Happy New Year!!!!

 

As 2013 approaches us rather quickly I might add, I would like to take a few moments to recap what has been going on and what to look forward to in the New Year!

 

 

It is hard to believe that this past year Tristan "graduated" from Pre-K, spent the summer at Splash Down Water Park being a fish and then started Kindergarten.  I can honestly say that when he was 4 days old and we were sitting in the consultation room at Children's talking with Dr. Cross, that I never thought we would get this far.  Low an behold Tristan had his own idea of what he was going to do and accomplish.  Now he is a very intelligent Kindergartner who is in the advanced Kindergarten class.  He is having a little trouble with his hands as I mentioned in the last post but we are working to get help with that.  Tristan had 5 cavities filled without Novocaine because he cannot currently have it because it lowers his already low heart rate.  Other than that he has had an amazing year making new friends at school and growing like a weed!

 

In 2013 we are anticipating a fantastic year for all of us.  Tristan will be starting hockey lessons next week.  I will be sure to let everyone know how that is going.  He was swimming over the winter but after going ice skating for the first time yesterday he has decided he is going to give hockey a try.  I think his cousin Ira has something to do with this but that is OK with me.  We are also waiting on the reports from his last holter monitor and blood work that was done at the last Cardiology visit.  Tristan seems to be holding fluid again but it isn't too bad.  Some of the kids with the Fontan tend to do that for a while but it is just taking Tristan a really long time to get used to.  OK so maybe almost 4.5 years but who is counting :)

 

In 2013 we will also being going on our First Family Cruise.  We are very much looking forward to this vacation.  We are going to celebrate the marriage of our very good friends Todd and Leslie.  I am very excited and nervous at the same time because there is so much I need to get ready to take with me for Tristan.  I need to make sure I have their birth certificates, Tristan's most recent EKG and last Cath pictures.  I also need to bring the finger pulse ox I just recently purchased.  I will also have a letter from his pediatrician and possibly his cardiologist for that 'just in case" envelope.  I need to call the cruise line and make sure they are able to accommodate a pediatric patient and if not then I will make sure we have what he may need, ie: blood pressure cuff, finger pulse ox lead, pediatric leads, and possible pediatric needle for ivs.  I was told that they will make sure they have those on board for him as long as I speak directly with someone in their health department.  All fun things I have to look forward too in the next month.  I wouldn't change one minute of it!!!

 

I really hope that everyone enjoys their New Year!  I will do my very best to update this with new and excited information as much as possible. 

 

Happy New Year!  May your New Year be filled with all the joys you could imagine!!!

 

 

'Tis the Season!

'Tis the Season for us to be thankful for what we have and to honor those lives lost.  I am very deeply saddened by the events that took place on Friday.  I wish for all those parents the strength to get through this very rough road ahead.  I wish for them to find strength in friends, family and even strangers who become new friends.  I do believe that we need to come together as parents and watch out for our children as well as other children and be aware of our surroundings and the situations we are faced with everyday.  Tristan has taught us to remember that life is precious and to not take things for granted. 

We have a meeting on Wednesday with the intervention team at Tristan's school to get him scheduled for another meeting for either 504 or an IEP.  Tristan has been apart of a study at Children's for The effects of lack of oxygen on brain development in single ventricle children.  Wow that is a mouth full.  So after a day long evaluation it has been determined that though Tristan is very advanced for his years he also has some other things he needs help with.  It has been determined that his fingers have caught up with him.  Those fingers that I love so much do not want to function the way they should.  After having three surgeries on them to finally separate them he has some dexterity issues that need help.  He has a little trouble with writing in the designated area, needs more help with gripping the pencil and a few other every day things.  Also he has difficulty with Functional Recall. An example is that if you show him pictures of something then want him to tell you what he saw after taking the pictures away he can not recall what he saw.  It is not that he isn't looking at them or didn't see them, he just can not recall them from his memory.   Another way that is shown is even in group discussion where he is talking about something and then just looks at you with a blank stare.  He has forgotten what he was talking about and needs help redirecting and remembering.  Is it ADD or ADHD you are probably thinking and the answer is no.  His brain did not have enough oxygen during development in utero as well as until he was 18 month old.   So basically he will need OT services for writing and extra time for tests and writing assignments.  I know what a lot of you are thinking, not Tristan.  He is very advanced but will also need help.  The hardest part about all this is the fact that he is advanced.  He is not cognitively at the kindergarten level.  He has been tested and is more cognitively a first grader and a second grader in some areas.  This poses a big problem because with the testing the county has to do, he will most likely pass with flying colors.  He may not be given an IEP until he starts to fail in the classroom which I think he totally wrong.  He should be tested at the level he is at.  The good thing is that we have his teacher on our side because she sees the struggle that he goes through now.  The Executive Recall also effects him when he is doing an assignment.  His teacher talked to me one day after school and she had originally thought that Tristan was just being very thorough with his work, but come to find out he gets part way through it and can not remember what he is suppose to be doing.  So we think that he will at least get the 504 with services for his hands and extra time with assignments and tests at school because of the lack of dexterity.  Our hope is that will also help him be able to recall the things he is suppose to for those same assignments. All this came about because I was noticing he was very frustrated when he would come home from school and we couldn't figure out what it was.  After seeing Dr. Sanz at Children's and getting the report back we are able to start the process to get him the help he is going to need.  We are also going to be doing some behavioral therapy soon and he will be going to play therapy.  The events of his short little life are affecting him in ways that no one ever thought.  I get so angery when I hear people saying that these kids won't remember any of this.  Tristan is remembering some thing that at first I thought were from seeing pictures or hearing us talk about them but then some of the things he says about the operating room are things that we have not seen or even been there for.  Our hope is that with all these services coming together we can help make school a lot more fun for him and help him better understand what is actually going on with him.  He gets so frustrated when doing things it just breaks my heart.  For all our Single Ventricle friends I don't mean to scare you but this is what we all have to look forward too.  From the medication causing cavities to needed services in school, there isn't anything we wouldn't do for the lives of our children!  I wouldn't trade it for the world.  I love both my boys so much and will go as far as I need to with the school system to get the proper help that Tristan needs and if Drayk does too when he gets there I will fight for him too.  Their lives are very precious to me and I wouldn't trade my life with them for the world. 

