Todd Hospitalized: Days 5-6

Day 5 Hospitalized: Sunday, October 18, 2015
Counts: Whites: 2.0; Hemoglobin:7.8 ; Platelets: 59,000 ANCS: 1.9;
Liver: Total Bilirubin:  7.4; Alkaline Phosphastase: 218; AST: 74;ALT: 102; Indirect Bilirubin: 4.4

Fever still persists. Had a better day yesterday, because they decided to stay on top of his fever with round-the-clock Tylenol every four hours. It just takes so long to work!  I didn't come into the hospital until the afternoon, since Ellie had a lacrosse tournament that I wanted to take her to.  My sister and boyfriend went out instead that morning and my parents in the afternoon.  They were concerned, because the nurse tried to give him the large potassium tablets to swallow, which immediately made him gag and throw-up.  My dad was upset, and suggested the nurse dissolve the tablet in water first and have him swallow it instead.  This worked much better.

It became obvious that he wouldn't be out of the hospital anytime soon. This is what his doctor in Cleveland feared: a long stay and she can't consult on his care.  Todd became frustrated and nervous about his care at this point and told me he had already initiated a transfer request to the Cleveland Clinic that morning.  At first, they told him they were going to move him at 1:00 p.m.  He wanted me to call the insurance company to make sure they would cover the cost of the transfer, but I had no luck getting a hold of anyone on a Sunday.  The nurse said, that the social worker probably got it approved already or else they wouldn't have arranged it.  Obviously, we were concerned, knowing that it was something we couldn't afford out-of-pocket.

So, I knew I needed to get home and get packed, but then they rescheduled to 9:00 p.m. that night.  But by mid-afternoon that transport got cancelled too!  Apparently, no ambulance carrier service was available.  Todd said it was because everyone wanted to stay home and watch football!  I said, I should start my own ambulance transport company! So, they rescheduled his transfer to11 am on Monday morning.  We weren't very happy with this, and once again I tried to go on the Anthem BC/BS website (which is horrible!  No search button!)  to find out if we had benefits.  If he didn't have benefits, we considered having him discharged from the hospital so I could drive him up myself.  Cleveland Clinic had a bed for him, and after that day's transfer fell through, they agreed to hold the bed for him until the next day.

When I made in it, I was shocked to see how yellow he looked!  It was obvious that his bilirubin was high!  He also had bags under his eyes, near his cheekbones. The round-the-clock Tylenol they gave him the day before helped the fever, but not his liver!

We learned that all prior blood cultures and a MRSA swab that turned in before came back negative, which was really no surprise.  I didn't understand, and had been advocating for them to take an influenza swab since I first took him to the ER.  The doctors there wasn't concerned, feeling that if he had the flu, it was too late to treat, but I wanted to know if he had it or not!

Hannah Lewis came out with me to the hospital, being home from college for a few days.   His fevver was still up and down, and he didn't feel very good, but it was a football day, so that helped some!

Also, big news of the day, was that he was advised NOT TO TAKE HIS TRIAL DRUG AG-221, because his bilirubin was borderline of staying in the highest tolerable level of 7.5.  It was the first time in the 7 months he has been on the drug that he had to miss a dose.

I didn't leave the hospital until about 11:30 p.m.  And even though I tried to get to bed right away, I couldn't help but start packing, and talking with the kids.  It was extremely late when I got to bed.

Day 6 Hospitalized: Monday, October 19, 2015
Counts: Whites: 1.32; Hemoglobin: 6.8 ; Platelets: 42,000  ANCS: ?;   
Liver: Total Bilirubin:  7.3; Alkaline Phosphastase: 189; AST: 37; ALT: 66; Indirect Bilirubin:?

Monday started early, making a call to Todd's nurse, taking Ellie to school, confirming the arrangements to have the hot water heater installed, and calling the insurance company right at 8:00 a.m. when they opened to verify coverage.  The representative said that they would cover the transfer under certain circumstances like when they were moving him to an upgraded/better facility, but they usually like per-certification.  Todd's nurse called me around 8:30 a.m. and told me that the ambulance was on the way and that they were transporting him at 9:00 a.m. now.

I called the trial nurse to find out if he should take his AG-221 at 9:00 a.m. before Todd left Miami Valley.  Once, I told them his bilirubin number of 7.3, we agreed that he should likely hold off again.  Technically, he has until 3:00 p.m. every day to get his dose in.  So, I told him not to take it and check again with the staff when he got to his room at the Cleveland Clinic.

 I was dragging, but got a second wind when Abby brought me breakfast, and it was time to send Hannah Lewis back to Columbus with folded, clean laundry! Lol!  Abby helped me packed, reflecting on how she helped me pack for Cleveland last year for Todd's transplant.  After a shower, and my preferred caffeine from McDonalds, I was ready to hit the road.

