Saturday, December 14, 2013

C's Update and a recommitment to blogging

C is doing very well.  He's up to 28 lbs.  He tolerates having his vitals taken, EKGs applied and gets only slightly grumpy during an echo.  Getting his height measured freaks him out a bit but overall, things are getting a lot easier on the medical testing front.  C is stable from a cardiac perspective and gaining weight again which will hopefully end his FTT diagnosis at some point.

We're in an interesting place with C.  He's in public preschool with an IEP.  Our main goal is to get him to play without lapsing into academic pursuits.  C can read, sentences, books, big words like "anthropology".  He sounds words out in his head and just speaks the word as he guesses it would be said.  It is amazing.  He's been reading since he was 2, which leads to an interesting shift in focus for his parents.  Instead of trying to teach him reading, math, shapes, colors, time, etc.  We are trying to get him to slow down and stop learning so much so quickly!  It sounds strange... but this really creates a gap in his social skills and a huge chasm that needs to be bridged socially.

The kids in his class love him and adore his idiosyncrasies as much as we do. Ultimately, balance will serve him better, so that is what we are striving for.

C is amazing and we are so glad to have him.  I'm sorry I stopped blogging, I'd meant to keep this up as a great way to keep track of our lives.  I tracked the high drama and have failed to keep up with the every day.

My New Year's Resolution is to ensure that I don't continue that mistake.  I am resolving to blog at least once per week.  We've got big changes coming, so look for a new post soon!  

Thursday, August 1, 2013

Holter Monitor Results, Better Late Than Never

Our doctor called and left us a voice mail regarding the Holter Monitor results. The lowest heart rates were in the 40's for brief times, average hourly rates were all above 60. The highest rate was at 160.

C did not drop any beats and remained in sinus rhythm throughout the test. Overall, this is a big improvement from where we were immediately following surgery when his heart rate would linger in the 30's.

It looks like we are not facing the need for a pace maker at this time.  Hopefully C will continue to grow into his heart.


Saturday, June 15, 2013

Holter Monitors... A Party In A Box :)

We had a cardiac follow up last week and everything went very well.  C's repair continues to look good.  His EKG showed sinus rhythm the entire time.  His trauma appears to be settling out, he wasn't nearly as upset with the EKG or echo this time.  Our doctor ordered what he said would be a 24 hour holter test, it ended up being 48 hours.

They have added an additional vendor for holter monitors since the last one we had to have.  We had a long waiting period last time and eventually had to be bumped ahead when it took more than a month and we still hadn't had the test.  This time, we went through Life Watch and used their ACT system.  We received a call when the order was placed, they told us when we could expect the monitor and scheduled a call for that evening so we could have live technical support as we hooked C up to the monitor.

The box includes all the batteries and sensor pads you'd need for anything up to 30 days of monitoring (I'm guessing) It was a LOT of batteries and sensors.  This system wasn't nearly as clunky and big as the one we used the first time.  We were able to apply the sensors, with minimal trauma even though C HATES stickers.  I think it was a lot easier on him doing this at home.

They provide a lanyard to hang the sensor around his neck, which I'm sure works great for an adult, but not so much with a 2 year old.  We ended up taking option 2, which is snapping the sensor to another sticker and sticking it to his abdomen.  The sensor transmits data to a cell phone.  I asked how they thought this was going to go with a 2 year old and they assured me he just needed to stay within 10 feet of the phone.  I ended up rigging a workable system.  We took our Dapper Snapper and ran it through the belt loops of the case they provided for the cell phone.  During the day, C wore the cell phone on the back of his pants clipped on by both the belt clip and the dapper snapper.

I had to call back tech support and figure out if I was allowed to lock the phone.  The thought of 16 toddlers with easy access to this dang phone had me very worried.  I finally figured out how to lock and unlock the phone and we were off... They had asked us to charge the phone overnight and if possible for a couple of hours during the day.  We didn't have a good way of ensuring the charger would make it back home at the end of the day, so we chose to forego the daytime charging.  The phone did die at about 3pm on day one, however, the sensor can store up to 6 hours of data, so we charged it again when he got home from school and just kept him in the bedroom so he would stay within 10 feet without a fight.

We drug a bunch of onsies out of storage for this adventure and they made things a lot easier.  However, the sticker wasn't strong enough and it came off before the end of the day.  Day 2, we  added an ace bandage (thanks for the idea Mom!) which distributed the weight of the sensor better.