I hope everyone has a Merry Christmas and a Happy New Year.  I will be sure to update once we know exactly what is going on.

The Fontan

The Fontan!

I know it has been awhile since I have posted anything and our next major surgery was The Fontan.  I decided to add this one today because a very special friend is having his Fontan done today as I type.  I remember that day like it was yesterday but in fact we are almost exactly 4 years from that very day.  Tristan had his Fontan at 18 months old.  We found out during the summer before that he was going to have his Cath to place a stint into his Left Pulmonary Artery and to take a look at things for his last open heart surgery.  All went well with that.  We got the call saying his surgery would be Oct. 6, 2008.  I was scared and relieved all at the same time.  We knew it was time because he was doing so well and hitting all his mile stones.  We checked into the Corporate Apartment the day before surgery with my Mom in tow.  The night before his surgery was filled with restlessness and worry.  He had already had a hand surgery in between his last open heart surgery so he was OK with being at the hospital.  I was just not mentally prepared to see him with all the tubes and wires again.  We were the 2nd case or so we thought.  We get there about 10am.  All is well then we hear we have been pushed back because of an emergency...OK no problem.  So we waited and waited.  All the while trying to keep an 18 month old contained in the Pre-Op area with nothing to eat or drink since the night before.  They were kind enough to give him an ounce of apple juice to hold him over.  That only seems to make him worse.  Then finally around 1pm we got word that he would be going back within the hour.  In comes everyone for one last final check and to give him some fantastic medicine.  Versed is the best loopy medicine for Tristan.  He was trying to run around and continue to play with the trucks and read but he couldn't walk in a straight line.  No sobriety tests for him while driving his little tonka dump truck.  They finally came to get him and the emotions ran wild with me.  I had to hold back my tears because I wanted to be strong for him.  I still can see his face when he went into the operating room with a big cheesy smile and waving.   He let the Anesthesiologist carry him back there with no problem.  He waved and blew kisses and as she closed the door it was like the flood gate had been opened.  I pulled myself together fairly quickly because of the strength of my husband and our family that was there with us. 

After about 3 hours we got the call he was out of surgery so we all headed that way to go wait to talk to the Dr.  I remember Dr. Jonas coming in to the room without much emotion and my heart sank.  I had no idea what to expect but I wasn't expecting good news.  Then he said everything went beautifully and he was on his way upstairs.  More tears, but this time they were happy tears.  We found out that the placement of the Fontan was a little complicated as most because it goes through his heart to connect the Inferior Vena Cava to the Pulmonary Artery where he wanted it to be.  There wasn't really any more risk with doing it that way but the risk of infection rose just a little bit.  So we all waited about 45 minutes before we were able to file 2 by 2 into see him in the CICU.  He looked amazing when we first laid eyes on him.  He still had the breathing tube in but all was great.  Since Tristan's surgery was so much later in the day it was almost time for shift change by the time we took turns eating and visiting.  Scott and I decided we were also going to take shifts staying with Tristan.  So if I remember correctly I got the first night.  It was fairly quiet because they weren't really going to do much since he wasn't long out of surgery.  The following day however is when things started happening.  Tubes and lines were already starting to come out.  We were a little surprised because we were told that this surgery is usually 7 days in the CICU and about that many on the floor or more.  So on day one post-op when stuff started happening we were a little excited.  He was eating again on day two post op and I had to laugh when I walked into his room and he had a sausage in his hand because he was starving.  Once he started eating he didn't stop for what seemed like 2 whole days.  They decided to take his cath out on Saturday which was only the 2nd day after surgery, and this little guy knows what pain is.  He peed once and then wouldn't do it again because it hurt.  Poor little man was having trouble with his pressures and his oxygen saturation because he wouldn't pee because it hurt.  We finally got the doctor to give lasix to help him go but the nurse wanted to cath him again.  We tried to fight it as long as we could and then they wouldn't give him the lasix so they had to cath him.  Well that was not fun.  They basically did it then gave him the lasix....duh anyone would pee as soon as a diuretic was given.  So later that day they took it out again and this time I told them they were not putting it back in.  They did keep the lasix on board so we didn't have any trouble peeing after that.  Day 4 were were moved to floor because little hot shot was doing so well.  Tristan amazes me all the time, then and now.  We ended up in the hospital for a total of 9 days.  Tristan did so well they kicked us out early.  To our surprise he was ready to go home. 

