Ready for Discharge? Blood Counts are Climbing!

Todd was unhooked from his IV pole today, October 5, 2014. He gets hooked up for some medications and transfusions,but they are switching him over to pill-form of most of his medications, getting him ready for discharge this week.

On October 4, 2014, Day +18, Todd's blood counts were not only climbing, but his white blood counts and ANCs (neutrophils) more than doubled!

 On Friday, October 3, his white count was 360.  On Saturday they jumped to 970.  The goal for discharge from the hospital is 1,000.

His ANCs on Friday were pretty much non-existence and on Saturday they jumped to 890!  The goal here for discharge from the hospital is 500.  So you can see he has already cleared this hurdle! 

While his Platelets were still only between 6,000-7,000 the past three days, there was already talk of him being discharged as early as Monday!  Neither of us was prepared for this.  I started gathering unnecessary items to take out of his room and made plans to prepare the hotel room for his arrival.
 
By today, Sunday, October 5, 2014, Todd's CBC blood counts were: Hemoglobin 8.2, Whites 1,630, ANCs 1490, and Platelets at 7,000. Unfortunately, this meant once again that he had to receive platelets.  Since the transplant Todd has had a total of 11 platelet transfusions.  We were under the impression that since there was no restriction for being discharged with low platelets, that Todd could just get platelet transfusions through outpatient visits.  However, the doctor stated today during her rounds that Todd would NOT be able to get platelets daily on an outpatient basis, so he may have to stay in the Hospital longer until his body can start maintaining his platelets after infusion (or are creating them) for at least a couple of days at a time.  Now that his white counts are multiplying they can start doing their job to allow his body to start cranking up the bone marrow to make platelets.

I'm planning on talking to the doctor tomorrow about this situation.   How many more days does she estimate this is going to take?  Can she push again for the HLA matched platelets again?  (The latest on this saga: not planning on giving any HLA matched platelets at all). Can she request platelets from a single donor instead of a bag of platelets combined from multiple donors? Would this work better?

I'm a little frustrated that they got us all excited that he could be discharged tomorrow, when he may have to stay several days longer.  Why didn't she say anything about the platelets before telling us he could leave Monday afternoon? 

Well for now we are content to stay if he has to.  We are still excited that he is doing so well and that the time to leave the hospital is drawing near.  Meanwhile, I will continue my nursing training on taking care of his Hickman Central Venous Catheter and preparing for him to come to the hotel with me.  He is looking forward to good food and sleeping in a big bed.  I'm looking forward to doing things together like eating meals together and going out. 

This is "Chester" the bust caregivers can use to practice Hickman Catheter care like changing dressings, caps, and flushing the lines.

Day + 7: Blood counts hitting their low

Todd has been doing as expected with no major complications. His symptoms of nausea, diarrhea, and fatigue are expected during this time period. He has avoided the dreaded mouth sores from the chemotherapy until today. He has to perform a strict mouth care regime four times a day. 

His CBC blood counts have been slowly declining. Today, his platelets were too low and he had to receive a transfusion of platelets. This too is normal in this situation. It will not be the last transfusion he receives. Instead, he will be getting transfusions for the weeks and months to come. 

It is hard to read, but today his Hemoglobin was at 10.6. Normal for men is 14-18 gm/100. His white count is at 80 instead of a normal of 4,000-11,000 lcm. His ANCs were 0!  The normal is between 40-60. And his platelets were 8,000 instead of 150,000-400,000 per cm mm. 

Transfusions are given if: 

Platelets<10,000

Hemoglobin 8.0 or below 

Today and yesterday he spent most of his time in bed. The doctors really push exercise though, even when the patients don't feel like it. Two days ago he walked on the treadmill and exercised on the sitting eliptical machine. He also has some stretchy tension bands to work his arms and upper body with. The doctor doesn't expect a regular "workout" but they do want them to walk up and down the halls at minimum when at all possible. This helps to keep them strong and in his words move the healing process along.

I've learned from Todd that if I walk with him, to always push his IV pole for him. This way he has more freedom and it gives him the illusion that he is not attached to it. So, if you are with someone with an IV pole, offer to push it for them, unless they need it to steady themselves. 

Thanks for all the texts, cards, and phone calls. If I had to ask for anything right now it would be to please be good and kind to my family at home, especially my girls. It shocks and angers me to hear that people are not being understanding and kind to them. Even though I've tried to communicate with Administrators, coaches, teachers, and those close to them, it still doesn't sink in!  I understand that it is hard to fully comprehend how we are feeling without walking in our shoes or being in the tramatic place we all are in, but it bothers me that people can't put their own selfish and power-hungry comments and attitude aside. 

So if you want to do anything for us right now, please, please be extra kind to my girls!  They are having a difficult time with this process too. Their dad is sick in hospital, hours away, and they can't see him often. (They haven't been able to visit him yet). Their mom is also far away and can't be there for them like normal. Their grandmother Donna mom has been a tremendous help and she is doing the best she can. She could use some encouragement instead of hassles. 

I am grateful for this support!