C found the experience slightly annoying but survivable.

Wednesday, May 1, 2013

Ear Tubes

C finally got his ear tubes on 4/23.  Last time we were scheduled, he got pneumonia and we had to cancel.  This time, he got a cold about 3 days after ear tubes.  Last night was particularly stressful on a respiratory level.  We used his inhaler frequently to help get his respirations back under control.  He's doing better today, but did spike a fever at the end of his school day.

Hopefully these ear tubes usher in a new antibiotic free era.  Before tubes, we were having an ear infection on average once every 4-6 weeks.  Sometimes more frequently.  We're looking forward to a few less doctor's visits (though we do love our docs :)  ).

Thursday, April 4, 2013

Lost Pregnancy at 11 Weeks 4 Days

Warning: This will be a very graphic post.  Please don't read it if it will cause you distress.  This is a story of pregnancy loss.  I had a miscarriage on 4/1/13. This pregnancy was far enough along that it is something like a birth and will probably bring back traumatic memories for those who have experienced loss in the past.  Please be aware and don't read if it will cause you pain.  This is for my healing, and for those who come later looking for someone to share their story.  I found solace in reading other's stories of loss over the last few days.  

I found out I was pregnant very early.  I had a stomach virus, and I thought it might be pregnancy symptoms.  It turned out, it was both.  It was only 3 weeks and 4 days into the pregnancy.  I could hardly believe it was happening.  We'd been trying for close to 1.5 years.  I breastfed during most of that time, in fact C didn't fully wean until I was about 8 weeks pregnant.  This had been an odd cycle.  My fertility monitor never registered ovulation.  My charting software drew a cover-line indicating I hadn't ovulated, but I saw a temp spike that could indicate ovulation, and in the end, I was pregnant. We did early blood work, my HCG levels were rising well, but my progesterone was low.  It dropped from the first blood test to the second.  I was put on progesterone to try and offset the missing hormone.  We suspected it was because I was still nursing.  I was afraid it would sustain a pregnancy that wasn't meant to be, but I wasn't willing to risk that the pregnancy was viable, but my nursing C was the real concern.

Thursday, March 28th, I went to the doctor for my monthly checkup.  We heard a strong heartbeat at 171 beats per minute.  My OB smiled at me, I smiled at her and I felt so relieved.  We had just reached the 11 week mark.  I was feeling pretty good.  We were so close to the 12 week mark, after which, miscarriage odds drop so low.  I felt like we were out of the woods.  

Last weekend, I dreamed I'd lost a baby and I hadn't remembered it until then.  The dream was so real it took me almost 20 minutes to figure out whether or not I really had lost a baby.  I'd dreamed the baby was called Joe.  Later, after I fell back asleep, the dream got strange and I dreamed the baby had been pulled apart by dogs.  It was very scary and felt very real. 

On Monday afternoon, I had a strange awareness of my uterus.  I'd been having a bit of blood, but I had a cervical polyp, so that was expected.  I called my OB and she wasn't concerned either.  I was going to get my NT scan in 1 week, and see her in 3, so we thought I didn't need a check.  At around 9pm that evening, I felt a strange sensation and found that the cervical polyp had fallen out.  I was so relieved I was giddy.  I was so worried that polyp would do something to cause me to lose the baby.  About 30 minutes later, I started actually feeling contractions.  I called the on call OB.  He called back by 10.  While I was on the phone with him, my water broke.  At first I didn't realize what had happened.  I said "Something just came out of me".  I got up, the bed was wet, but it wasn't all blood.  I went to the toilet, and just after I sat down, I felt the baby start to slide out.  I caught him in my hands.  I told the doctor I had the baby, he was out and he was still moving.  My husband and I sat with him and watched him move until he was still.  He moved for about 5 minutes. We bundled him in a wash cloth.  The doctor asked me if the placenta had come out.  It hadn't.  He told me to call if I had any other concerns.  He said if I started soaking through more than 4 pads an hour, I'd need to go in and possibly have surgery to finish the miscarraige.

