Wednesday, May 20, 2015

want to go home!!

Post transplant day one hundred something. Lost count. 😊 William joins Daddy and Mommy at a night out to eat, blows some bubbles and enjoys the nice weather. One day closer to getting the heck out of Pittsburgh! We are well...and bored!

Thursday, May 7, 2015

Day 105

William's infection panel came back negative. They tested him for the most common. Since there are thousands of infections and viruses, it is assumed he had something and fought it off on his own. With his central lines, they are overprotective and act aggressively when a fever arises. William's numbers are considered normal again, although with an infection and/or virus, for any of us, there are some residual affects on white blood cell counts, hemoglobin and platelets. His numbers are all OK, except for one: his hemoglobin. It is borderline, so to keep it from dropping anymore before it rises again, he will be getting a blood transfusion in a few minutes. He hasn't had any transfusions in over a month. In layman terms, this is a way to "top him off" before we head home. Once his central lines are removed, this type of low grade fever will not require hospitalization. Tentative date for line removal is May 15 after his last IVIG treatment.
We are all well. We have one more night in the hospital to cover the "48 hour" window to see if any other issues surface.
I want to go home! So ready.
The Branches

Giving up is NOT an option

When William started having symptoms, I wasn't sure if he liked me. I know that sounds trivial, but I was the one that was always around and I couldn't make his pain and hunger go away. His eyes would look at me for answers and I didn't have any. For a long time, I figured he thought I was the "bad guy" and he associated my face and voice with pain. But, we never once stopped trying. There were several nights Robert and I would just hold him and cry (all of us) because we didn't know what was wrong or what to do.
Although the timing is a bit unusual (well, heck, his whole life has been unusual), I felt an overwhelming feeling tonight as I was tucking William into his hospital bed, post transplant 104 days. We have a routine where we sing (I try to sing), we hold hands and pray for our family and friends, and then I sit him up and lay his head on my shoulder for a hug. When I laid him back down, his mouth opened and I saw a little smile. It literally started pouring out of my eyes. I haven't seen my boy smile in 5 months.
I know this is kind of a sappy story, but just let this be a reminder to never give up on the ones you love. Even if it's too hard to handle, that's when you have to dig the deepest and try the hardest to believe in them, because giving up is NOT an option.
Take care of one another.
The Branches

Video of William's Krabbe Doctor

Dr. Maria Escolar

Video of William's BMT Doctor

William's BMT Doctor Paul

Day 103

This little boy doesn't have a fever anymore. His doctors want to keep him 48 hours due to his central lines and his elevated white blood cell count. His infection blood culture hasn't come back yet, should be this evening. Whatever it was, the antibiotics are helping! His doctors also told us on their rounds this morning that this is the most alert they've seen him. He's just going to keep us on our toes, I suppose.
Thank you for all that are following William's story and the continuous prayers and positive thoughts.

Elevated WBC

William has an elevated white blood cell count which could mean infection. The blood tests that check for infections take 24 hours to come back. Because of the elevated WBC, he has to be admitted so they can watch him overnight. Going back to the unit he was in for 2+ months, I wonder if his nurses missed him. He's doing OK and Daddy Robert will be staying the night with him. He's such a trooper, this hospital is a second home to him. All he knows is change...I hope we can put a stop to that sooner than later. Keep the prayers coming that this is a quick visit and we get back on the road to going home soon.

ER Update

ER update: pretty much a routine ER visit if anyone has brought in a baby with a fever. Blood culture, IV fluids, and antibiotics. We will know his CBC culture and electrolyte count in the next hour or so, any other cultures run for infections take 24 hours for results. William is comfortable, getting his 9:00 feeding and falling asleep. Oh and his fever is lower already, before antibiotics, go figure. Just another day. Because he still has his central lines, he does not need to be stuck with an IV, all blood draws and fluids go through the lines

Day 102 - ER Visit :(

Post transplant day 102: our first ER visit post transplant. William was running a temperature and his doctors wanted us to come to the ER to get checked. He seems otherwise OK, just sleepy. His doctor called ahead and we got in a room right away due to just recently having a transplant and still having a central line. We are waiting for his doctor to come take a peek at him. Chances are they will be giving him prophylactic antibiotics. Poor baby. Say a little prayer please.

Day 100!!

Happy birthday, #65, to Papa Ron and Happy 100th Day Post-transplant for Baby William! Time to celebrate!

Post Transplant Day 97

Post-transplant day 97. We are really getting excited to head West. There is talk about having his central line removed the week of May 11, he has already started his day 100 blood testing and are now only being seen once a week as outpatient. He is getting all of his nutrition through his g-tube, although he takes some food by mouth (sweet potatoes remains a favorite.) He spends a good amount of time playing in his stander and going on walks with Papa and Gogo in his KidKart. Saturday is a big day for us here: it's Papa Ron's birthday AND William's 100th day post-transplant!
Papa Ron and Gogo Marcia will be taking off soon and coming back closer to departure date which is still 4th week of May, to help us move back.
Thank you for all of your support, as always. I'm so excited to start our new life. I hadn't even finished unpacking from the move to Utah!
Xo, The Branches