are trying to do chest PT to help break that up.

I can not believe all this went by so fast. We have been getting ready for this surgery for months!! I know he has a lot of healing to do but Im so glad he has done so well. With the big move here and getting ready for this it has been very stressful. Now the move is over and the surgery.....seriously what am I going to focus on now!?

First Day Home

Nathan is enjoying being home. He is in alittle pain but hopefully we can get that under control. He has been very moody:-(

Last night he slept SO well in his bed:-) And so did I! It was so nice.

In the hospital after he woke up in the morning and after his nap we always took him on a stroller ride around the hospital. Well we have a stroller at home by the front door and sure enough he wants to be pushed around the house when he wakes up:-)

The in home nurse came this afternoon. She was a big help. Nathan has been throwing up his medicines so she gave us a few ideas. Checked his oxygen level and his scar. All the regular stuff. He looks good. He will have another in home visit on Friday.

Other than that not too much to report. My mom left this morning:-( She was a HUGE help!!!!! I miss her. Jason's parents leave tomorrow:-( It was so nice having all the help. His parents were amazing! Couldnt have gotten through all this without them.

WHAT??? ARE THEY REALLY GOING TO LET US GO????

Dr. Breitbart just came in and said goodbye!!! :-) Nathan is well enough to go home!!! WHOO HOOO we made it!!!!!! Cant believe this is behind us. Im am so so so so so excited!!!!

We should leave in about 3 hours. We actually had a roommate last night so it was kinda hard. Poor little boy did NOT want to be here. Nathan kept saying "Baby BIG boo boo!!" It was sweet. But we were up almost all night.

Nathan still has a few issues but nothing we cant monitor from home. We will have a nurse come to the house to check on him too.

Oh also my wonderful brother got a maid to come to the house and she is cleaning right now:-) Thank you Mike!!!!!

Here are some pics of Nathan. The best one is of him and his WONDERFUL doctor!! We are so blessed to have such a great doctor!! He is AMAZING:-)

Pics of Sunday

A few pictures of Nathan! He was playing all day!! Also he decided to take a nap during his ekg:-)

Monday

Yesterday Nathan forgot he just had heart surgery. He was walking, crawling, bending, talking, laughing and even road around on a tricycle. Seriously how can he do this?? He is on the road to a full recovery for sure.

He is still in junctional though. And has 1st degree heart block. So we will be here for awhile. The pacing wires are still in. He has an echo today along with a chest x-ray.

Overnight we had a junpy nurse. She was sweet but when Nathan turned over he would losen his finger probe and his oxygen sats would go down. Instead of repositining him she wanted to put him back on oxygen. Well I wanted to make sure he was indeed dropping, which he wasnt...it was the positon of the finger probe. So it was a bit of a fight to keep that oxygen off! Which he hates and I really wanted him to have a good nights rest.

Today the playroom is open! He will LOVE that!

I will post pics of yesterday as soon as Jason gets here.

More to come!

Laura

Sunday Update

Nathan continues to improve everyday. Last night we had NO issues. He kept his heart rate up and oxygen level at around 83. It was easier to get in bed with him because he had a lot of wires out yesterday. I PRAYING they say we can take the pacing wires out today. But we will see....please please please!!!!!! He did wake up really early (5:15am) But he has done that to me at home so I guess he is just ready to start the day!

Yesterday he walked! I thought it would take him awhile to get up....not this boy! He was READY!! The nurses opened the playroom (usually closed on weekends) for him. He play for 40 mins! Then I had to take him back....he needs to pace himself! Im attaching pics.

Other then that not much to report. He is eating AMAZINGLY! He even had a salad for dinner. The nurses were impressed in seeing a 2 year old eating salad:-)

More updates soon.

Saturday Update

Nathan is still doing great! He is resting now. We had a few issues overnight. His heart rate would drop very low and the surgeon was called. But the surgeon said that as long as all his other stats were ok then he was ok with him being low. So it wasnt too bad. He is also having some issues keeping his oxygen sats up while sleeping. So we need to figure out why.

This morning we went to get a chest x-ray which came back ok. He got to take his last IV out!!!! The IV was in his foot so he hasnt walked yet. But after naps we should do that. He is eating well and playing. He is still in junctional but the doctors again said that he is doing fine with it. He also has 1st degree heart block. But again, his blood pressure and everything else are normal meaning he is handling it well.