Thirty minutes after I got off the phone with him, I started to bleed.  I bled through a pad in about 2 minutes.  I looked down and could see blood pouring out of me like water from a faucet.  I called back the doctor.  He asked if I could make it the 25 minute drive to their hospital.  I didn't think that was wise.  While I stood still and my husband gathered clothes for me, blood pooled at my feet.  We got me dressed in clothes I didn't mine having thrown away. I used inserts from our cloth diapers to try and contain the blood. We gathered C and headed to the car.  My husband had put down a garbage bag and a bath mat on the seat to try to protect it.  We drove very quickly to the hospital.  We ran a few red lights, it was very rushed.  He dropped me at the front door.  I went in and calmly told the lady at admitting I was hemorrhaging, I had lost a baby and the bleeding wouldn't stop.  She had me fill out some paperwork.  We'd left my purse in the car, she needed my driver's license.  After I signed her paperwork, she disappeared into the back.  I stood in front of her desk and told her there was nowhere I could sit, the chairs were cloth and I was bleeding too much.  I waited what felt like eternity, but was probably only a few minutes.  I told her I needed to sit, that my extremities were cold, My vision was graying out and I was going to pass out.

She told me she'd informed them I was here, and I'd just need to wait.  I started chanting "I need a chair".  She sighed, got up and walked back to the entry, where there were wheel chairs.  She brought it to me and they helped me figure out how to sit.  I'm told I said "I don't want to die" then I passed out.  My husband tried to tear down the magnetically locked door to the ER.  A security guard came to see what the disturbance was about.  I am told I started foaming at the mouth.  My husband's efforts resulted in several people coming out to get me.  They quickly took me back to the room.  I came to as they turned the chair around to put me on the bed.  

They asked if they could cut my clothes off, and if I could tell them what was going on.  I explained the situation as clearly and calmly as I could.  A man who I later learned was the charge nurse reported to the doctor that I'd been told to call 911 but chose to drive to the hospital instead.  I vehemently corrected him.  I was told I should drive to the plaza, I didn't think that was safe and instead chose to drive to the nearest hospital.  If I had been told to call 911, I would have.  I would have hated it, even more people would need to have explanations as to what had happened.  My neighbors would have been concerned.  But if I had known I needed to, I would have. 

They spent some time trying to sop up the blood.  It just kept coming.  They placed an IV and started me on saline.  I kept having contractions, blood kept flowing.  I heard them outside the room on the phone with the on call OB. I started to shiver, I was very cold.  10 minutes after ,they first assessed me, they checked me again and the blood had not slowed.  They covered me with warmed blankets, started a second IV to get more fluid into me.  They inserted a foley catheter, that was quite unpleasant.  They worked to clean up the blood that ran down my legs. I continued to bleed.  They used a  speculum with a light to try and see if all of the "products of conception" had made it out.  The amount of bleeding indicated it probably had not.  The on call OB told them to give me IV pitocin, an intramuscular shot of methergine and 4 pills of cytotec as a suppository.  All in all, it was most unpleasant.  Once all the meds were in, after yet another check with the speculum, I passed the rest of the placenta.  They removed it and several more clots with forceps and the bleeding started to slow.  

After 10 more minutes, it was time to move me up to the floor with the OB nurses.  They asked if I wanted to keep the baby.  I couldn't stand the thought of him being thrown in the trash, so I kept him with me.  The nurses on the OB floor were very kind.  They helped clean up the blood once again.  It was around 3am.  I finally got to see my husband and son again.  It had been several hours and I was glad to see them again.  I sent them home to sleep, I slept an hour and a half.  We hadn't had time to grab anything, all I had was my phone.  I e-mailed work to let them know I was in the hospital.  They sent their condolences and FMLA paperwork.  I asked if the baby qualified for bereavement leave.

I asked repeatedly to have the cath removed.  It wasn't working correctly.  I had to work to push urine through it. Finally, I met the OB that had been supervising my case overnight.  She said we could get rid of the cath.  They also removed one of my IVs.  The ER uses the crook of the arm because it is easiest, but it is also the most uncomfortable.  I couldn't really bend my arms.  

The OB was very kind.  She told me this was not my fault, that in all likelihood this was a chromosomal problem and there was nothing I could do.  They offered to take care of the baby for me. They also informed me there was a funeral home in town that would cremate him for me if I'd prefer.  We chose the cremation option.  I asked if they could take a sample of the baby to determine if there were chromosomal problems.  Pathology said they could not do anything with the baby at this point.  We chose to take him with us.  

