The Night Before

Tomorrow, March 17, 2014, Jacob goes in for his Fontan procedure. This is the final of the big three surgeries.
As you know, I can get quite anxious before a procedure, even a minor one and this is how I deal with it - venting to anyone who will lend an ear. All day today I gave him extra hugs and tickles. I kept focusing on two lines of thought; how will he be after the surgery and could this be our last day together. I know that he is in the best care around, but I just can't shake these feelings. My wife and I have been feeling a bit of friction and the cause is this anxiety before the operation.
Tonight when we put down the twins, all five of us were in the room together. I couldn't help thinking that this is the last time all of us are going to be together for quite some time.
Time to go to bed -its'a big day for me too.

Here we go again

I can't believe that it's been so long since I last wrote on this blog. Things have just been so normal with the family. There really hasn't been a lot to write about. That's about to change. Jacob has been scheduled for his next surgery,  the Fontan.  On March 14 he will be under the knife once more.
Jacob has really turned the corner with his walking and his speech.  He does not scoot anymore and is starting to develop a run - especially when he is being naughty and knows it. He is a wise ass like his dad.
I have a feeling that this surgery is going to be the roughest of the three surgeries. Not so much as for its risk and complexity but for the potential effects that it will have on the family as a whole. Since he is no longer a baby and is quite aware of what goes on around him, the separation from mom and dad and the physical pain of the surgery are going to be hell for Jake.
Jacob and I have a special bond, one that I have noticed getting stronger in the past few months. He is a daddy's boy. The two of us love rough-housing and getting into tickle fights. He has a laugh that is just infectious. His giggle makes you want to giggle along with him. I am afraid that I will lose all of that, even if just temporarily. I know that this surgery is needed and there really is no avoiding it, but I am getting scared. What will happen to my little man?

Good news from the doctors

Jacob's catheter procedure went extremely well. In a previous post, there was a catheter procedure that failed to open his right pulmonary artery. This time Dr. Vincent was able to stent it. The right PA was stenotic. It was only 2.2mm wide. This put the success of the Fontan surgery at risk. If the right PA was to be stenotic, only the left PA would be used in the Fontan. The stent opened the right PA to 6mm. Now both arteries can be used in the Fontan and there will be no more mixing of oxygenated blood and venous blood. This was fantastic news - but it came with a down side as well. Since the stent is new, there is a risk of clotting. Therefore Jacob was prescribed Lovenox again. You may remember that this is the drug that the nurse overdosed him back in late 2011. It is an injection-only drug for thinning blood. This time there is no nurse to get the dosage wrong - only mom and dad. I was squeamish at the thought of sticking my son with a sharp object. I dodged that bullet last time. I was not so lucky this time. After 10 days of giving injections, we all have gotten used to it. It ain't so bad, really.

Bribery works well with Jake 

Today I took him to his cardiologist in Mineola - more good news. She took him off of the Enalipril. His heart is nice and strong and his blood oxygen level is higher. Things are looking up for little Jake.

Steppin' Out

It has been over six months since I have written to this blog. To be honest, I have forgotten about it. This was an avenue for me to vent to no one specific about the issues my family faces with Jacob and his condition. Last October, Superstorm Sandy devastated the coastline of the region and we were just some of her countless victims. Jacob's issues took a back seat to and greatly complicated our problems of relocating and rebuilding. Since my last post we have moved back in to our home in Wantagh, however, the work is still not completed.
Through all of the problems we have encountered, Jacob has shown to be very resilient. He has taken to his therapy like a fish to water no matter where he gets it. The worst had to be in the hotel lobby where we stayed for three months. The best was two days ago - at home...Jacob took his first steps! His therapist, Rob, got him to go after a flag they were playing with and he walked three steps unassisted. This may not seem like much, but it means the world to me.
Jacob has become a little imp, just like his siblings. He knows when he is doing something wrong and makes a point out of getting daddy to chase him while he scoots away with my glasses or iPad. This is another reason why I have not posted lately. He is just 'normal' now. Anything that happens is not out of the ordinary or shocking (except the walking thing). This is who he is. He is just another one of my children. He gets treated just like the other two kids. I don't know if you understand where I am going here but this is how I feel.