My step-father Larry made us some relaxing CD's so we have been playing those. And boy are they RELAXING!! I think Im more relaxed now than I have been in DAYS! Ummm.....maybe that is why Nathan's heart rate goes so low:-) He is just so relaxed listening to the CD's and cuddling with me:-) Which he is loving getting out of bed and sitting with me in the chair. He lets me do his chest PT and just drapes himself over me and gives big hugs! It is adorable. The PT will help move some of the fluid around his lungs. Just patting on the back and stuff like that.

Joshua came to visit (will have pics up soon) They LOVED seeing each other!! It was very special. Gave each other hugs and kisses, it was great.

My mom and I are here today and Jason is with his parents and Joshua. Mom and I are going to work hard to get Nathan up and moving!

That is all for this afternoon! Hope everyone is doing well and THANK YOU EVERYONE for all the prayers and words of encouragement!

Update with Pics!

We are on the floor now. Nathan is playing with toys and talking:-) Even got his first wagon ride. He is doing great! Here are some pictures!!

We have a room!

Just got a room :-) Not much to report. Nathan is resting and watching cartoons. Jason will go home tonight and bring Joshua here tomorrow to SEE HIS BROTHER! Cant wait for that:-) I think that will do Nathan a lot of good.

In about an hour we will attempt walking!

Thank you everyone for all the sweet words of encouragement. Jason and I really do need them. We are very upbeat about Nathan's recovery. He is doing so well. Even with the small roadbumps, we know he will pull through. We are thinking we will be here until the end of next week.

Well Nathan just told us he wants to walk.....more updates soon!

Laura

Spoke too soon

Well darn, I spoke too soon about the temp pace maker coming out. It seems he is back in junctional but handling it well (meaning his blood pressure and heart rate are ok) but they still need to monitor him. So the pace maker is only going to be used as a backup but they want it to stay in.

The chest tubes will come out though! This may also help his oxygen levels. Right now he is hanging around 82 and he really needs to be in the 90's. This will also make him more comfortable and be able to......walk! Wish me luck in convincing him to do that!

His blood pressure is really high right now. They are going to increase one of his medications to see if that does the trick. Also he could be in a little pain making it go up so he got some medicine for that a few minutes ago and then he ate pancakes:-)

He is still going to a room though so we are leaving ICU!!! Kinda looking forward to that. As much as I like the nurses and the one on one here I think it will be nice for Nathan to have a playroom and be able to start opening all those great toys people have sent his way!!!
More to come today I am sure! Plus Ill have a shower....and that will make everyone happier!

Update more soon!

Day 3 Update

So sorry I havent updated sooner. A day in ICU is filled with something to do every minute! These nurses are amazing!!

Nathan is doing wonderful. As his doctor says "He is doing perfect!" :-) He knows I like that word and he makes sure to use it a lot for me. The first day was tough. I will not lie, I was not really prepared to see Nathan that way. I would get dizzy just looking at him with all the wires and tubes. But after a few seconds of seeing him that way I could look past all the "stuff" Slowly Nathan is getting some of the wires and tubes out and he is beginning to look like himself.

The big news is Nathan is in sinus rhythm! He is out of junctional!! This was the reason for the temp pacer. They were about to turn it off but we still have it ready just in case. Hopefully we are in the clear with that!!

He also got his LA line out! Big accomplishment!!

He is waking up more and starting to talk and eat alittle.

I will post pics in a minute but right now he is about to get his neck line out!!! whoo hoo!!

post more in a bit.....

Overnight update

Good Morning Everyone

Nathan had an eventful night! Im happy to say the breathing tube is OUT! He did really well and even coughed when they asked him to. Jason took the first half of the night and I got about 3 hours sleep. I feel much better!! But could really use some coffee now:-) Hopefully mom will be here early. Jason is upstairs now sleeping. He worked hard all night and I am SO glad he was here to help.

Nathan kept waking up and trying to climb out of the crib they put him in. Well I told them that he has never slept in a crib and I think that is scaring him. So he got a big boy bed and he is resting MUCH better! He isnt draining much from his chest tubes so there is talk that they might come out late today! Still has the temp pace maker on. Hopefully we can see where we are today with that.

