Day +10, +11, +12 and +13

 First, I want to apologize for the lack of updates.  I don't mean to worry anyone.  I am tired...mentally, physically and emotionally.  Sometimes at the end of the day I just don't have the energy to recount the day's events.  We are all still good...just tired.  Nate's been in the hospital for 3 weeks now and we are all just more than ready to go home and all be together.

This week has been good...and frustrating.  Nate started off the week in the OR to have his broviac (central line) removed and replaced.  Our favorite surgeon (Nate's only surgeon here at PCH) removed the month old broviac and placed a new one in the same spot that his original one was located.  He did this to minimize the number of scars he has, which we appreciate, not to mention that we far prefer it's location in the middle of his chest to when it was off to the side.

Nate has been getting better and stronger every day.  His ANC has been skyrocketing, day 10: 3162, day 11: 8127...stopped G-CSF shots (to increase WBC)...day 12: 10,920, day 13: 8512.  Basically, this means that his cells are fully engrafted and his immune system is starting to work and heal his little body.  The only problem is that he keeps getting fevers.  Normally, the fevers stop when engraftment occurs.  This hasn't happened for Nate.  Nate engrafted a few days earlier than most kids (we knew he had super cells!), so one possibility is that his engraftment occurred early but the benign fevers are hanging around the "normal" amount of time.  The other possibility is that he has some infection hiding somewhere that is not showing up in cultures or being treated by the multitude of antibiotics he is on.  While we hope and pray that the fevers are due to the first possibility, we have to assume that they are actually due to the second possibility.  We can't take any chances, because if there is a hiding infection somewhere, it could literally kill him if left untreated.  So, this week has been full of antibiotic changes and additions and cultures and tests too look for and treat any possible infection.  If his fevers continue (his last one was at 6am this morning), they will do a head to toe CT scan this weekend to rule out anything hiding.  I'm really praying that we have seen the last of these fevers.

Other than that, Nate is doing spectacular.  He has some energy back and is willing to get up and play a little.  We played baseball this morning, he rearranged his floor, alphabet puzzle a bit and we looked out the window with binoculars.  He tires out pretty quickly and is sleeping it off now, but it's so nice to see him actually want to get up and play, even if he is wobbly.  Man, we had SUCH a rough December and January.  I was so fearful that we were headed right back there after this transplant.  I am so grateful to already see him so far ahead of where he was then.  He is not eating yet, but is drinking a decent amount of water.  He keeps asking for food, but everything tastes "yucky" to him because the mucositis destroyed his taste buds.  We keep telling him that his "tasters" are broken but they will heal up soon.  He is still getting nutrition by IV (TPN) and will probably go home on TPN and IV fluids for a while, until his "tasters" and stomach heal and until his kidneys are more out of the woods and he can get by with more normal (drinkable) amount of fluids...his fluid requirement right now is over 40 ounces a day.  Really, the fever is the only thing keeping him here.  As soon as that stops, they can start taking away antibiotics and we can go home.  We had hoped for Sunday or Monday...but, that doesn't really seem feasible now.  We will just have to wait and see when these fevers stop.  I'm still hoping for next week.

I'm going to get to work on the house this weekend.  Nate now has the same immune system as a newborn baby (all his immunizations have even been wiped out).  We have to make sure that everything is exceptionally clean for him, he has a special diet (including no restaurant food), and he can not be around big crowds for several months (about day +100), especially with the coughs and colds that are going around right now.  We would love, love, love play dates and visitors as we are home bound for the next couple months.  Please just be careful and don't come over if you think you or your children may have a scratchy throat or a sniffly nose.  Also, flu shots are a must until flu season is over (sometime in April or May)...and you can still get one if you didn't and would like to.

Getting the house prepared is no small feat, considering I'm not there to do anything.  Thank God for all our helpers!  Papa was there this morning to let the carpet and upholstery cleaners in.  My mom will pick up the dogs from the groomers for me tomorrow and will keep them at her house until we can get the dog doors installed.  The sweet lady that has been cleaning our house every couple weeks, changed her schedule around to come do a deep clean on Saturday, in case Nate can come home on Sunday or Monday.  I will work on more clutter over the weekend, take down and wash the drapes, replace the shower curtains, wash the front room couch cover and see what I can do about our moldy washing machine gasket (I hate our front loading washer)...the internet suggests bleach and a toothbrush, but I'm open to suggestions.  Whatever it takes!  We want our boy home.