DAY 51 - Thur, Mar 13
Charlie has his heart stress test today. This is a 3 hour test. They took pictures pre-test and post-test. Scheduled at 9:30 am, then after test he had to get an IV of magnesium and then his 1 hour saline, 1 hour Foscarnet, 1 hour saline. I dropped him off at the hospital at 9:30 and he wasn't done until 4pm. Long day for him. Heart test came back good. They also put him on new oral medicine for extra supplements of phosphate.
DAY 52 - Fri, Mar 14
Our regular scheduled appointment days are now Mon, Wed and Fri. He received the 3 hour IV, his magnesium IV (which is now aother regular Mon, Wed, Fri IV), we refilled some meds and went back home. His stomach has been hurting alot lately and his joints (especially knees) are very sore. Continued use of the prednisone will affect his joints and tear down his major muscles and it seems to be getting worse. He feels very weak. His hands tremble from the tacrolimus, which he will be on for at least a year post-transplant. The foscarnet IV makes his whole body tingle, which he does not like. There's so much he has to go through every day and to wake up knowing this. God Bless him.
DAY 53 - Sat, Mar 15
Saturday is becoming a regular day off. This is nice, as on our days off we usually have something else scheduled. Mom gave him his am and pm IV's (3 hrs for each), breakfast, lunch, dinner and betime pills, 3 glucose tests and he gave himself the two shots of insulin. This is a regular day off.
DAY 54 - Sun, Mar 16
In hospital at 10am for IV's, as they can only give us a few bags at a time. It is now 2pm and he is still at the hospital. His magnesium levels were 0.8 which is unusually low, probably due to foscarnet, so they had to give him an IV bag this morning and he'll have to get another one tonight. Also, his potassium levels are very low, due to foscarnet. Every medicine has a side effect, that requires another medicine, that has a side effect, that requires another medicine.....
DAY 55 - Mon, Mar 17
We have to go in to the hospital every day this week. All his electrolytes are low and he needs to receive additional calcium, magnesium and have all his counts checked on a daily basis.
DAY 56 - Tue, Mar 18
Went in for rounds and he ended up staying for morning IV's, platelets and lumbar puncture. Took three tries this time for lumbar puncture.
DAY 57 - Wed, Mar 19
Three patients went home this week. This is a good sign and gives us hope. Getting ready to go into hospital for rounds and blood draw. CMV levels are up to 30, apparently this is high. Met with ID doctor, Dr. Hauog (infectious disease) to evaluate. Dr. Wu changed IV med back to ganciclovir this evening, went into hospital around 7pm to give back foscarnet and pick this up.
DAY 58 - Thur, Mar 20
Met with ID team and attendant, Dr. Livitsky to discuss CMV and GVHD levels. Continuing with ganciclovir and hydration with nutrients in it.
DAY 59 - Fri, Mar 21
In for rounds, blood draw and took IV meds with us to run at home. Back in at 3:45 for eye appointment. Doctors wanted to check this area (due to location of original chloroma? tumor) to make sure everything is normal. It is.
DAY 60 - Sat, Mar 22
Back in again to check on GVHD and CMV levels. The doctors are very pro-active with their diagnoses, checking all levels and acting accordingly. We actually took a day trip later and went sightseeing and took pictures. Very nice and relaxing. Also, very late night due to evening meds.
DAY 61 - Sun, Mar 23 ***HAPPY EASTER***
Have today off, rainy day, good for sleeping - maybe. God knows we all need it. Charlie spoke to Dr. Yosh and the CMV levels have gone down to 3 from 30. This is good news. He can quit taking the hydration before and after the ganciclovir, but he will probably still need magnesium IV supplements.
DAY 62 - Mon, Mar 24
Rounds at 8:30 this morning. We have a new attending doctor. There are 4 or 5 doctors who do rotations between the VA and like 5 or six other hospitals. They are all wonderful.
DAY 62 - Tue, Mar 25
Have to go in every day this week except for Thursday. That's when mom flies home and Charlie's sister takes over for next 5 - 6 weeks. Blood port on Charlie's PICC line is almost completely blocked. Did glucose test earlier and looked like air bubbles in line. Had to use other port. Right hand started to cramp. Hospital believes it's due to low electrolytes.
DAY 63 - Wed, Mar 26
Charlie and his sister rode to hospital together. Received magnesium IV. BMTU lost a nurse due to stroke, very somber, sad day. They are like a family and the patients and caregivers are like an extended family. You develop strong bonds. The doctors, nurses and staff saved my son's life.
DAY 64 - Thur, Mar 27
Letting Charlie's sister take over. Very rough transition period. Mom stayed back at apt as she is leaving tomorrow and letting those two develop their own bond, trust and routine with each other. His glucose levels were 55 this morning. Should not have administered NPH insulin dose, but he did by accident (40 units.) Should have taken no action and should have drank 1/2 - 1 glass oj, then check again in 1 hour. Hospital rechecked for him. I've made a few mistakes along the way, but a phone call to the hospital and open communication are an important part in his treatment. Blood port is clogged, hospital taped it off until they can flush it.