Nathan is not in much pain. The nurses here are keeping him very comfy. I am so happy we are at this hospital! I really love these nurses!!!!

Here are a few pics. You can see the progression Nathan has made just overnight. :-) Not sure if the pictures are in order but the one of him with all the tubes were taken as soon as he got to the ICU....the other two are from 10 mins ago.

Ill update again soon!!

Laura

Eventful Afternoon

Well Nathan has had an eventful afternoon in ICU. Scared his mom and dad to death but Im glad to report everything is stable now.

When he got here it seemed that his breathing tube was alittle too high and it needed to be pushed down a bit. Unfortunatly while trying to do this the breathing tube came completely out and he coded. About 15 people came running down the hall. They had to replace the breathing tube but they were having some issues placing it. To make a long story short the nursing staff did an amazing job and he is now stable. I am amazed at watching these nurses.

For now they are keeping him asleep. Im hoping to rest now but as I type this Nathan has decided to open his eyes:-) Hopefully we can get him to rest a bit more......

Met with the Surgeon

Just met with the Surgeon. Nathan did require a temporary pace maker. Not sure the specifics on this but will hopefully talk with his cardiologist soon. He also required two blood transfusions. Which is normal for this surgery.

Hopefully we will be able to see him soon.

He is off bypass!

Okay he is off bypass. They got his heart beating again with no issues:-) SO RELIEVED!!!!!! Whooo hooooo!

Right now they are closing him up and we should meet with the surgeon in about 45mins.

Update

Still on the heart and lung machine. Surgeon said it is taking alittle longer that expected but he will hopefully be off in the next 45mins.

We are getting anxious here in the waiting room. Very hard to sit here knowing Nathan is on the machine. So I took a walk and Jason is keeping himself busy reading....he is reading a girlie magazine (please feel free to make fun of him)

Update.

Just got word that Nathan is now on the heart and lung machine. Everything is going well. Should have an update in another hour and a half.

In the meantime we are playing cards in the waiting room. So far mom has won once and I have won once....but Jason has cheated twice. I will give you updates on that as well. :-)

10:30am

Just got word that they have made incision. Everything is going well!

Surgery Day

Nathan is in the Operating Room. He did really well this morning. I had the feeling again. The feeling to just take Nathan out the first exit door and run. But of course I didnt. I know he is in good hands at the Boston Childrens Hospital. Every single person we meet here is amazing.

Jason, my mom and I are in the waiting room.....waiting.....should have updates soon!

Here is a picture of Nathan after receiving his pre-med. He of course was funny while it kicked in:-)

Night Before Surgery

Today was pre-op day. We met with the surgeon and a few other doctors. All very informative but I will spare you all the details. :-)

Nathan is doing great. The great thing is he is only 2 1/2 years old and for the most part has no clue what will happen tomorrow. He is just having fun seeing all the sites! We went to the Harvard Medical School yard after meeting with all the doctors. As you can see here he is running up to his future college....as I like to think:-)

The good news is we got first case tomorrow!!! Whooo HOOOOOOOO!!!! Meaning we will be at the hospital at 7am and surgery should start at 8am. The surgery itself will be approx 6 hours but could actually be closer to 8 hours. A nurse will update us about every hour. So I will update everyone about every hour too. So please check the blog to get updates. When Nathan is out of surgery he will go straight to ICU. I will be updating with photos, and I know some of the photos will be hard to look at but it is part of our journey and I know everyone wants to see his progress as the days go on. We wish we could have our family and friends closer so they could visit him but I think this is a great way to share what we are going through.

Nathan is asleep for the night now. He was very tired. I am too, but I doubt sleep will come easy tonight. Thank you everyone for all the prayers and kind words. We are so blessed to have such a wonderful life. Please think of Nathan tomorrow and all the other heart families out there that will be going through this process.

More tomorrow!

