Catching Up

Logan is currently going to his hematologist twice a week and has an additional appointment with an ophthalmologist on Wednesday afternoon to check on some vision problems he is having.  At his last clinic appointment on Monday his blood work showed a significant jump in white blood cells that had is doctors concerned.  They did some blood cultures to look for a possible infection that is being masked by his other drugs.  So far no word if anything has grown out of the cultures but they give it a full 48 hours before determining if they have any growth.  He is still fighting the BK virus however the bleeding in his bladder is significantly improved.  He is still lugging around a giant bag of fluids to keep him super hydrated however the doctors are allowing him a break from the fluids overnight.  

Logan is happy to be home and starting back up with his school work.  He has taken a full two months off from school during his transplant and has a lot of catching up to do.  

It seems like time moves faster here at home than in the hospital.  I can't believe it's been more than a week since I updated the blog.  Just know that no news is good news and I will do my best to update when I can.  He still has a long way to go, but we are definitely on the road to recovery.  

Persuasive Young Man

We are back home again.  They released Logan from the hospital this evening after his persuasive discussion with the doctors as to why he would be better off at home rather than in the hospital.  They wanted to keep him for observation and IV hydration while they waited for some test results to come back.  Logan was worried about a neighbor we had at the hospital that had the flu and was willing to volunteer his parents to drive him to the clinic tomorrow and Wednesday for necessary blood work and check up.  The doctors, while not happy with the arrangement, could not deny my child his greatest wish...  to sleep in his own bed.  Logan has agreed to 24 hour IV fluids here at home so he will stay well hydrated while his body fights a virus causing some bleeding in his bladder.  They believe that the bleeding is from the BK virus that was laying dormant in his body and flared up when his immune system was weakened with the transplant.  Since he is on immunosuppressant drugs the doctors will watch him closely to make sure he doesn't experience any further complications from the virus.      

Therefore, Logan will be lugging around a backpack loaded down with two IV pumps and a few pounds of fluid as part of his agreement with the doctors today.  His rash responded well to the IV steroids and they have added a topical steroid cream to keep the GVHD in check.  Even better news, his body is making lots of red blood cells, white blood cells, and platelets!  Hgb was 11.9 this morning, ANC is over 5,000 and best of all, platelets jumped from 56 yesterday to 67 today even with all the bleeding!  No transfusions needed!!!!  

At Least Overnight

Logan will be in the hospital at least overnight.  He is getting IV steroids to calm his skin rash.  They believe this rash is caused by graft-versus-host disease.  They are calling it a stage 3 immune response (out of 4) because the rash covers 80% of his body.

They have drawn labs to see if he is low on blood or platlets.  We should get those results soon.

Call before you visit...

Diane and Logan are headed back to the hospital.  Hopefully for a quick visit to get some skin issues checked out.

FREEDOM!

WE ARE HOME!

Logan was released from the hospital this afternoon.  He had a few last minute complications come up so we thought it wasn't going to happen after all but the doctors felt like we could handle this new development at home and sent us on our way about 3pm today.

When we got home I video taped the dogs reuniting with Logan.   So cute! 

Now that he is home Eric and I will have to administer Logan's meds including two iv medicines.  Home Health met us at the house this evening with supplies and equipment and showed us how to hook him up.  

 Since he will be hooked up for 12 hours each day they gave him this nifty backpack to carry the medicine and pumps.

His only request was for a cookie cake and Irish beer bread.  While he is not back up to eating what he was before, he did eat a little of both today.  The best part is that he got to eat it at home.

Not Missing the Pole

Logan is getting closer and closer to being discharged.  Today they unhooked him from his IV pole and he enjoyed the freedom of walking and rolling wherever he liked without dragging the giant IV pole with him.  We played ball in the halls, did some wheel chair racing, and played a game of tag.  

He will still need to be hooked up to IV nutrition at night as he is still not really eating, but they are giving him 12 hours off right now.  All the meds that they are able have been switched from IV to pill.  They will need to draw a few more labs to determine if he is on the right dosing before sending us home so dismissal date is still up in the air... but soon for sure!  Could be as early as Friday or maybe early next week.

In other happy news, Logan's hemoglobin and platelets are on the rise.  They were thinking that he would need another transfusion today, but nope.  Things are heading in the right direction.  

Weaning Off IV Meds

Today they are starting to wean Logan off of IV meds.  Tonight at 6 pm they will take down his tacrolimus (anti-rejection drug) and start him on the oral version.  They are switching his pain drip to a pain patch at some point today too... just not sure when.  Tomorrow they will start stepping down on the ativan that they have been using to control his nausea.  There may still be a few things that Eric and I will have to hook him up to at home, but nothing continuous.  

He is still sleeping a lot, but yesterday he started eating and was able to keep everything down.  His cheerfulness comes and goes, but I think getting out of the hospital will improve his psyche considerably.

At this time I can't predict a day for our dismissal.  It could be next week... but also, maybe, the end of this week.  If you plan to make a trip to the hospital to visit Logan make sure you call or text Eric or me first to make sure we are still here.  I will also do my best to update the blog when we have a firm dismissal day.