My OB called, she was very sad and concerned.  We spoke at length.  They don't believe it was the polyp.  This is just one of those things. We called the funeral home and they explained that since we were residents of the county they served, they would perform this service for free, as they do for any baby born to residents of this county, regardless of gestational age.  We were overwhelmed with gratitude.  We made an appointment to drop him off as soon as I was released from the hospital. 

I've received a ton of support and well wishes.  The day after I lost the baby I was very angry with my body.  I felt he'd still be alive and fine if it hadn't thrown him out.  I discussed the situation with my aunt who works in Maternal Fetal Medicine.  We thought about the fact that my progesterone was low, we talked about my age and all things that could be.  She assured me that progesterone could support a baby and depending on the chromosome issue it could continue to develop right up until there just wasn't enough hormonal support for it to continue.  I'm working to find comfort in that answer.  It sounds right and it feels right.

I'm worried about the age spread between C and his next sibling.  I don't want him to be an only child.  The clock is ticking.  I am trying to figure out how long I can wait, when we'd have to start trying to adopt if my body won't sustain a pregnancy and a thousand other things.  I know in my head it is a bid for control, I hope time will give me perspective.

So many people have reached out to support me, I've worked hard at accepting that help and I so appreciate everything everyone has done.  For those who have disrupted their lives and changed their plans to be there for me, I am incredibly grateful for everything you've done.  Thank you to everyone for their positive thoughts and kind words.  This has been a very difficult experience and it is one I pray I won't have to repeat.

There are so many other moments that stand out for me. Since I was in an L&D ward, I took time to educate on CHD.  They were happy to say the entire hospital network performs pulse-ox tests on all newborns as a matter of policy.  I was happy to know that and they were happy to learn about my experiences as a CHD mom.

We took a few pictures of Joesph just after he arrived.  I chose not to include them here, they are personal and I've seen what people do with those kind of pictures on the Internet.  He was beautiful and looked perfect.  He had 10 fingers, 10 toes and I could see his fingernails. I'm sorry he couldn't stay, but I'm glad I met him.

Tuesday, January 15, 2013

The Water is Chasing Me!

Look at me, posting twice in the same week!  I wanted to be sure I saved this story for posterity, it is that funny.

C was running around sans diaper a few days ago.  From across the room I heard a panicked shriek.  "The Water", he cried "The Water".  I looked over and he was peeing.  He started backing up and then he whimpered "The water is chasing me" as he frantically backed away from the stream of urine he was generating.  He looked so forlorn and confused, it was absolutely adorable. I took this to be a sign that we are NOT ready to potty train yet.

Monday, January 14, 2013

2012 – A Year In Review

The dawn of 2012 (or February as we'll call it in this post) saw us heading toward the tail end of another cold and flu season. Since our life continued to revolve around C's many medical trials and tribulations, the cold and flu season continued to be particularly troublesome. Toward the end of February as my husband and I approached our first 100% anniversary, C came down with a Very. Bad. Bug. Even though we were on Synagis for a second year, he had RSV. We were at the tail end of the effectiveness of the shot for the month when he got it. As soon as we got next month's dose, he got a whole lot better. All in all, not a lot of fun. It was the start of lingering respiratory issues that would plague us for most of the year.

The end of February also saw TheMan and I reach our first 100% anniversary. TheMan is only required to do something for our anniversary when we hit 100%, so it was a big year for him. He made us reservations at the melting pot. The Saturday night of our celebration rolled around and C was sent off to visit Mimi and Papa. TheMan and I dressed up and had a lovely 3 hour long dinner at the melting pot. It was a lot of fun.

After we had our bout of RSV, life became a series of illnesses and ER visits. I began to fear we were facing asthma issues. Nothing seemed to control the flare ups. Anytime C experienced even a mild fever (99.3 degrees) he'd start retracting. He was wheezy with any illness and all in all, anytime his system took a hit, he had no reserves. C continued to gain and lose the same pound or two. Even though he grew in height much of the year, he didn't gain weight and in the end, tumbled completely off the weight chart. By the end of April, we had a rescue inhaler and had been on steroids multiple times. I think the final straw was the last weekend in April. My MIL called me at 1:30 in the morning. As a respiratory therapist, she simply wasn't comfortable keeping C any longer. She brought him home and when I heard how he was breathing (stridor and wheezing) I knew we needed to take him in. We ended up in the ER under observation until 9 in the morning. Finally, after hours of breathing treatments, we were allowed to go home. It was a close call between admission and going home, but we were pretty comfortable assessing his breathing, so in the end, they let us go.

