Check-Up

Conner returned to Children's Hospital today for his first check-up since being discharged.  His cardiologist called a few times to check in, but today was the first time to see her.  He had a chest x-ray, EKG, and then  we met with her, and she removed his stitches (or, "spiders" as Allie called them).  Conner is amazing!  His blood pressures look great!  His oxygen saturation looks great! His incision is healing nicely!  His x-ray showed that most of the fluid is now gone, which is great - but she did explain that the lower portion of his left lung and diaphragm appear to have suffered one of the complications we were told about.  The nerve to the diaphragm is very close to the aorta, and damage to the nerve can cause the diaphragm to not function properly.  If it is severe enough, surgery can be done to help resolve the problem, but as of right now, Conner seems fine and we will just monitor it.  The three scenarios we discussed were, first - that the nerve will heal itself over time and restore full lung/diaphragm function, OR second - Conner will be fine and never notice the slightly diminished lung capacity, which is where he is right now, OR third - Conner could develop shortness of breath during physical activity, and need surgery to fix the problem.  Given the many unknowns and risks of the major surgery Conner had, and the fact that as of right now Conner is breathing fine, and recovering amazingly fast, we are very grateful.

We're Home!!

We are home!

A whole week earlier than expected.

Which brings both excitement and anxiety...

We are so excited to be home, because as several doctors and friends have told us, the healing process happens a lot faster at home than in a hospital.  It was so great to eat dinner as a family, and put the kids to bed.  Although Conner still has a long road ahead of him, I am AMAZED at the progress he has made in such a short time.  When putting his pj's on tonight, he wanted to show Allie and Cayden his incision - so he did.  They both looked very concerned, and I know they are very proud of their brother, as we all are.

We are also a little anxious to have the responsibilities that have been done for the last week by very skilled and caring nurses and doctors.  Will we remember his medication?  Will we hear him at night if he needs help to get up?  Will we be able to keep Allie and Cayden from being too rough with him?  I know we will be okay, and I am SOO happy to be home, but I cannot deny that I am also a little anxious about this next step.

Conner was so excited, and wanted to pack his things from the moment he woke up this morning.  When we finally began to pack after his morning tests (which he was so brave for!) he sat and looked at the giant bunch of balloons tied to his bed.  He then asked, "Mom, do you think I should give my balloons to some of my friends who have to stay at the hospital?"  I almost cried!  This kid is such a wonderful example to us.  I told him how proud we are of him, and then suggested that he pick his favorites, and give the rest away.  He was so excited to give balloons to friends he met while there, and said, "I hope you get better so you can go home too."

Here we are leaving the hospital. 

No News is Good News

Sorry for not posting anything on Sunday.  It was a great day!  Conner had lots of visitors which brought LOTS of smiles, treats, toys, and even more questions about what has been going on outside his hospital room.  He took several walks, had another x-ray, and even had a sponge bath to try and remove the adhesive all over his arms & legs.  It was hinted that Conner may be able to go home in the next few days.  We had been told to expect about 2 weeks in the hospital, and we are just at one week tomorrow.  Crazy!  Kids are amazing.

This morning Conner had another x-ray, and while there is still a little fluid build up around the lungs, they are not too worried, and say that this could take a few weeks to get back to normal - and will do so once Conner is more active, taking bigger breaths, and coughing better.  He also had an echocardiogram.  Conner is one tough kid!  An echo is an ultrasound of the heart, which means that the tech is moving the ultrasound wand all over his chest right over his incision...and he sat very still and just let her do the exam.  I was amazed at Conner.  I am pretty sure that I would not have been such a good patient under the circumstances.  (I am sure it helped that Curious George was on TV....but still.)  The Echo showed great heart function, and most importantly great blood flow to his lower body.  Conner now has very strong pulses in his feet, which was not the case prior to surgery.

We have one more test to do on Tuesday morning, and then they may start the discharge process.  The test tomorrow morning is a study on his kidneys, which isn't something that will keep us here, but could mean more down the road.  We will keep you posted.

Conner spent the afternoon in the playroom, taking walks, watching cartoons, and getting to know some of his neighbors.  One of his neighbors is celebrating a birthday today and sharing cupcakes with everyone!