Turning Point?

I am hoping that today was a turning point for Logan. He has been feeling good, pain is under control, and he has started eating. His blood work shows that his kidneys and liver is continuing to improve. He seems to be making his own blood. Hopefully soon we will see an improvement with hemoglobin and platelet count. Tomorrow Eric and I hope to talk to the doctors about getting a plan for dismissal. There are still quite a few things that need to happen before Logan can go home, but we are moving in the right direction.

Angry Kidneys

The test results from the second sonogram showed that Logan's liver is not getting worse.  They makes them optimistic that his VOD is not getting worse and soon he should be getting better.  However, because they are loading him up on diuretics his kidneys have become angry.  They are walking a fine line between drawing off extra the fluid and making his kidneys not have to work so hard. They are currently doing two blood draws a day to test his kidney function and adjusting medications as needed.  

Busy Morning

Logan has had a very busy morning with another ultra sound, multiple x-rays, and doctor visits.  He is also getting platelets soon.  His belly pain from the swollen liver is much better, however he has been complaining of back pain for a number of days and they decided to do some x-rays to figure out what the issue is.  I imagine it will be a few more hours before we hear back from the doctors on the results of this morning's tests and I hope we can get a game plan together on where to go from here when we talk to the doctors again.

Liver Problems

We have had a monkey wrench thrown into our grand plans of breezing through this transplant.  Logan's liver has developed Veno-Occlusive Disease (VOD).  The short version is that his liver is becoming clogged and blood is not flowing properly.  As a result, fluid is leaking into his body cavity.  His belly is swollen and distended and his liver is causing him pain.   They are putting him on multiple diuretics for now with the hope of pulling the fluid back into his veins so he can pee it out.  The doctors will reassess tomorrow to see if this is effective.  Regardless, Logan will not be dismissed from the hospital anytime soon.  : ( 

Same Old, Same Old

I feel like there is not much to report... same old same old... but I guess that's news too so here ya go.  They are still stair stepping down his pain meds.  Even though he had no pain they don't want to take him off of it too quickly otherwise he may experience withdrawal symptoms.  

They have also been stepping down on his IV nutrition as Logan has been eating and drinking on his own.  The drinking he is doing very well with.  Food still doesn't taste quite right, but he is trying to take a few bites everyday to get this system reaquainted with food.  He wanted Lamar's Donuts for lunch and with a store just over a mile away his wish was granted!  He is now enjoying a nibble of donut here and there while watching movies.  

He hasn't had any vomiting for days and nose bleeds are very minimal now.  The only wrench in his machine right now is platelets.  He has had several transfusions including another one yesterday.  While he didn't show symptoms of a reaction during the transfusion, this morning his platelets were back down as if he didn't have a transfusion at all yesterday.  They are worried that his new immune system is attacking the donated platelets.  Since they wanted to bump his platelets up again today they super filtered the batch pulling out all of the plasma with the hopes of preventing an immune response.  So far so good... they will do another CBC in a few minuets to see if he got a boost.  If his platelets are still low that will tell them that his body is killing off all the donated platelets.  If that happens they will need to send the platelets out to be washed before the next transfusion.  

Logan is also transitioning to pills rather than IV meds when possible and they are (quietly, so as not to get his hopes up) talking about discharging him soon.  Maybe as early as Tuesday! (but don't tell Logan... just in case something comes up).

Better... And Not

Logan is continuing to improve;  Getting up and walking more; Sleeping less; Drinking more; Using less pain meds.  Then this morning during yet another platelet transfusion he had another reaction.  They already give him multiple medicines as a preventative since he has a history of platelet reactions but it wasn't enough to prevent this reaction.  The reaction was the same as before...  rash, hives, difficulty breathing.  They really really don't like patents to have difficulty breathing here.  People jump into action when you say "I feel like I can't breathe".  He is okay now, but in the future they are going to super filter his platelets in hope of preventing another reaction and add on more pre-meds just in case he reacts again.  So better... and not.

A Better Day

Logan woke today feeling better.  His body is continuing to heal and he is pushing the pain med button less and less.  He even felt like visiting with the therapy dog, Hunter.  They were so comfortable that they put each other to sleep!

Logan also felt like working with the occupational therapist today.  They wheeled around the halls and talked video games for quite awhile.  The therapist was very happy with Logan's effort today.  Logan has been feeling so bad lately that the therapist kept being turned away when he would show up to work with Logan.  

The test results from yesterday's platelets were inconclusive.  They don't know if Logan really had a delayed reaction to the platelet transfusion.  I don't believe he did because his oxygen saturation continues to be lower than usual.  I think the change is because of this engraftment. 

We have very modest goals right now.  Today his goal was to drink fluids like water, Gatorade and a yummy Sonic slushy.  Tomorrow he will try to eat a little food.  His stomach is still rather unsettled and he could not keep down the one pill he managed to swallow but tomorrow is another day towards healing and we will try try again.

Since he did some wheel chair exercise today, we will also try some walking exercise tomorrow.  He has had a bad case of vertigo for the past two weeks and walking has become a challenge so a stroll down the halls takes some persuading and a little bribery .