After months of soul searching and second guessing, I decided I had to do something different. I gathered our medical information together in early May and sought a second opinion from Children's Hospital Boston (CHB). CHB is the number one children's hospital in the country and the top hospital when it comes to pediatric cardiac care. Researching the issue of mitral valve regurgitation lead me to their congenital valve program, the only program of its kind in the country. The surgeon leading the efforts of that program is Dr. Chris Baird. For months, our local cardiologist had been counseling patience. He wanted us to wait until C was larger and have the valve replaced. He was convinced that repair was not a viable option and that an eventual repair was a foregone conclusion.

Just days after I delivered our medical records to Dr. Baird's assistant at BCH, I received a call back from Dr. Baird himself. It was a Friday night about 7pm, which is 8pm in Boston. He called to tell me he had reviewed our records along with Dr. Gerald Marx, our newly assigned cardiologist and from what he saw, he thought that a repair was our best course of action. He advocated for the repair to occur very soon. He explained that he could see an open cleft in C's mitral valve, and that closing that valve would almost certainly resolve our weight gain issues, lung issues and most likely ensure a permanent solution to C's problems. The odds were heavily in our favor that he'd never need surgery again.

I was shocked. I honestly expected to be told we should do a repair a few years down the road. I had believed our cardiologist's theory that the weight gain, repeated illnesses etc were unrelated to the “mild to moderate” mitral valve regurgitation we were told C had. The surgeon and cardiologist at CHB had a markedly different opinion. They felt the issues C was experiencing were most certainly related and absolutely should be addressed quickly. Unlike our local cardiologist they did not see a benefit in allowing C's heart to enlarge as they didn't want to place a prosthetic valve. They wanted to repair the valve he had, which was growing larger, less elastic and more fatigued with every passing month.

Our local cardiologist urged restraint. He counseled me that we could still end up with a valve replacement and if we did, we'd have to do it again in just a few years. He stressed how much of a gamble he felt this was and how much he felt our medical issues were unrelated to C's cardiac status. I began researching mitral valve replacement and Dr. Baird. Researching him and the congenital valve program at CHB lead me to a paper entitled “Mitral valve operations at a high-volume pediatric heart center: Evolving techniques and improved survival with mitral valve repair versus replacement”. At this point, our occupational therapist (OT), pediatrician (ped) and gastroenterologist (GI) all felt that the cardiac issues C continued to experience were negatively impacting his health. In the end, I felt that the opinions between CHB and our local hospital were so different that we had to seek an impartial third party.

Between January and May, C had gained .25 to .5 lbs. You could clearly see his ribs and count all the nobs of his spine. He was eating as much as he could, and he was starving. In June of 2012, we undertook a 3 day nutrition challenge where we recorded every calorie C ate. He'd been on an appetite stimulant called Periactin for almost 3 months at that point and though his appetite was much improved, we still seemed to yo-yo wildly and not gain ground. The nutritionists calculated the calories C ate over that 3 day period and found he was eating 120% or more of his caloric needs and still wasn't gaining weight.

I contacted Children's Hospital of Philadelphia (CHOP) in June following the nutrition challened. CHOP is the second ranked pediatric cardiology program in the country. Our local cardiologist had cautioned that BCH was an aggressive facility that treated sooner rather than later. He explained CHOP could go either way, but was somewhat less aggressive. I spoke with their second opinion coordinator and explained that I needed an impartial third party that would tell me what course of action they'd advocate with the understanding that we wouldn't be following any course at that hospital, but rather be choosing between 2 courses of action at other hospitals.

CHOP created a wonderfully diplomatic and amazingly informative letter that taught me more about my son's current condition than any information I'd received in the year preceding that. They corrected a few errors in the report information provided by our local heart program. Their explanations highlighted the misunderstandings our local program had regarding my son's condition. They also confirmed the opinion of BCH, our OT, GI and Ped, the tremendous issues we were having with respiratory health, weight gain and growth were a direct result of the severe mitral valve regurgitation that C was experiencing. Both BCH and CHOP suspected that C was also experiencing some degree of Pulmonary Hypertension due to the 2 jets of back-flow shooting across his atrium with every beat of his heart.