Two Less Tubes

The biggest tubes are now gone!  Conner just had his two chest drain tubes removed.  They just gave little versed (so he would relax and lay on the table, and hopefully not remember the experience) and morphine (for the pain) and yanked.  Really.  His surgeon came in during the procedure, and kept instructing the nurse practitioners to pull it out FAST.  I have since been told that the speed is needed to keep air from getting in- very important!  Keir and I were in the room, and also got to see his incision for the first time.  Wow.  What an amazing brave kid!  And, what amazing doctors we have.  I cannot believe the things surgeons are able to do.  Not to mention how FAST Conner is recovering.  Simply Amazing!

Conner is now resting in bed, and we expect him to take a good nap given the extra meds and stress of the procedure.

Move'n

Conner has been doing so awesome today...even with his shallow breathing...that the doctors said that he is clear to move out of the Cardiac ICU and over to the Cardiac Floor--a whole 1 to 2 days earlier than expected!! The Cardiac Floor has a playroom and a huge fridge full of popsicles! We're sad to be leaving a group of great nurses. But so proud of Conner for all of the hard work he is putting forth to get better! If all goes as planned, Conner will be eating lunch in his new room!

Oh and Conner is very excited about two very important visitors that are on their way over to see him...Cayden and Allie!

Breath Deeply

As warned with this type of incision, getting Conner to take deep breaths is proving to be difficult, and he is not keeping his oxygen levels up enough, so we just had to add one more tube back.  Conner is wearing a nasal cannula for supplemental oxygen.  We were also told this morning that his chest x-ray does not look as good as yesterday - another result of the rapid shallow breathing.  Ours goals for the day are to cough a lot and breath deeply to get those lungs fully expanded again.  Hopefully we can get him to walk a few more times today, because that forces him to use his lungs more, and the moving around sometimes initiates  coughing.  Conner will switch pain meds sometime today, which will hopefully help him with his deep breathing.  He has been such a champ, and always says he is okay, or not in pain, but by his facial expressions, and reluctance to move, raise his arms, or cough, we can tell he is in more pain than he says.  He is a superstar and given the huge steps forward he took yesterday, this one step back is very very small and not a big surprise.  We love you Conner!!!!

Breakfast

This morning Kristen, our nurse, handed me a Hospital Room Service Menu and said, "Conner can order whatever he wants on this menu for breakfast." I read the menu to Conner and he chose a normal breakfast--for him--pancakes, scrambled eggs, an orange, and apple juice. It turns out that Conner's eyes were a little bigger than his stomach for a first meal. He ate mostly eggs until he said that he was full...which was like 7 bites. His body did a great job at keeping it all down too! (Okay...that may have been too much information, but it's super important!)

LESS Tubes, A NEW Seat and a LAP

Conner acted like nothing less than a ROCK STAR today!!

As Lindsay's earlier post mentioned, Conner's breathing tube was removed today. This allowed him to begin breathing on his own and slowly start taking fluids orally. When I got back to the hospital I could not have been more pleased with how great Conner looked. His color looked perfect, he was happy, made a few silly comments, and even asked when he could go home! He even had a couple of visitors, that he was very very happy to see!

Lindsay took a much needed break and went out to dinner. While she was gone the nurses decided that we were going to surprise Mom when she got back. At about 8:30 the nurses began removing two IVs, the catheter, and the mainline in his femoral artery, and one blood pressure cuff. It was a tough task because there was A LOT of tape--Conner doesn't like taking off even the smallest of band-aids, let alone feet and feet of surgical tape! He got cleaned up a little and then put on a fresh pair of pj's. Then the nurses helped Conner sit up and move into a cozy chair. Where he rested sitting up, watching random TV shows. Mom walked in just as Conner was bitting into his second popsicle. She was SHOCKED to see her big boy looking even better than before she had left.

Why stop there right? Conner was resting very comfortably in his new chair when Kristen came in and asked him if he'd like to go on a walk with her. He said sure! So she began to completely disconnect him from the remaining wires and said, "Dad you hold that hand and don't let go." Kristen told Conner that, "our first stop is the Toy Box and you can pick whatever you want!" He found a yellow truck. Next stop, the bookshelf where he got to pick a few books for a bedtime story. Down the hall and out the doors to the balloon station at the front desk...Conner picked a Happy New Year balloon! Down the next hall and around the corner we found the kitchen. Conner asked for an apple juice and graham crackers. From the kitchen it was down the hall for the home stretch to his room. The whole trip was probably less than 450 feet, but an amazing accomplishment for a kid that is less than 29 hours post-op. Once back in his bed he ate a cracker, drank all of the juice, and we read three books.