The Fontan procedure is today the last staged operation for all children born with congenital heart disease who cannot be offered a 2-ventricle repair. Originally designed by Fontan for treatment of tricuspid atresia, the procedure has undergone 2 major successive technical modifications.^1–3 In its first version, the atriopulmonary connection (AP), the right atrial chamber was isolated by the closure of the atrial septal defect and the hypoplastic tricuspid valve. The right atrial appendage was then anastomosed to the right pulmonary artery.³ It was later understood that better streaming of the blood flow in the systemic venous pathway to the lungs improved the patients hemodynamics and might avoid complications related to progressive atrial dilatation. The operation was therefore modified to the lateral tunnel technique (LT), whereby the right atrium was baffled with an intraatrial patch and the superior vena cava was sutured directly to the right pulmonary artery.¹ Performing the anastomosis between the superior vena cava and the right pulmonary artery (bidirectional Glenn) at an earlier age as an intermediate step decreased total mortality and morbidity to achieve a final Fontan circulation.⁴ The most recent modification of the technique consisted in the replacement of the intra-atrial routing of the venous blood by the insertion of an extra-cardiac conduit (EC) between the inferior vena cava and the right pulmonary artery (Figure 1).²

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Figure 1. Fontan surgical techniques: Classical atriopulmonary connection (A), Lateral tunnel (B), and extracardiac conduit (C).

An increasing number of “Fontan patients” are now entering adulthood, and these patients are facing an uncertain future. It is clear from the 20 years follow-up of the operations performed in the initial era that this operation remains palliative. Patients are prone to developing arrhythmias, heart failure, and progressive rise of their pulmonary vascular resistances.^5–9 Conversion of the atriopulmonary connection or the lateral tunnel technique to the extracardiac technique has been successful in treating failing Fontan patients, but the indication of this new procedure are still under investigation.^10,11 Because it is still unclear whether the technical modifications brought to the initial Fontan operation translated into long-term clinical benefits, we decided to review our clinical experience with these three techniques.

Once we got home things were great for a whole day!  Then the following day I started weening him off his Tylenol and Motrin and things started going down hill really fast.  He was very lethargic and tired and started running a fever.  At first we were in the in the 99's, then slowly it crept up to finally topping out at 103.9.  We were already packed and I called the Cardiologist on call and by the time we got to the hospital the ER was waiting for us and we went back then up to a room.  We spent another week in this hospital.  I had never been so happy to finally hear that it was a UTI from being Cathed a second time.  While there we found out that Tristan's Spleen was in multiple pieces which is known as Polyspleenia.  So now he gets put on another medication that will follow him for quite some time...Amoxicillin everyday.  Hear we are almost 4 years later and still on Amoxicillin once a day.  Because of the Polyspleenia he is immune deficient.  Seriously at this point I was like whatever, keep throwing stuff at us, we can handle it, and handle it he has. 

Tristan is now in Kindergarten, has all 10 separated and almost fully functional fingers and is doing fantastic.  Last summer he has his Fenestration closed that was left open during the Fontan.  His oxygen saturation's are between 92-99.  He is about to go into the gifted program at his school and tested out of Kindergarten for reading and math.  I couldn't be more proud of all he has been through and all the obstacles he has over come.  He is one smart little boy with a heart of gold!  He truly touches the hearts of all he meets.  Do not get me wrong his is still a little boy who likes to torment his little brother who fights back pretty well. He played T-ball last spring, swam over the winter and we spent almost all summer at the water park.  I will try to update this about once a week now but no promises.  Drayk is in school twice a week so I should at least have one day a week to let all know what is going one. 


Please send lots of good thoughts and prayers to our heart buddy Caelen who is having his Fontan right now!!!  Good Luck Caelen...Katy and Martin we are thinging about you guys!

Oct 6, 2008

Sept16, 2012

Renn Faire with the whole family.  Tristan is 5 and a half now!