And so it begins...

Last night Micah spiked a fever and began complaining of ear pain. He took him straight to the ER and they said he didn't have an ear infection but he did have bronchitis. He and I barely slept last night. He coughed and whimpered all night and I ran his nebulizer every hour. He has barely eaten in the last 24 hours and has almost no energy. He usually runs around the house all day and refuses to take naps. Yesterday, and so far today, he has spent his time on the couch watching movies and coughing.
Sadly with his Tetrology of Fallot, his immune system is a lot weaker than a normal kid. Every time he gets sick, it gets worse very quickly. He has gone from sniffles to RSV in a matter of 48 hour in the past. With bronchitis, he could get pneumonia very easily. Please please pray that his doctor has a way of easing his breathing (especially while he sleeps) and that they have an antibiotic to kick this thing out of his body. The Kansas City hospital is so far away and I don't know if our base hospital can handle him.

We met the new pacer team!

For those keeping up...Micah had an appointment in Kansas City to meet with his new pace maker team. They are very thorough there. We waited a little while because everyone involved was reading Micah's "novel". They ran 2 EKGs and did a FULL pacer interrogation. There is something heartbreaking about your 3 year old grabbing his chest and saying "Ow! I don't like tha

t! Mommy make her stop!" It is amazing, though, that he knew that the nurse running the interrogation was the one messing with his heart rate. They were also amazed at how well behaved he was. He stayed still for everyone. The pacer doctor even said that they need to send all of their babies to Boston to learn how to behave in an examination. Results! Micah's battery only has about 1 1/2 year - 2 years left. His right ventricle is pulling more energy than they were expecting. They are hoping that this is only because he is fighting off a cold virus and that in 2 months everything will be fine. If not then Boston will need to make a decision about changing the battery again soon. Everything else looks good. All chambers are firing and his heart rate is perfect. Please pray that his heart is only drawing more power because of his cold and that there is no underlying cardiac problems." 

3 Years...

3 years. 3 years ago I handed my baby over to a nurse who took him away. 3 years ago I sat in the OR waiting room of Children's Hospital Boston watching the seconds tick by like hours. The hours like days. 3 years ago I felt fear and panic every time the waiting room nurses walked by. 3 years ago I sat in almost complete silence with my husband as we waited for news for our sweet little baby who was in the OR unhooked from his heart in an attempt to save his life. 3 years ago I tried desperately to read the face of Dr. Fynn Thompson, as he explained Micah's surgery, to figure out if Micah would survive. 3 years ago I saw my little baby, with tubes and wires coming out of his tiny body, and seeing his cheek pink for the very first time. 3 years ago, Micah SAT'd at 100% for the first time. 3 years ago began a journey of wonderful ups and terrifying downs. 3 years ago today, Micah had his TOF repair and the first of many surgeries, illnesses and battles to fight. Micah fought hard and continues to fight to stay here with us. I cannot imagine a way to express my gratitude to Children's Hospital Boston, the amazing staff of 8 South, East and West and ALL of my incredible family and friends who have prayed without ceasing for Micah when he is well and he we don't know what will happen next.

Prayers are needed...

In my search for answers for how to best care for Micah and to find support with other TOF parents I have met some incredible people. One of them has become a good friend and her baby needs prayer. Joanna is the amazing Mommy of Baby Gabriel. He is a new born with TOF. He has not had his repair yet but his health has become more concerning. His doctors have found fluid around his heart and he will need his repair in the next 6-8 weeks. This is a lot sooner than they originally anticipated. Gabriel, his Mommy, Daddy and big sister need our prayer. I know how they feel. Being scared about not knowing the future and watching your baby be uncomfortable and not being able to do anything about it. Please please pray for Gabriel, his family and his team.
The following is a post from his Mommy:

"I've debated posting, but decided that the people that care for updates will want to know so they can start praying again. The news we received yesterday wasn't what I hoped for. Gabriel has fluid around his heart, which was causing him pain. Gabriel is set to have his next open heart surgery in 6-8 weeks (or so), which is months sooner than we thought. He will have two procedures between now and then in the heart cath lab, where they will try to balloon his pulmonary artery. These procedures carry risks, but we have no choice. His pulmonary atresia(stenosis) is bad and it makes for more surgeries for my son. Please pray for these procedures to be successful, pray for my sons strength to get through all this. As I type this the tears stream down my face. I simply can't understand why this is happening."

Just a couple months later...

Well it's been a couple of months since I last posted on here. We have finally settled into life here in Kansas and since school has begun, we are getting into our patterns. Micah has been doing very well. We met his new cardiologist earlier this month and they ran every test on. (EKG, Echo) His heart looks great!!!! Dr. Kaine was very pleased with his pumping strength and that his rhythm looked good with the new pacing system. Dr. Kaine had decided to put him on the 6 months check up schedule. This is great news!!! This means the new heart meds and the new pacing system are still working the way we need them to.
We had a scary weekend during Labor Day weekend that had me worried that things were changing back to the way they were last year, but it turns out it was only he asthma/reactive airway disease acting up. We had to bring him to the ER a couple of times because he was wheezing pretty badly. He thankfully hasn't had a problem since then.
Just last week he began PreK and he L O V E S it!!! He is becoming such a big boy. He's almost completely potty trained (only rare accidents) and he loves being just like his big brothers and sister. 2 weeks ago we had his speech evaluation to try and continue his therapies from New Hampshire here. It turns out that, even though he has a little lisp and sometimes struggles to get his point across, he is at age appropriate development. He is in PreK as a Peer Example for the kids in his class who may struggle with speech or movement. I am beyond proud of him!!!!! He is amazing!!!!
There were times when he was a baby that I really wasn't sure we would see this day. His battle to be healthy has had so many twists and turns and ups and downs that even last year I was wondering if his heart would get the better of him. But his fight to stay with us and the amazing doctor's and nurses in Boston and New Hampshire have given him back to us again and we are moving forward with life. Micah is a great example of just how incredible and precious life really is and that it should be fought for with everything you have.