We both made it up to the Cleveland Clinic with no problems:Todd by ambulance around 1:30 pm since they picked him up early at 9:00 am and I arrived about around 4:00 pm.  I was glad they were able to secure him a room on the Leukemia Floor, Room. G111-12. I immediately noticed his cheeks were rosy with fever as soon as I walked into the room and insisted that they take his temperature again. It was over 101 degrees F. All the standard tests were started: new blood cultures, CBC, and urinalysis were all drawn. I thought I would dread being back here, but I was glad they had a room for him.  It was an upsetting first day as he looked and felt so poorly still.

Todd did not end up taking his trial drug AG221 for the second time in 7 months. The did give him more potassium again today, but the nurse dissolved it in a little bit of his Canada Dry Ginger Ale, then had him drink it.  This worked well.  By the evening though, they thought it was just easier to give it to him by IV drip.

High temperatures continued to be an issue. They didn't give him a blood transfusion when he needed it, because they were concerned that they would not be able to tell if he was having a reaction to the blood (which is usually depicted by a new fever). So, they kept him ice packed, and gave him 1 tablet of Tylenol. He was feeling so poorly, I practically begged them to give him the transfusion, but the doctor wanted to continue to wait while his fever was lower (around 100) with the ice and the 1 Tylenol. He continues to have headaches with the low blood counts.  

They finally swabbed him to test for influenza.  Unfortunately, until the test comes back negative, everyone will have to take special precautions coming into the room, needing to put on plastic gowns, gloves, and face masks (except me of course!).  Not only did they want to know if the flu was a factor in Todd's illness, but it is important not to spread it to other compromised patients on the floor.  No one doing it at Miami Valley Hospital from the beginning was a huge mistake and oversight on their part.

They are NOT in favor of doing ANY KIND of BRONCHOSCOPY!  Since they can't do the biopsy because his platelets are so low, it will do no good to do the scope and try to get some liquid out, like they were going to do at Miami Valley.  It is not helpful, and does not warrant the risks of the procedure. 
 

10:00 p.m.
With his fever, and low hemoglobin, his respiration and difficulty breathing began to increase. When the STNA came in at 10:15 p.m to take his vitals, they noticed that his oxygen level had dropped from 98 to 85-88 (they don't want it lower than 92). The nurse called the doctor and they put him on oxygen. His fever dropped to 99, so they finally agreed that he needed the hemoglobin and gave him one unit of blood.

 
He slept a lot, as he was so weak. I helped him brush his teeth in bed with a spit tray.  He was seeing things, which we found out later, that the Voriconazole can cause hallucinations and visions.  He went to bed fairly early, but got up about 1:30 am to go to the bathroom.  We were able to sleep pretty well through the vitals and blood draw about 4:30 a.m. until they came back in again about 8:00 a.m. Tuesday morning.

Personal notes:
I'm sure I'm missing some things and some of the times and what happened on which day may be jumbled.  It has been nearly impossible to go back and recall the events of the last six days!  The days, treatments, fevers, and medications, have been an endless stream.  I wish I hadn't gotten so behind in blogging, but I have spent an enormous amount of time on the phone coordinating his care and checking on things between two hospitals, multiple sets of doctors, and staff.  I've been trying to communicate with the kids, parents, friends, and family, all who are concerned about Todd.  I have been trying to post short updates on his Facebook Webpage every day too.  If you are interested in getting faster updates than the blog, please go onto Facebook and search Praying for Todd Cade.  If you "like" the page, it will show up on your newsfeed.

Todd is concerned about all the extra expenses that have come up, especially the high cost of the water heater and installation.  We are hoping that the ambulance ride was covered too.  I told him not to worry, that I would start a GoFundMe page if worse came to worse, or ask for donations to the Todd Cade Care Fund at PNC Bank.  I know its hard on him being laid up in bed and worried about caring for everything.

The House has been listed with the realtor and we may have someone coming to look at it this weekend.  We are doing what we can.

I haven't got to blog about us losing our health insurance in January 2016, but basically, we were denied the 11 month extension of COBRA benefits for qualified members on disability.  We didn't know it wasn't automatic and no one told us that we were supposed to notify Todd's employer or his insurer (still don't understand which) within 60 days of being notified of his Social Security Disability Eligibility Date, which would have been last year, right after he got out of the hospital from the transplant.  Everyone involved from his employer to the COBRA administrator swears that their hands are tied and that they have no control over the extension.  Didn't get a clear answer who denied the claim, but I guess it doesn't matter.  All the begging or pleading has not helped us.  Even the Department of Labor was no help.  It looks like we will be one of those families forced onto Obama Care/Affordable Care Act, that is really not affordable!  I can't imagine paying any kind of percentage of expenses.  I pray we can avoid bankruptcy if we have to pay 10%, 20% or more of Todd's health care costs.

At this stage, we can only take one day at a time! I only write about this COBRA thing to warn anyone else who is on COBRA benefits and who may also need the 11 month extension.  If you are awarded Social Security Disability, please be sure to notify your previous employer, the insurance provider, and anyone else you can think to notify within 60 days after your award date!    I wish someone would have told us.  If we could have been awarded the extension, it would have taken Todd to the eligibility date for Medicare at the 2 year mark from the SSD award date.  I wish we had someone had told us!

We appreciate your concern and support and covet your prayers.