Laura

This Week

This week we are preparing for Nathan's Fontan surgery. Packing, organizing...etc....I knew that this week would be hard. My stomach hurts, I cant sleep and all I think about is what will happen. Im keeping the boys in this week because the last thing we want is for Nathan to get a cold and the surgery be postponed. I have prepared myself mentally and I am PRAYING that he stays healthy! Still not sure how long he will be in the hospital. I know a lot of you have asked. It all depends on Nathan! I am looking forward to being "Post - Fontan". I know he will always have heart issues but having this surgery behind us will be nice. Maybe we can start looking forward to normal stuff after this:-) After this surgery he shouldnt need another major surgery for a few years....like maybe not till high school. Again, lots can change but that is what we are hoping for.

My mom knew I would be a basket case so she is coming in on Saturday! I cant wait!!! She can help me take my mind off of it....or at least make fun of me and try to get me to focus on other things. :-) Im looking forward to taking her to a few places before all this starts.

Nathan has a bit of a cough from the breathing tube during his cath. His throat is irritated. Other than that he is doing great! He gets to start having baths again tonight. He will enjoy that! He misses them. Since his cath he has been pointing out all his booboos. And all his stuffed animals booboos and my booboos.....it is very cute:-) So we have been going around kissing a lot of booboos:-)

I tear up watching him play. I wish he didnt have to have this done. But then I think about what our lives would be like if he hadnt brought us into this "heart life". I have to say that I really do love my life and a huge part of why I love it is what my kids have given me. I read this poem when I am feeling overwhelmed. I have posted it before but want to share it again! It really explains what it is like to have a child that has health issues. At first you are terrified, but once things settle and the shock wears off you do realize how blessed you are to be the one to take care of a child like Nathan.

*************************************************************************


When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, 'Welcome to Holland.

'Holland?!?' you say. 'What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills... .and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say 'Yes, that's where I was supposed to go. That's what I had planned.

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Pictures of Nathan's Cath Day!

Update!!

Nathan is doing great! He woke up a bit cranky but after a few minutes he was fine. He fell back asleep for a couple of hours and spent the whole day watching cartoons. He started drinking and finally eating. He was a little grumpy because he REALLY wanted to get out of the room but the rule is he had to lay flat for 6 hours. They ended up having to coil one vein. So when they have to do interventions like that you have to spend the night. So we got all settled in. Nathan finally got to walk around the halls and that made him happier. We passed the doctor and he took one look at Nathan and said....."Do you want to go home?" Heck yea! whooo hoo. So we went for the x-ray and all is fine. Since it was just one small coil the doctor said he was good to go. Jason and Joshua picked us up and we are now home! So good to be home. I know he will get more rest here.

As for the results of the cath. The doctor said he is a PERFECT candidate for the Fontan. His numbers are GREAT! He should handle the new circulation wonderfully.:-) The issue that we were concerned about isnt there anymore. So this will be just a basic Fontan. Great news!!!

I hope to get some pictures posted tomorrow. So check back when you can!

Laura

Nathan is having his Cath now!

This morning Nathan and I woke up at 5am.....guess the early bedtime kinda backfired on me:-) But he drank his last cup of apple juice around that time and watched cartoons. Then he asked to eat....from there the morning got hard! I had to tell him he couldnt eat:-( Nathan didnt like this one bit!! But we made it to the hospital at 8:30am. However the doctors were running late. I think the hardest thing to do is keep a 2 year old happy when they are hungry!

At 10am he received his pre-meds:-) I think this is the only time a mother thinks it is cute to see their child high:-) He was in good spirits after that! He got to watch part of Toy Story. When it was time for him to be carried to the OR he was alittle upset that he didnt get to see the ending. But once he got to see the inside of the OR his first words were "OOOOOO AHHHHHH" something like that:-) I have pictures but they are not uploading so I will have to do that once we get home and I will make sure to post it. I layed him on the OR table and he immediately grabbed the doctor and started to point to his pillow. There was something on that pillow that he NEEDED to discuss with that doctor! It was funny:-) I took that as the ok to leave and I noticed that the other doctor was getting his mask ready to put him to sleep.

I am waiting for updates. I had to grab something to eat because when your child has to fast for surgery so does the mother. I am figuring that out. Even sneaking foods to the bathroom in hopes that he wouldnt find me didnt work. Plus I felt guilty!

I will update again soon.