It is now 12:47 am and I'm blogging at his bedside. He is sound asleep with Froggy the Pillow Pet under his left arm, Alvin and his newest addition Moose comfortably tucked under his right arm.

Sweet dreams for a sweet and strong boy.

Conner asleep in his new cozy chair...with his crew of course!!

Popsicle!!!!

Conner's nurse let him have a couple bites of popsicle after he said he was hungry. She even tried to see if he could hold it himself, and he tried, but couldn't quite get his hand to move to his mouth, and got frustrated - so she held it for him.  He did great!

No More Tubes!

...well, on his face, anyway.  The rest will come with time, but this was a big step.  It took a bit longer, and we had a couple setbacks but the breathing tube and NG tube are out! In order for the breathing tube to be taken out they had to put in a new NG tube.  His stomach was full of fluid and gas, and it is not safe to extubate under those circumstances.  So, we had to add one more tube - but Conner was a champ.  Then, he became so sleepy that they wouldn't take them out.  He needed to be alert in order to show them that he could start breathing on his own.  Eventually, he was ready.  The NG and breathing tubes were both taken out at about 2:00pm.  He did great, and actually I did great as well!  Keir promised Cayden he would pick him up from school today so I was alone, and not sure how Conner would react.  He did great!  As soon as he calmed down, and got the hang of talking and breathing again, he asked for a cookie!!  (He knows from our many visits to Children's Hospital that he LOVES the cookies at Au Bon Pain downstairs!)  I explained that he needs to start with water, and see how his tummy reacts, but he cannot even have water for four hours.  He is hanging in there and being patient while he watches some cartoons and dozes in and out.

Possible epidural

In order to have Conner wake up fully and breath on his own, they need to wean the current pain meds a little, but even with the current pain meds he is showing sings of pain.  So, they are trying to decide what pain meds to switch to, and one of the options would be to put in an epidural.  I was just told by his nurse after her discussion with the the surgeon fellow who assisted in his surgery that oftentimes in adults with a clamshell, an epidural is needed to control the pain.  We will see . . .

Drink, Please??

Only one parent is allowed to stay the night in the cardiac ICU, so I left Keir with Conner and went to a boarding room across the hospital for a few hours last night.  While I am not sure if I really got any sleep, I did lay down and try to rest for a while.  I was anxious to be back by 5:30, knowing that surgical rounds are usually at 6am.  When I walked in, I was not expecting a change, but Keir quickly told me that Conner has been responsive, and was even asking for water using his sign language, and barely lifting his hand off the bed.  I said good morning to him, and received a smile back. Oh, such a sweet boy!  It is very obvious that the breathing tube bothers him by his facial expressions, but hopefully that will come out today...and then 4-6 hours later he will be able to have an ice chip or two.  We are now waiting for the doctor to come by and give his plan for the day.

The Night Shift

Kristen our night nurse told Lindsay and I that we really needed to get some sleep. So Lindsay headed off to our little family boarding room and I stayed with Conner. I stayed up with him for a couple of hours, and then decided that I'd try to sleep just past midnight. For some ridiculous reason I set my alarm for 5:30--like there was any chance that I was going to get five hours of sleep! Either way I made an attempt to sleep on my window seat style foam mat of a bed. For the first hour I was out of bed for every beep or alarm.

At 3:05 Kristen told me that Conner was waking up. I was at his bedside in no time flat! He turned his head in my direction and I said, "HI Conner, you did such an awesome job today!" He cracked a small smile and waved at me. I then told him he can't talk and that he should go back to sleep.

From that point I couldn't sleep. I'd check on him every 20 minutes or so while he rested. At 5:15 I got up for the morning as they were giving him a chest x-ray. He looked over at me and used his sign language from when he was a baby to ask for a drink of water. When I told him that he had to wait until his breathing tube came out he started to cry, tears ran down his cheeks. I felt so bad for him. I calmed him down and told him that if he rested the tube could come out quicker. He quickly fell back to sleep.

Lindsay arrived at 5:45 showered and not really rested. When she arrived Conner was awake and had a smile for her. The kid is a CHAMP!!

Road to Recovery

Every step of this process has seemed like the hardest, but walking in and seeing Conner hooked up to more lines and tubes than I could count was probably the most overwhelming step so far.  He is still heavily sedated, and will be until tomorrow, but looks comfortable - if you can be comfortable with three main lines, three IV's, breathing tube, catheter, chest drain tubes, etc.

