There are days/nights when it is all I can do to keep my composure. last night was one of those nights. Let me back up. Dr. Koenig has always transfused Alex when his hemoglobin gets below 10.5. This is higher then the "normal" transfusion rate, but Alex doesn't have the ATP (energy) to make enough red blood cells to bring up his counts. So she transfuses him before he starts feeling really awful. Hematology was brought in early this month and suggested we wait until Alex's hemoglobin is 8 before transfusing. This is extremely low. Dr. Koenig agreed to try one time and either it would be okay or we would be able to show hematology why a mito kid couldn't go that low. Alex has been below 10.5 for several days now.
So back to yesterday... Alex was a little puny all day yesterday and his heart rate was high. We weren't sure if it was because he needed blood or becasue of the fever because both can increase your heart rate. Around 4:00 his heart rate went up to the 180's and he started shaking profusely. We immediately called the doctors. At that point we decided it was time to transfuse.
Fast forward to last night...We had one of the few night nurses I really struggle with. I ask 2 things of our night nurses: be quiet and keep the lights off. It is one thing when you don't get sleep for a night or two in the hospital and then get to go home and resume normal sleep, but when you are here month after month the sleepless nights take their toll. Well Alex fell asleep at 9 and at 9:30 a pump started beeping. I am perfectly capable of troubleshooting the pumps, but I decided to see if she would come fix it. She did AN HOUR LATER!!! That was the start of a bad night. Normally, when we transfuse we have to stop Alex's TPN which causes him to drop his blood sugars so it is quite a production. I was under the impression we would avoid that last night becuase we had the second IV in his neck. Well she came in at midnight to tell me we had to stop his TPN anyway. I was not about to start checking blood sugars every 30 minutes all night long so I asked to see the doctor. We finally compromised and decided to run his TPN at a greatly reduced rate and then check blood sugars twice. We also have numerous medication right now that require the nurses to be in quite a bit. Well this nurse turned on several lights and woke both Alex and I up talking and asking questions every time. So I was/am not a happy camper. Anyone who has spent any time "living" with me knows I need my sleep or I get GRUMPY!!
So this morning, we are tired, but Alex's fever is gone and I thought we were headed for improved days. One of our favorite doctor's came flying in here before 9:00 with the news that Alex's white blood count had dropped significantly and more importantly that his Lactic Acid was 4.1!!! We are trying to run some labs but of course neither Alex's port or his IV in his neck has a blood return. So we are trying to TPA his port so we can check his labs. Other then being a little cranky he is acting fine. We think he is likely fighting something, the question is whether it is an infection in his stomach or something else.
I will update again later. Please pray for my patience today!