If everything is normal, then what is getting you to make a new post? Glad you asked!
Christina brought Jacob in for pre-surgical screening today and everything went well. On Monday he is getting an angiogram to determine if he is a candidate for the final heart surgery, the Fontan. Daddy is getting jumpy - hence the new post. An angiogram is a 'nothing' procedure. I even had one in February. Unfortunately, his last catheter procedure gave him a stroke. I am not looking forward to Monday. We have come so far with him, I don't want to lose that.

Oh...I almost forgot - great news about his G-tube

His G-tube has been removed! With all thats been going on in our lives, I guess even something this significant can be overlooked. Last Friday during a visit with his GI doctor, she recommended that the port be removed. I didn't know that that meant right then and there. Christina was asked to leave the room when it was done ( I was with Corinne in the waiting room). After a few minutes he was done. No anesthesia, just a good hard yank and it was out. We were told that there could be a little blood and some oozing. Sunday night I ran to the local ER because it looked like a frikkin gunshot wound! The neat little hole was oozing blood and stomach acid and soaking his dressing. It was the sixth time I changed the wound dressing when it looked like something out of Saving Private Ryan and said "screw it" and went to the hospital. After being admitted quite rapidly at St. Joseph's in Bethpage I was told that there was nothing to worry about - it was quite normal. Jeez, if thats normal I'd hate to see abnormal. Anyhow, now that it has been closing on its own, it is looking better and better. I am just using light gauze at the moment and there is no more oozing of acid or blood. One more chapter in his life is ended. Time to write a new chapter.

Six Weeks in Exile

It has been more than six weeks since we were banished from our home because of Hurricane Sandy. We have adapted to living in a hotel room - although it is far from ideal. Jacob does not seem to mind the change anymore. In the month since my last post we have arranged for Jacob's therapies to be given at the hotel. He has been fitted for and received leg orthotics. He is now getting used to moving around with the new orthotics. He is trying his hardest to stand on his own. I will just put him on the floor and let him explore. He is quite inspiring to watch. He does not let his handicap stop him from getting into trouble either. He and his sister will go into the kitchenette when no one is looking and start digging through the cabinets, ripping up the paper towels, trashing the napkins and other loose items.
We recently visited the school where he will be sent to when he becomes two. The Little Village School in Seaford appears to be ideal for his condition. He will start going for a couple of hours a day and will get much needed social interaction.
Things remain up in the air as far as returning to the house. Work is progressing slowly and there is a problem with contaminated soil under the house that has to be removed at much expense. The estimated move date has been pushed to about New Year. Christmas is going to be "different" to say the least.

Difficult Times-Difficult Child

Jacob is very used to his routine. Three times a week, he expects his therapists. He plays downstairs with his siblings every day. Breakfast, lunch and dinner are pretty much at the same times daily and bath time and bed time follow. This year a were greeted by a very nasty surprise. Hurricane Sandy swept up the East Coast and blasted the Northeast. A 14 foot storm surge deluged my neighborhood destroying the ground floor of my home and Jacob's little world. Today is Tuesday, November 13, 2012. It has been 2 weeks since Sandy hit. Jacob has not seen his doctors nor had his therapies since then. We have been displaced from our flooded home and have been nomads for a fortnight. We first rode out the storm in my mother's house away from any rising flood waters. After returning to the disaster area that is my home we relocated to emergency shelter in a rundown flop house. We were a family of five in a tiny room with no electricity or heat. We were saved after a week of this by a close friend. After rooming with her for three days, we got a room at a national extended stay hotel. It's even got that 'lectricity! However, we are still 5 people in a hotel room. Really cozy. This has been a difficult time for all of us, especially Jacob. He has been torn from familiar routine and cast into chaos with the rest of us. Out of the 5 of us, he is the most stressed. He will sit and cry for hours on end because this is not his home. This is going to be a trying time for this family. I just hope we will still be in one piece after this is all over.