Laura

Pre-Op Day

Nathan and I got to the hospital at 7am this morning. He was full of energy!! The day was full of pre-op testing. Nathan as usual did amazing! I actually was worried that he wouldnt do well for the blood draw so I waited till Jason could get there to help me "hold" him down. Well the boy never really cried! I was so proud:-) Then I thought for sure he would need cuddles from his mommy......nope a sticker and daddy bouncing him around was all he needed. I secretly was crushed. But Im sure by the end of this he may ask for me to cuddle with him. He is growing up though. I met a mom that had a 5 month old that was getting ready to have his first heart surgery. Nathan of course loved seeing a baby and wanted to give him toys. It was very sweet. Kind of a strange feeling that he is getting older and meeting all the babies that will go through what he has already been through.

We ended the day with meeting with Dr. Breitbart. He mentioned that this cath will also tell us if Nathan will just need the straightforward Fontan or the Fontan....plus a bit more:-) This is concerning the obstruction that I have spoken about before. If he does need "a bit more" than the Fontan it could result in a pacemaker. Which we do want to avoid. But, like I have said before, it is what it is. Just another piece to learn more about.

We were out of the hospital by 2pm. Came back to the hotel and "tried" to nap but Nathan wanted nothing of it. So by 6:45pm he was sound asleep for the night and is snoring as I type. Tomorrow we are scheduled for the cath at 8:30am. I will update midmorning!!!

Also- It seems everytime Joshua is in the exam room he always has one question for the doctor, This time it was "What color is a heart" Soooo cute:-) The doctor told him red and Joshua said ok. I think it made him feel like he was apart of the discussion:-)

Thank you everyone for all your thoughts and prayers!!

Love
Laura

Nathan's Surgeon

Dr John Mayer will be Nathan's surgeon for his Fontan!

http://children.photobooks.com/directory/profile.asp?dbase=main&setsize=5&last=mayer&pict_id=9900960

This is the week of Nathan's Heart Cath

Well, it is beginning. Today I am going to try and get things ready for Nathan's heart cath. Jason and I decided that Nathan and I will spend the night in a hotel near the hospital on Tuesday and Wednesday night. We live about 45mins from the hospital but with rush hour it can take about an hour and a half to get there. Love Boston traffic! We just dont want to have to wake both of the boys at 5:30am both mornings to make it to the hospital by 7am. So the plan is for me and Nathan to spend Tuesday night in the hotel and on Wednesday he has a FULL day of pre-op. Then on Thursday is his heart cath. This is to make sure he is ready for his heart surgery on the 28th. They will check all his pressures to make sure he can tolerate then Fontan circulation. He will be in the hospital till Friday.

Jason will take Joshua to gymnastics on Thursday morning. This way he wont miss a class:-) He loves gymnastics.

I will update a few times this week! Especially on Thursday during the cath. Hopefully I will get to have a tour of the hospital while he is having his cath so I see how our life will be during his surgery.

Hope everyone is doing well!!!

Laura

Thank you!

I just wanted to thank everyone who is sending gifts to Nathan for his hospital stay!! We have received a lot! It looks like Christmas in Jason's office. I know Nathan will enjoy them while he recovers. I will make sure to take pictures when he receives them.

Next week he will go in for his heart cath on July 15th. We still havent told Joshua or Nathan. I am trying to find the right time and well.....the right words. I am going to wait till Monday to tell them. That way there wont be a lot of time that passes until everything starts. Joshua is very smart and I worry about how he will feel during all this and if it will scare him. For Nathan, I still think he is young and things wont click for him until he is in the hospital. Also, Nathan has amazed me at how brave he is so Im sure he will take this as best as possible.

I will keep everyone updated on this website! So check back soon!

Love
Laura

Next Surgery is Scheduled!

Hello Everyone

Well as most of you know, Nathan's next heart surgery is scheduled for July 28th. He will have a cath done on July 15th which he will stay in the hospital for one night. Then the big surgery will be July 28th. I will use this website like I did last time to update everyone on his progress.

Thank you everyone for being here for us during this time. The move to Boston has gone extremely well! The boys love it here, as do Jason and I. Didnt realize we were going to have his surgery so soon after moving, but everything has fallen into place so far Im sure this will be for the best.

Hope everyone is doing well!

Laura