Given my new information and the fact that CHOP firmly agreed with BCH that we should repair that valve. I once again contacted Dr. Baird's personal assistant in early August. I sent the latest echo which I hoped was clearer as it was performed by our favorite sonographer. Both BCH and CHOP had commented on the quality of the previous echo and the problems they had viewing the study and by not having all the views needed.

Dr. Baird called me back 2 days after he received the latest echo. He again called late in the evening and he spoke with me at length. He stressed the fact that he truly felt C's current valve was repairable. He explained how he'd handle the repair and his thoughts that it would be the last open heart surgery (OHS) we'd ever need. TheMan and I talked it over and faced a circumstance that we'd thought would occur in the distant future. Originally, when we were told of C's regurgitation immediately following his first surgery, the surgeon said he could last a “long long time” with that level of regurgitation. At the subsequent follow up 3 months later, our cardiologist told us it would be well into his teen years before we needed to address it. 3 months after that, he said it would be the early teens. 6 months after that, he said he thought he'd get to his teen years and the final appointment before we decided to go to Boston, our cardiologist said he hoped we'd get 3 more years. Deciding it would be this year instead of 3 years from now was actually still pretty wrenching, but the chance of having this be the last surgery and finally being able to put some weight on C lead us down that path.

C's second birthday was August 9th. On August 10th, BCH called and we scheduled his open heart surgery for September 26, 2012. The week that followed I was a whirlwind of activity as I gathered documentation for the insurance company, secured lodging through patient and family services at BCH and transportation through the Angel Flight network. Once that was all handled, I was stuck with waiting and worrying. Once we decided to have OHS, I did contact my insurance company and asked for a dedicated coordinator. Calling Customer service did not work, as they didn't know what I was talking about. My benefits coordinators through my work were able to help me and a complex case manager was assigned. She was fantastic and helped me navigate the insurance maze with ease. She complimented me on my knowledge of my son's defect and told me I had educated her on the condition more than she ever could me. In fair trade for that, she certainly educated me on the ins and outs of insurance.

Coventry is an amazing and wonderful insurance company who surely helped my son receive the appropriate medical treatment using their national network. I provided documentation from my cardiologist, pediatrician, the third party opinion from CHOP and a personal letter explaining why I felt the appropriate level of care wasn't available locally. Coventry took that information seriously and sought to help me meet my son's needs. After the many horror stories we've seen on the news, I'm incredibly pleased to say my experience has been anything but a nightmare. All of my claims and issues have been handled calmly and easily. I can't thank the employees of Coventry enough for their tireless work.

C caught yet another upper respiratory infection the first week in September. He again started wheezing and his respiratory rate was elevated. We went to urgent care (because they won't keep us) and they gave another nebulizer (nebs) treatment. More than anything, I wanted to ensure he didn't get a lingering ear infection and didn't have pneumonia. His respiratory rate was 58, 2 short of what it takes to get sent to the ER... so they let us go home. A quick check of his ears did confirm yet another ear infection(we get them with every head cold). We got a prescription for antibiotics and we were on our way home. It was 3 days before the beginning of the 3 week window in which any illness can cause surgery to be rescheduled.

I pulled C out of daycare and I started working from home on September 10th. I became a germaphobe for the second time in my life. I invested in hand sanitizer and bought 10 (yes 10) buckets of sanitizing wipes. I wore masks when I left the house and didn't let anyone come within 10 feet of C unless I knew exactly who they'd been around in the previous days. I'm sure I was neurotic and my husband had the patience of a saint to put up with it. I even called the Yawkey Family Inn (which is like the Ronald McDonald house) and asked if they had any sick people there. I was beside myself with anxiety and looking for anything I could control.

Toward the end of the antibiotics for C's ear infection, I noticed what might be thrush in C's mouth. I semi-franticallyy called the nurse line and asked if I could start nystatin. She called a prescription in for me and we determinedly worked to ensure C would not have thrush when we headed to Boston.

Four days before we were to leave for Boston, the pilot who was going to fly us there called with bad news. Some part on his plane had failed and wouldn't be fixed for 3 weeks. He also had a cold. There was no way he could get us to Boston. In the 4 days leading up to our leaving, I researched and learned everything I could about flying with a toddler and with a sick child. It wasn't my original plan, but it ended up working OK. Delta Airlines and the TSA in Kansas City were fantastic. I'd called ahead and informed them we'd be there and that I was attempting to ensure he didn't get exposed to any germs on the way to Boston.

