Mommy here...I know I’m in the doghouse with many of you.  The truth is I did write a lengthy update last week at the hospital and then lost it trying to post it.  I am sorry that you all have not known what has been going on with Jacob.  We really are thankful for your continued love, support and prayers.  I fell off the blog wagon before the holidays and just had a really hard time getting back to it (I don’t know why, I just did. – sorry everyone.)

Well, on to the good stuff….Jacob is doing well.  We’ve definitely had our fair share of ups and downs over the last 5 or so weeks, but overall we’re in a good place and pressing on.  We are currently still driving to Cincinnati every other week for 2 consecutive days of photopheresis treatments and three other infusions.  On the off weeks when we don’t go to Cincy, we have a home health nurse come to our home and administer two infusions for JT.  He’s still getting a large weekly IV dose of steroids and takes a small oral dose every other day.  We ALL are enjoying the small reprieve from traveling and long hospital stays

Jacob was hospitalized for one night just before Christmas.  It actually was pretty scary.  Jacob and I were in Cincinnati for his regular photo treatments.  Everything was going OK until he said to me, “Mommy, my head is hurting.”  I didn’t think too much of it until he said it again.  When I looked into his eyes I could tell right away he didn’t feel real good.  The Hoxworth nurse doing the procedure told me that this was the point in the treatment when the most blood was out of his body so this can happen.  The problem was she was having trouble returning the blood to JT because his line kept occluding.  She raised his legs and he felt a little better.  That didn’t last long though, next thing he said was I don’t feel well and then he started puking everywhere.  The nurse pressed the call button and I was like, “what is going on?”  The nurse told me he was doing this because he had so much volume out of his body (this is one of the dangers of doing photopheresis on children and why it is only done at a few centers in the states).  Next thing Jacob’s blood pressure dropped extremely low and his heart rate went super high to in the high 180’s.  Another nurse finally came in and quickly assessed what was going on and next thing I knew the room was filled with doctors and nurses.  The head doctor kept asking our hoxworth nurse how much volume is out of his body right now?  She just kept saying, “We need to get volume back in him.” I was on my knees on Jacob’s bed holding his head in my hands and shaking him because he kept saying he was so tired and he just wanted to go to sleep.  I didn’t know how serious this all was at the time and frankly, when he was closing his eyes and so limp I wasn’t sure if he was going to be alright.  It was so scary.   

The problem was that Jacob’s port was not working and the nurse couldn’t get his blood back to him.   At this point the emergency was getting some sort of access so that they could get any type of fluid back into his body.   Several nurses were running around trying to set up a sterile field to start a peripheral IV site on Jacob.  When they started to hold his arm and put on the tourniquet Jacob started freaking out and repeating, “No, this can’t be right.”  It had been over a year since he last had a peripheral IV site started.  Then he started saying, “Oh no, this is all my fault, now I’m going to have to be in the hospital for Christmas.”  It was heartbreaking.  The first nurse got into a vein, but the vein blew.  The head nurse tried next (remember the amount of stress she’s feeling at this point – room filled with 10-11 nurses and doctors, not to mention she knows what happens to a child without enough volume in his body for a certain length of time).  She got right in.  They couldn’t give JT his own blood back now because it had been out of his body for too long, so they started IV fluids until a unit of blood came from the blood bank.  The blood came up shortly and then about half way through the infusion Jacob looked up and saw all the people in his room and said, “Hey all you people are freaking me out – get out of here.”  At this point I knew he was going to be fine.

The doctor asked me to step out into the hall to see if I had any questions.  We talked for some time and I found out that it could have gone really bad for Jacob had they not got the fluids back into his body when they did.  The doctor was very calm during the whole crisis but admitted to me in the hall that she was really scared too.  I was so proud of Jacob during this whole thing.  When I came back into the room he was putting the tourniquet on the nurses’ arms looking for good veins for an IV.  I’m so thankful for the incredible medical staff that takes such good care of Jacob on a regular basis.

We did get admitted to the hospital that night which was Dec. 22, for observation.  They had started IV antibiotics on Jacob just in case this presentation was also an infection.  The next morning, Dec 23, I was out in the hallway first thing talking with all the main people I needed to to ensure that we would be released that day.  Well, finally around 8:00pm Jacob was cleared to head home, although every doctor and nurse advised us not to leave due to the horrible road conditions.  Jacob and I didn’t bat an eye and headed out the door.  We wanted to get home – it was almost Christmas Eve and that’s when we celebrate with Brian’s side of the family at our house.  It was a white knuckle drive the whole entire way and what usually takes us 5 hours, took us 8 and a half.  Jacob was a real trooper and we finally pulled into our driveway around 4:30am on Christmas Eve day.

We had a wonderful Christmas, spent time with our families and just felt so grateful to all be home under one roof.  We hope you all had a great holiday and are having a happy new year.

Just last weekend Jacob got another fever, but thankfully we had just discussed with Dr. Filipovich about a new protocol for Jacob.  Brian was able to take him to the Grove City Medical Center and have him assessed.  They drew a CBC and a blood culture and then also gave him some antibiotics.  His CBC looked good and he clinically was acting fine so Jacob was able to come home and not have to stay in the hospital.  In the past a fever usually meant at least a 3 day stay in the hospital and talk of a life flight to cincy.  It’s a really hard call to make for Brian and I – we want to take it seriously when Jacob gets a fever because sepsis can present really, really fast in a child with a port, but we also want to advocate for our son so he doesn’t have to needlessly spend time in the hospital when he can be at home.  Dr. Filipovich feels the same way and so now it doesn’t always mean that Jacob will have to hospitalized when he gets a fever.  We are so thankful for that, but also thankful that if Jacob really needed it – there would be no problem to get a plane or helicopter to take him to Cincinnati.

Well, that’s about it for us.  We have about 14 inches of snow in Grove City and have hit the GCC sled riding slope just about every day.  The boys absolutely LOVE the snow and have no fear when it comes to the jump on the hill.  The bigger the better and the bigger the wipe-out at the bottom the better too.  It’s great fun to have boys, especially my boys, but then again I’m biased.