We've got a doctor!!!!!

I am very happy to announce that we finally have a cardiologist in Kansas for Micah!!!!!!! It took a little finagling with our insurance company but we will be meeting Dr. Stephen Kaine on September 7 in Kansas City. This is the doctor that Dr. Cecchin wanted Micah to see. YAY!!!!!! I'm so excited!!!!

We made it to Kansas.

Well that long awaited day came; we left NH and moved to KS. It was 3 long days of driving but we made it with our sanity intact, thanks to some awesome travel kits, sent by my grandmother, and a DVD player. It took a few days but we found a wonderful home in a great neighborhood. We are close to the school and hospital and just a few minutes from the base. The kids love it here. We actually have a yard for them to run in they have used it every day that we've been here.
Micah did great! He is still happy and healthy. After we arrived I realized we were low on his meds (probably should have checked that before we left) so we made an appointment and met his new base pediatrician, Dr. DuBois. She's awesome! So sweet and very very thorough. She did not just assume she knew what was going on with Micah but asked me lots of questions and actually listened to me. She also put in the referrals for Micah's new team at Children's Mercy in Kansas City (BTW, we drove by it on our way through Kansas City). I should hear something back from TriCare soon and then we start making appointments. Dr. Cecchin gave us the name of a doctor he thinks is good enough to treat Micah. A Dr. Steven Kaine. I am anxious to meet him (Dr. Cecchin sings his praises) and have him look at Micah.
It feels weird to be so far from Boston. I know there is a hospital here that can handle him, but there is a voice in the back of my head that keeps saying "What if... What if...". We do have appointments for Micah in Boston next May so we will be going back. I refuse to give up Micah's Boston team. They quite literally know him inside and out. They know when he's okay and when something is really wrong. I have confidence there. Oh well, as we settle and I meet this new team I have no doubt my confidence will build here too.
Life is never static, it is always fluid; especially for a military family. Let the adventure begin!!!

A day in Boston!!

So the trip to Boston was fun. Micah was amazing, laying still for his ECHO and EKG and only being a little wiggly during his pacer interigation. We also got to see Dr. Cecchin and he gave us the name of Micah's new cardiologist in KS. Dr. Stephen Kaine is his name and he and Dr. Cecchin did their resdiancy together. Dr. Cecchin says he considers Dr. Kaine to be on the same level as Dr. Borwn. No...w for the results...Micah's EKG is clear, his pace maker is working great and should last Micah another 2-3 years. The Echo (the most telling test) came back great too!! His heart looks great! He has a strong beat (thank you pacer) and his atrias and ventricles look great too. That's right! His left venticle is functioning amazingly!! They measured the pressure and strength of squeeze and it's at the bottom level of normal for a NORMAL, HEALTHY heart. Dr. Cecchin told me today that last November they were seeing signs of complete heart failure and they were going to give Micah every chance to pull out of it before they told us about it. They did and Micah is back to "normal". He is no longer showing signs of heart failure!!!!!

I really need to keep up on this blog :-)

Sheesh, it's been so long since I updated this page. Micah is doing great!!! In January, he began taking Enalapril to help ease the pressure and work on his heart. After an echo, he was showing signs of heart failure in his left ventricle. The doctors decided to try medication before looking at more surgical options. Their hope was that the weakness/failure was due to Micah's heart working too hard and it wasn't able to rest and heal. The Enalapril is a wonder drug!!! Within just a week there was a visible change in Micah. He began growing and putting on weight!! In January he was barely in the 10% for his age. After his last echo, February 28, he was in the 37.9% weighing 29 lbs and he was 34 inches. Not only was he grown but his heart was healing. The hole in his heart that had been patched was finally completely healed and his left ventricle was finally recovered and pumping the way it should. His lungs were clear and his liver was back to it's normal size. Since starting the medication, Micah only naps maybe 4 or 5 times a week. He is full of energy and even more playful than he was before his new pacer and medication. He does need to sit and rest for a little while if he has been running or playing hard, but that is normal for TOF babies. Dr. Gauthier was thrilled with his progress. She said that the only "concerns" in his heart were all Tetrology related. Things we already knew about and have plans for. We'll be going to Boston on April 10 so Dr. Brown and Dr. Cecchin can see him and run their own tests. They want to get their hands on him one more time before we move to Kansas in May. I am so glad they are too. I am very nervous about this move and how he'll handle it. Knowing his doctors have seen him and they say he's okay will make moving a lot easier. Thankfully we are keeping all of our doctors here in Boston, we'll simply come back once or twice a year to see them. We''l have local doctors in Kansas too, but all decisions will be made by our Boston doctors. We love them so much. They care so much for and about Micah and that gives us so much comfort. Knowing that the best doctors are following him and doing everything they can to keep him healthy is wonderful. Thank you all for your prayers and support these last 2 1/2 years. I'll keep you updated about the April appointment.