The Long Haul

Hello world! After Linden was discharged from the hospital, we implemented our super secret plan code named Radio Silence... or at least it probably seems that way. Reality is far less intriguing but the result has been the same. Truth be told, taking care of Linden without the assistance of nurses on call 24/7 and then adding a 3 year old with amounts of energy rivaling that of a jack russel terrier who discovered your chocolate covered espresso beans, happens to be a lot of ...FUN! Ha, you thought I was going to say work didn't you? Well it is that as well, but we have honestly just been enjoying spending time together as a family. The time to blog about Linden's amazing progress has been on the list for the last two weeks but just hasn't happened. Enough with the preface though, here is the long and short of things.

Our Host Ronald

Since Linden's discharge from the hospital we have been staying at the Ronald McDonald house. The rooms and accommodations are somewhat like those you would find at an extended stay hotel. You make your own beds, take out your own trash, clean your own floors and bathrooms, all in exchange for a price tag that can't be beat — donation — and 2 or 3 meals a day made by volunteers. These meals so far have even included Eli's BBQ (heaven on a plate) and some of the best fried chicken you have ever tasted. As if that wasn't good enough, the RMDH has a play ground with swings, play houses, little lizards crawling all over the place that we try to catch, as well as lots of kids that want to play. Then there is the DVD collection, the craft room, free daily activities and parties, visits from famous athletes and the list goes on.

One could almost be tempted to think, man it must be nice — and yes, it does help the time pass — but the reason for all the entertainment is to help parents, siblings, and patients make it through what can become a mind numbing experience. Having a child that requires isolation from the outside world for a large majority of most days can become a drudgery in a very short amount of time. Thankfully, the RMDH has largely helped to offset that.

One of the biggest relief's has come in the form of visits by friends and family who have thus far survived the grueling summer construction and traffic on the highways, as well as the drive through the ghetto surrounding the hospital. Thanks guys!

Caution Tape

Speaking of isolation, a few people have asked just how long it is that Linden needs to be isolated, and what exactly isolation entails. The critical time for Linden is really the first three months post-transplant. If she were to get sick within these first three months, it could spell trouble. The largest reason for this is that her immune system is being suppressed by the medicine the doctors are giving Linden. So say she gets they take her off the meds and hope her immune system fights off the infection while risking liver rejection, or do they give her medication to help fight the infection and cross their fingers that it will work? It depends completely on the type of infection or virus of course, but the easiest road to take is the one where the doctors don't have to make that choice — in short, don't get sick. Isolation is a way to do that by keeping Linden away from large crowds and sick people.

We actually had a little scare last week when Linden's viral markers spiked and her liver function numbers started to show signs of distress. We prayed and held our breath along with the doctors for the better part of a week while we waited to see what would happen. Thankfully to our relief, after about 5 days, her numbers were starting to come back down, and have been continuing to trend back to normal range. The scariest part of hearing anything about a virus is the recent story of a girl we met who got a virus after a liver transplant and ended up hospitalized for 5 months! No thanks, I would rather stay inside for a few months at home than in a hospital any day. In fact, if her stroller is equipped with caution tape and automated sanitizer sprayers next time you see her, don't be surprised.

Home on the Horizon

So then on to the big question, is home on the horizon? Hopefully, YES! The last piece of the puzzle that doctors are trying to work out right now is getting Linden's med levels stable. There are a few meds that require fine tuning in order to come within the tolerances they have assigned. Just how fine tuned you ask? Well for starters, one specific med has to be given within 5 minutes of a set time twice a day with no exceptions. Also, the medicine has to be taken the same exact way every time. If you gave the med with apple sauce the first time, welcome to the world of apple sauce — you will be giving it to her with that from now until kingdom come. If you gave it to her with tepid distilled water in a 72° room at 20% humidity, break out the humidistat and crank that AC baby because that's how she will need to take it FOREVER! You may notice that I'm being slightly facetious here but seriously, it's that important. The way this medicine gets absorbed into her blood stream can vary wildly depending on the factors surrounding the dose, so it has to be the same every time.

This is just one of a few different medicines that the doctors have had to fiddle with over the last weeks to get into proper range. Today we got good news that the most sensitive medication fell within the acceptable range during her last blood draw. Now we just have to hope and pray that the med level stays solid and that our primary liver doctor is sufficiently satisfied with Linden's progress when we see her again on Tuesday. If that happens, everything is looking good for us to pack up and head home sometime mid-next-week.

It's still super surreal to believe that we now have two healthy children. My mind has a difficult time adjusting from thinking when our next two-week hospital stay will be, to realizing that (hopefully) surgeries and long hospital stays will not be a part of our future. We are so incredibly thankful for Linden's miraculous healing and for all of the support and love we have received during this entire process. Thank you for your continued prayers during these next few crucial months. Talk to you all soon (in person) :)!

Jake Bennett