TheMan and I had a slick system for traveling. He'd pre-board with the special needs boarding. He'd wipe down all the hard plastic surfaces with clorox wipes and install the car seat. Meanwhile, I'd wait until absolutely everyone had boarded and then I'd bring C on last and get him settled. C was “All Done” from the moment we sat him in the car seat. He proclaimed this fact loudly and repeatedly for the first 10 minutes we were in the air. Luckily things settled down for him after that and it was a smooth and quiet flight.

The day after we arrived in Boston, we spent an exhausting and exhaustive day at preop. C was checked for everything under the sun and signed up for several different studies going on related to OHS and congenital heart defects. We tried to get as much fresh air as we could and spend time enjoying the world without exposing C to anything unnecessarily. On Tuesday, my mom and sister arrived and provided amazing emotional support. Surgery was bumped and ended up being September 27, 2012. It was as breathtakingly terrifying as the first one. We got through it, the surgeon, doctors and staff at BCH work tirelessly and are absolutely the best in the business. They amazed me with their skill and professionalism. I cannot say enough good things about our stay there, nor can I express how happy we were to leave. Much love to all, but seriously, hospital life sucks.

When we were discharged from the hospital we were left with two major issues, C's sinus node was not functioning correctly after the surgery which led to bradycardia and a persistent junctional rhythym. Electrophysiology (EP) is the department that handles the electrical system within the heart. At our consultation with them, they said not to worry about his heart rate and to give it is at least 4 months before even thinking about interventions such as a pacemaker (cue immediate and persistent worry about a pacemaker now). C's heart rate would dip into the 30's during the night and routinely was lower than 60 during the day. I learned something I never knew. If any person's heart rate is below 60, that is one sign to start asssessing that person to see if they need CPR. This is a very disconcerting to be in when you leave all those lovely and reassuring monitors behind.

My fondest memories of Boston are of C playing in the green courtyard of Harvard's Medical School. The days were beautiful and he had so much fun. I couldn't believe my child was running full speed through the yard seven days after he had had his heart stopped, reconfigured and restarted. We headed back home from Boston the following Tuesday after a followup with Dr. Marx. Who, along with Dr. Baird, continues to be one of my favorite people in the world. 

After returning home, we kept C out of school for 5.5 weeks until just before the expiration of the restriction on lifting him under his arms. The first 4 of those weeks he remained in isolation to ensure he had plenty of time to heal before we risked an upper respiratory infection. It was surprisingly hard to let that go and start living again. But it became liberating in its own way. I was so thrilled to be able to take C to the zoo. Before surgery, I was so scared that he'd never get to see it.

In October, C went to wonderscope with his Mimi, on adventures with his Grandma and went to the zoo twice. Once with just Mom and Dad and once with Katie and Jake for Boo at the Zoo! Much fun was had on both occasions.

Thanksgiving was at our house this year. We had a huge turnout with 22 people spending the afternoon with us. It was a lovely day and we were so happy to have our family with us. That Saturday we celebrated my nephew's birthday, which was a quieter affair, but no less enjoyable.

Over the 7 weeks since we let C out of his bubble post OHS he's almost consistently had an upper respiratory infection along with a sinus infection, multiple ear aches and 2 stomach flus. Just before the end of the year we received word that we do indeed need to get ear tubes and I'm working to get us into the ENT.  With all that, we've had no major respiratory flare ups and C's maintained his appetite and continued to gain weight.  His sick is a lot like his healthy used to look.   I continued to breast feed C 3-6 times a day through the end of the year.  I can only imagine this has helped, I can't picture how often he'd be sick without it.

C had a lovely “Word World” Christmas this year. He doesn't really understand Christmas, or gifts, but he loves having time with mom and dad and playing, so he counted it as a win. We end the year with a academically advanced kiddo who could care less about the other skills he should be growing. He's on the verge of reading, he LOVES to spell words, can count as high as he feels like, but doesn't jump and rarely throws stuff. He has no interest in cars or other “age appropriate” activities. But he can spell his classmates names, knows the days of the week and the months of the year. A bit lop sided, but we're working on it.

On a work front, the husband and I are both happily working to keep modern in a rapidly changing programming landscape. We enjoy it.