The main thing they are watching right now is the gradient between upper and lower blood pressures, and keeping the pressure down to give the graft a chance to heal a bit before working at capacity.  They will monitor him through the night, and then make a decision around 6am when to start waking him up.  I am actually nervous for this.  Conner has a sensory aversion which makes even a small band-aid a traumatic experience.  So...I am nervous for him to wake up and see the MANY things connected to him.  They assure me he will still have plenty of meds to keep him comfortable and relaxed, but I cannot help but worry.  Especially since every nurse that peeks in to check and see if Conner's nurse needs any assistance says, "oh, he had a clamshell????"  And, of course, they say it in a way that makes me nervous.  A clamshell incision is the largest type of incision used on the chest, commonly used for heart and/or lung transplants. Instead of going vertically along the sternum, it goes across the chest horizontally and curves around his side.  A clamshell incision is more painful, takes longer to heal, and sometimes makes the process of getting them to breath again on their own a longer one - because deep breaths are really hard and painful.  But, they still anticipate the breathing tube will come out sometime tomorrow.  Conner needed this type of incision because the location of the graft was on his left side, and a midline incision would not have given them the access they needed to the side.  We have been told by several people that his progress will be measured by how many tubes they can remove...and while I of course want to start removing them, I am also nervous about the process.

Finished!!!

Conner has a new descending aorta, made of gore tex, 14mm diameter, 5 inches long, and we will be able to see him in about an hour!  The surgeon said Conner did great, and only threw one curve ball - which is when they decided to use bypass, and cut a larger incision to have a better view and working area.  His blood pressure is now identical in his lower and upper body.  He chose to do nothing with the collateral vessel at this point thinking that would have been too much during one procedure, AND because anything he decides to do with the collateral can be done via catheter at a later date.   Overall, everything went fantastic!  Now the waiting to see him....

The Surgeon "Broke Scrub!"

We had never heard this term before, but apparently this means they have closed him and taken off their sterile attire.  We are just waiting for the Dr. to come talk to us.

Off the Pump!

Conner was just taken off the pump and his heart is working on it's own, pumping blood through his new aorta!  They will watch him for about 40 minutes before closing him up...

Warming up

It is now 3:30, and the repair is in the last stages, and they are beginning to warm him up in preparation for weaning him from the bypass machine - which is when they will see if the graft is functioning correctly, with good pressure.

Bypass

Conner's surgical team decided bypass is needed and Conner was put on heart lung bypass about 2:00pm.  We were expecting this from the beginning, so this is not a huge surprise . . .

Waiting . . .

Conner is just over two hours into his surgery (after the extensive prep the surgery actually began at 10:50am), and so far they have not needed to use the heart lung bypass machine.  The collateral vessels have supplied an alternate route for his blood flow for almost seven years, and now these collateral vessels are making it possible to do this complicated graft to connect his aorta without bypass - amazing!  They told us there is still a chance he will need bypass, but as of right now, he does not.  More as we get news . . .

A little loopy

Conner received versed, became quite silly, and then began to doze off.  We gave him kisses, and watched them take him away at 8:30.  I cried, of course.  We have been assured they will update us every step of the way.

Anxious

Poor Conner was so anxious last night that he woke up at 1am, walked into our room, and asked me to check him for a fever.  Apparently he overheard Keir & I discussing the fact that if he came down with whatever Allie had, his surgery would have to be postponed.  He did not have a fever.  He was fine - except that he was SO INCREDIBLY anxious that he could not fall back asleep, and I ended up sitting on the couch watching cartoons with him until 4am. I went to lay in bed thinking he was dozing off, but when I came back at 5:30am, he was still laying there wide awake.  Poor kid!

