Difficult to Cope With
Monday, April 23rd, 2007 at 9:46 am · 17 views
Last week, William’s labs went well… JT reported that there was minimal crying. Nurse B. called me Tuesday afternoon to let me know that William’s hemoglobin count was 8.4 and that the transfusion was set to go on Thursday. His count was 10.3 during the previous week.
William and I got ready for our monthly visit by first stopping at White Castle to pick something up to eat. The hospital food is actually pretty tasty but it is very expensive. If I am able to get food elsewhere, then I will do that. We ordered a 4 White Castle meal with fries and a drink and 2 double cheeseburgers. Of course I asked to hold the pickles and the onions. I have not liked White Castle onions in years… there is no need to wonder why your stomach hurts after eating those burgers. Most of that stems from the onions. Anyway…
We hopped back on the bus and headed to the hospital. There was a brief wait before we were seen by Nurse B. and M. but I did not mind that much at all. During the wait, William colored in the coloring books and played with the train set.
William’s weight was 32.4 pounds and height was 38 inches. He has been pretty steady at that same height and weight for the past couple of months. I am sure that a growth spurt will come this way when I least expect it. Nurse M. only had to stick William one time for the IV. I am always thankful for one stick instead of two or three or four… which leaves William in pain and me wanting to whoop someone’s ass.
After getting settled in the infusion room, William and I watched Backyardigans and as he laid in my lap, we drifted into a well-needed nap. At about 12:30 p.m., the tranfusion was complete. Because his nap was incomplete, William took a while to shake off the crakiness feeling. Dr. T. came over to chat with us and check on the size of William’s spleen. William’s spleen has not enlarged since the chronic transfusions began last August, but unfortunately his spleen has not shrunk back down to the size it was before the crisis. I did not want to look into Dr. T.’s eyes because his eyes speak the truth so well. He was not going to say anything really that I did not know, but still I find it difficult to cope with. Dr. T. said that we would still be pushing for a splenectomy after William turns 3 in September.
Dr. T. does not want William to have chronic transfusions for more than one year as this effects the iron level and could effect his liver. When the chronic transfusions stop there is a great chance that William could have another splenic sequestration crisis. After William has a splenectomy, there will be a greater risk for infection. He will need to continue to take penicillin for the rest of his life.
I continue to do the best that I can to be strong for William, but some days, particularly the transfusion days… are difficult to cope with.
I always pray that God will watch over my children, keep them healthy and I pray for a cure to sickle cell disease.
As always, William was very energetic after the transfusion. We scheduled the next labs and transfusion for May with the receptionist. Unfortunately the next scheduled dates are when I am out of town in Vegas for my job. JT will take care of the twins and take William to his appointments.
