Monday, July 1, 2013

Entering the next stage in our journey...

Ok so I have been avoiding writing this blog post like the plague. Seriously, I have sat down to write this countless times in the past few months but just couldn't do it. There is no more avoiding it. 2 weeks from now we will be in Philadelphia for Jacob's third and final planned open heart surgery (The Fontan).

Before I get into that let me catch you up on some other pretty big things that have happened since I last blogged (which was months ago!).

Jake and Aidan had their birthdays. Jake is 3 and Aidan is now 6. My boys are getting so big so fast! We partied hard this year lol. Each of the boys had small family parties and then we had a big combo party at pump up the fun.

Jake started pre-school. He is actually on summer break now but he had 2 months in a special needs pre-school class. We love his teacher Ms. Jessie. He did so well. I know it is going to be really good for him to be around other kids his age and have that interaction. He will also get speech twice a week. That is in addition to the weekly outpatient speech he gets.

Jacob's local cardilogist retired. Dr. Heydarian is like family to us. He took care of Jacob like he would his own son. He would call us when we were out of state for surgery to check on his "Buddy". I am very happy for him that he got to retire but we will miss him.

Aidan graduated Kindergarten! I can't believe that I now have a first grader. I am so proud of Aidan. His did so awesome this year. We were so blessed to have an amazing teacher. We love Mrs. Clark and she set the bar really high for any future teachers. Aidan is so smart, he got all M's on his last report card. M stands for mastery and is the best grade you can get!

Aidan also lost 2 teeth over the past two months. He is getting so big!



The Fontan is the third in a series of open heart surgeries that Jacob needs to survive. There are two different methods, Jacob will be having the extracardiac fontan.

The Children's Hospital of Philadelphia has a great video series which describes the surgeries for Hypoplastic Left Heart Syndrome.
Click here
to watch the video and learn more about the Fontan.

The phrase Post-Fontan is music to the ears of single ventricle parents. It is what we look forward to, it is a huge milestone for single ventricle kids. Their oxygen levels increase and they have a lot more energy (I find that hard to Believe because Jake is constantly going lol). We know from the get go that our kids need 3 open heart surgeries and we dream of the day that we can say they are Post-Fontan.

Although I can't wait to be post-fontan, I have to go through the darkness to get to the light. I am not looking forward to the next few weeks or the next few months for that matter. It makes me physically ill to think of having to hand Jacob over again for another major surgery. The recovery after his airway surgery was so rough on him. I hate the thought of him being scared and in pain. Despite the fear I know that Jacob needs this. I know he can't survive without this. I know I am strong enough to get him through this. And I know he will rock it. He has to, I can't let myself think any other way. It will be hard, it will be hell for a few days (Maybe weeks) but I am just dreaming of the day we get to come home with our amazing little boy and celebrate being Post-Fontan!


July 14th
We will be driving 9 hours to Philadelphia (Our home away from home). We are on the list for the Ronald McDonald House but it usually takes days sometimes a week or longer to get in there. Please pray we get in because staying at a hotel is really expensive and we can't afford that.

July 15th
We have a long day planned for pre-op at the hospital. Here is the plan.
  • Cardiac Echo- ultrasound of the heart
  • EKG
  • Bloodwork- If you have followed this blog for a while you know how difficult it is to get Jacob's blood. His veins are all scarred over. They usually have to get him by using an ultrasound guided IV placement. Please pray they get him without hours of screaming and poking. It breaks my heart. 
  • Sedated Cardiac MRI- Jacob's echo looked so good the last time they didn't think he needed a heart cath (YAY!). Many hospitals are now doing Cardiac MRIs instead of caths. This is a 3D rendering of his heart. I am actually kind of looking forward to seeing this. 
  • Sedated MRI of the Brain- CHOP is currently doing a study which I am actually really interested in. They are doing a study to see if the difference in blood flow to the brain Pre and Post-Fontan has anything to do with developmental delays in single ventricle patients. They are going to do a MRI of his brain before his Fontan and another 6 months after and see if the difference in circulation has any effect on brain development. Another reason I am interested in this scan is when we went to the neuro-cardiac clinic in Cincinnati they recommended we have one done because of his speech and developmental delays. The MRI can show us if Jacob has ever suffered a stroke without us knowing about it. He also had a bad fall a few years ago and it will show if there is any scarring which cause damage to his brain that could be causing delays. It won't change anything in the course of therapy and there is no reversing any damage if it occurred from either the fall or a stroke but it would help give us more pieces to the puzzle. I told them we didn't want the MRI done at the time of the clinic because we knew they would be doing one before his surgery. They agreed that there is no urgent medical reason that we couldn't wait so that we wouldn't have to sedate him twice. This way he can get it done while already under anesthesia.
  • Meet with Anesthesia- Sign lots of forms saying I understand all of the risks
  • Cardiology Appointment- Meeting with his Cardiologist at CHOP to go over results and surgery.
  • Hematology Appointment-  We need to meet with the hematology team to discuss his post-op treatment. Jacob got a blood clot while recovering from his airway surgery. They did bloodwork after that and found out he has a rare factor IV leiden gene mutation. This gene puts him more at risk for clotting if he is immobile for a long time or after major surgeries. Because of this he will need to be on a stronger blood thinner after his surgery. They will be giving him Heparin. He will also need to go back on the lovenox injections. Remember those shots we had to give him for months after his airway surgery. How can I forget, we hated them. Well he will need them again. The good news is it should be a prophylactic dose. That means he may not need to travel to Cincinnati every month to check his levels etc.
July 16th
SURGERY. Jacob will undergo his third open heart surgery. We yet again hand over our baby to the man with the magic hands, Dr. Spray. It never gets easier handing our baby over for surgery but we are really lucky to have such a talented surgeon. Dr. Spray is world re-known. I know Jacob is in the best hands possible.

We were told to expect 2 to 4 weeks for recovery.  Andy, my mom and Aidan are staying for 2 weeks. If we are not home by then, they will head back to WV and I will stay with Jake at the hospital. My mom will watch Aidan while Andy is working and sleeping. I am praying we can all come home together after a week but I always say.. I plan for a few months and pray for a few weeks. I learned a long time ago not to get my hopes up about when we will get to go home. We will be home when Jacob is ready. We are on his body's time table. The bad thing about the Fontan is that the kids tend to have a lot of fluid build up around their lungs. They are put on a lot of diuretics post-op but sometimes they end up needing to be re-admitted for a chest tube. I don't want to rush home and find out he needs to go back. If we do get home and something like that happens then we can always go to Cincinnati for a chest tube but I would rather stay there longer and make sure he is good to go before we go home so we don't have to go back at all.

We wanted to do something fun for the boys before having to spend our summer at the hospital so we recently took a trip up to Cass Railroad. Jake loves trains and talks about them all day long.  I emailed Cass and told them about Jake and wanted to see if he would be able to see the inside of the engine and see the train up close. The superintendent scott wrote me back and gave Jake a trip to remember. He not only gave him a full tour of the train shed but he gave us 5 tickets on the 2 hour train ride and let us stay in one of their company houses the night before. It was such an amazing mini-vacation. The boys had a blast and it was just what we needed. If you read this Scott, thank you so much. I can't tell you how much this meant to Jake and our family.

Jacob with Scott, the man who made this trip possible.


So there it is, the countdown has begun.  I will post frequent updates on here while at the hospital. Until then, we will be taking in every precious moment and getting lots of snuggles with our little guy. Please continue to keep Jacob and our family in your prayers as we embark on this next stage in our journey.

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