A Note to All

Dearest Friends and Family,

As many of you know in early October Conner was diagnosed as having a "Type B Interrupted Aortic Arch".  This is an uncommon occurrence where the aorta stops and starts again causing an 'interruption' in the aorta thus cutting off blood flow to the organs and muscles below the heart.  This threatening condition is typically found in newborns and is corrected immediately with open heart surgery.  What makes Conner's case even more rare is that he is 6 years old (turning 7 in just 13 days...most likely while he's still in the hospital) and it was just discovered!  What the doctors have found is that while he was still in the womb his body made the necessary corrections to compensate for the loss of blood in his lower extremities and organs by creating collateral vessels.  While these collateral vessels have been working very hard to keep Conner healthy and going for the past 6 years and possibly many more years to come, there are some very significant risks that are associated with having collateral vessels supply an artery with blood.  Some of them include: aneurysms, strokes, clotting, high blood pressure in the brain, very low blood pressure in the legs, lack of muscle development.  After weeks of consulting doctors and surgeons, praying and focusing on what would be in Conner's best interest, it was decided that surgery to correct the interruption is the right path to take.

Fast forward to today, Tuesday, January 4th.  Today was Conner's pre-op day at Children's Hospital in Boston.  He was a trooper today!  We got to the hospital at 7:45 and after hours of x-rays, blood tests, exams, and what seemed to be endless meetings with doctors and surgeons we finally started our drive home around 4:00.  One notable event today was a blood test that he needed.  Conner is not one to be poked with needles--usually its an all out fight if you even mention the word needle or poke.  Today, Conner sat on my lap, looked the other way and began to tell the nurse about how he got to be an assistant coach for the Wellesley High School Varsity Basketball team the night before.  When he looked at what was going on, the blood draw was done.  He hardly flinched!!  Lindsay and I are so proud of him.  Conner was also very excited to get a tour of the Cardiac ICU and Cardiac Floor where we'll be living for the next two weeks.  He got to see other kids, what a room is like, the play room, and most importantly the two kitchens with ice cream and other treats!

The surgery is Wednesday morning.  We'll arrive at the hospital at 7:00 am and the operation should begin by 10:00.  We have been told to expect that the surgery will take anywhere from 4 to 6 hours to complete.  Following the surgery Conner will be in the Cardiac ICU until he has recovered enough to be placed on the Cardiac Floor--they said this can take between 3 to 4 days.  As for a timeline on getting home, that is purely up to Conner and how quickly he recovers and how the doctors feel that his is progressing.  However we've been told to expect up to 2 weeks.

We will keep you all up dated as much as we possibly can.  Lindsay and I want you all to know that we truly appreciate all of the love and support that we have felt from everyone.  The emails and phone calls offering anything from play dates for Cayden and Allie, cleaning our house and shoveling snow, to meals, a shoulder to cry on and endless votes of confidence have made this very trying time in our life much much easier to handle.

With Love and Appreciation,

Keir & Lindsay Jones

Never a Dull Moment

Allie decided to make things a bit more exciting for us this week, and came down with a fever with rapid breathing/wheezing tonight.  Given our week, I immediately called our pediatrician, who saw us at 7:20 pm on a Monday night.  He gave her a breathing treatment, listened to her chest again, and then sent us to the ER for a chest x-ray and a variety of other tests.  I could hardly believe it.  As if we didn't have enough going on!  :)  The ER gave her a second breathing treatment since her oxygen levels were still low, and then did a flu swab, rsv test, and chest x-ray.  All I could think about was the possibility of Allie having pneumonia and being admitted to the hospital - a different hospital than the one Conner would be in!?!  OR...Conner getting sick as well, and having to postpone Conner's surgery.  In the end, Allie did not have RSV, the flu, or pneumonia.  A cold just settled in her chest and caused difficulty breathing.  We were sent home about midnight with a nebulizer, and some prednisone.  Whew!

Overwhelmed

...in many ways.

Conner's surgery is less than two days away, and I am overwhelmed at the thought of handing my sweet six year old over to a team of doctors for open heart surgery.  I always knew open heart surgery was pretty serious, but when your child is about to go through it, and you spend (way too many) hours reading about sternotomies, bypass, grafts, etc. it just hits you in a different way.

I am also overwhelmed by the number of phone calls and emails I have received in the last two days with offers to help.  I apologize if I owe you a phone call or email.  Please know that your call/email means a lot, and just knowing that Conner is in your thoughts and prayers brings comfort to us.  Grandma Jones is here to be with Allie and Cayden, and has a list of names & numbers should she need anything.  We are so blessed to have such wonderful family and friends!

I promise to keep the blog updated with the latest.  The cardiac ICU does not allow cell phones, so email and/or blog updates will probably be our primary method of communication.

We take Conner in tomorrow at 7:30am for the final pre-op meetings and exams, and his surgery will be on Wednesday morning.

Love & Hugs