DOT +107

Laura and I are loving being back at home!  We had an appointment yesterday at the clinic and all my labs were great.  My hemoglobin has made a good jump to 11.1, which is close to the highest it has been in 3 years.  All the other labs were good and I needed no other supplements.

My surgery is still recovering mostly with my stomach and having to eat small but frequent meals.  They are really trying to get me to eat good because of all the weight and nutrition I lost.  That will come with time and with the help of all the good restaurants in Greensboro!

We head back Friday for another clinic visit.  All the support has been wonderful!  Seeing people around town has been a real treat.  The amount of people that have followed this blog amazes both Laura and I, which has really helped us through all this.  The real end and a formal discharge back to Dr. Buckley is soon!

Thanks!

DOT +100...Headed HOME!!!

Today we got the final ok to head back home tomorrow and start commuting twice a week for clinic visits! It's the best news ever. Laura and I were overcome with joy when we heard this and I don't fully think it has sunk in yet.

All my labs have been doing well with one transfusion that I had Sunday that has really stuck with me. So that shows I can start to spread my clinic visits out. My WBC is still really high and holding strong.

Going back is going to be the best feeling ever! We get to see our dogs again and just enjoy the comforts of our own home! We can't wait to catch up with our friends and everyone back in Greensboro. I still have some recovering and energy building to do, but there is no better place than home for that.

We will continue to say thanks to everyone for all their support thru these past 7 months! There is no way we could have ever kept our spirits as high and fought as hard without everyone. It's hard to believe now that I have John's immune system that is healthy and has working white cells.

God is Good!

DOT +96

It's Burns again.  The last week has been one of the toughest but yet the most rewarding in my entire life.  Just out of surgery I can remember Laura telling me about how my WBC has already increased to 2.0 in that short period of time.  So that was a sure sign that the surgery was a success and we might be near the end of this journey.  Now it is in the 5.0's!

Then the pain set in.  Wow, did this thing hurt for a while.  They gave me a lot of pain meds which eventually got to be too much and they had to back off all them.  The incision was bigger than expected so the recovery time has also been a little longer and tougher.  But I am OUT of the hospital today and an moving around.  My left side has a lot fluid due to my protein being so low so eating and movement is the most important thing for me right now.

Since my WBC is so high they have given me the freedom to go wherever I want. Laura, Gracie, and I went out to lunch today and I cannot say how much fun it was!  My eyes were huge walking into the restaurant.  I have not been anywhere but the apartment and hospital in months so this was a real treat.  Then we came back to the apartment and had a nice visit with Gracie who came up from Charlotte for the day.  To keep me moving Laura and I then headed to the grocery store where I was able to grab whatever I wanted! (I hit the cake department) We got some steaks tonight and John came up for the night.  I think I am done for the day so I think he will be manning the grill....

So it seems things are closing in and there is light at the end of the tunnel.  We are not sure how long this recovery will take before we can make a trip back to greensboro but knowing that it might be soon is good enough for now.  We will go to the clinic daily to check the incision and make sure my labs are still all good.  My hemoglobin is still low and they expect that to take some time to rebound.

I got an overwhelming amount of support in texts, calls, email, and prayers.  I wish I could have responded to them all but I read every one.  THANK YOU so much for all the support!

And one last thing, Laura's post yesterday could not have been more perfect.  To see Dr. Buckley in person was a dose of medicine that I needed!

DOT +95

The doctors are pleased with the progress but he is still dealing with lots of pain.  His left side still has all of the fluid, but they say that movement and food will decrease the amount.  Today they took him off of the all liquid diet, so he has eaten some lemon pound cake from starbucks, a PB&J, and mom is bringing him a Wendy's baked potato!  Everybody is glad to see him eating again!!  This will help him regain lots of his strength, along with him getting a good night's rest.

Dr Buckley came by and surprised him with a visit yesterday!  I don't think anything else has raised his spirits more.  He was so glad to see her, and she was so encouraged with his surgery and its results.  We are so grateful for everything she has done- she has kept up with him throughout this whole process and has offered multiple pieces of advice, and even more support to us, but more importantly Burns.  They have the most special relationship- and it was made evident seeing the two of them visit together yesterday.  There is more between them than just your average doctor-patient relationship.  She has gotten him through every illness and bump in the road since he was two years old- she knows him in a special way that no one else does.  Burns is so ready to be done with this process, and have it all behind him.  He told me he wants to be back under Dr Buckley's care.  I told him that the whole point of this was to cure him of CGD and that he will no longer need to go to Dr Buckley anymore, he will just go to a regular GP.  I asked him how special will it be when he can email Dr Buckley simply to see how she is, and no longer have to describe how he feels; he smiled.

DOT +93

The doctors are still extremely pleased with all of Burns' counts!  It is amazing what kind of results you can achieve just by removing a nasty spleen!!  He is still struggling with some of the issues related to the surgery, but the doctors are not concerned.  We have all been so impressed with the doctors and nurses at the hospital.  It certainly makes it easier to leave at night knowing he is in such good care!

Thanks for your continued care and concern!

DOT +91

Burns had another good day! Each day he is able to comprehend more and more. They are making him get up and walk three or four times a day, which is still very painful, but is good to keep him mobile. His platelets went up to 144 and his white count dropped to 5.1. However, this was expected. This is considered 'normal.' His hemoglobin is still low, but the doctors say that is due to the surgery. They took off his bandage, and his wound is healing great!! He is still using his pain pump, and until he is able to come off of that and get by on oral pain meds, being discharged isn't really discussed.

Thanks for the support!

DOT +90

Today, his recovery is moving along wonderfully. The nurses 'persuaded' him to get out of bed a few times to walk around to keep his blood circulating to prevent clots and to help speed along recovery! They said he did great, but it was obviously painful for him. He is more lucid today and can carry on brief conversations, but occasionally nods off in the middle (all due to the pain meds)! His pain is more managed and he is using his pump less! The surgeon stopped by and said they would change the dressing tomorrow morning. He is still on a clear liquid diet, but he has no appetite, thank goodness, so it's not a big deal!

And I saved the best for last:
White count- 9.2
Platelets- 122
Hemoglobin- 8.5

Not sure why the hemoglobin didn't jump up yet (wasn't here when the doctor came first thing this morning), but we will take two out of three!!!!!!!

This is wonderful, wonderful, wonderful news!