Hello - I hope you all had a happy Easter! We did. The easter bunny came and hid eggs and brought baskets. Julia was especially pleased that the Easter Bunny brought her a "my little pony". We all went to church. Julia had a new dress and Nathan had a new tie and they looked very nice (I'll post some pictures soon). Unfortunately, on Thursday, Nathan cut Julia's hair. It looked awful. The biggest problem is he cut a big chunk of bangs off right in the middle of her forehead. I managed to disguise the problem for a few hours for Easter with some hairspray. Needless to say I was really angry at both of them on Thursday!
They both enjoyed Sunday school and I enjoyed the music we sang for Easter. We came home for a while and then went to spend the rest of the afternoon and evening at a friend's house. We watched some basketball and hid eggs outside for the kids to find and then had dinner. All in all - avery happy Easter.
I find myself in a not-so-happy mood today. I am increasing frustrated and angry with all the doctors involved. A good part of the frustration is coming from within, but I am upset at the way things have transpired. First off - it is unacceptable that it took 3 days to get an MRI result. Then - a bone marrow cannot be scheduled until Tuesday. I find out it is tenetively set for 12:30. I ask for a final confirmation and am promised a call back and never get one. I am mad that the procedure is at 12:30 and I know why it is. The intensivist who works in the PICU doesn't like morning procedures. He pitched a fit the first time we were there even though he wasn't the doctor doing it. He says it is too busy a time. He complained right there in front of all of us. He obviously doesn't care that a 4 year old will have to go without food for 18 hours - he only cares what is convenient for him. I finally got the confirmation that the time is 12:30 so I ask about the food restriction and she tells me 8 hours. I had to then say - isn't it only 4 hours of clear liquids? She goes back and says yes. So Nathan can have juice and jello and broth tomorrow morning. If I hadn't asked her or known better he would have had NOTHING at all for 18 hours. I called Thrusday and left a message that couldn't Nathan have all his scans this week since he was due for them all anyway? I call back on Friday and get the message that no - they don't want to do that. OK - fine - but it doesn't make sense to me. Why not have all the scans to have the big picture. Every test we have - they seems to then need yet another one to really know what is going on. We know he has to have these other tests anyway - so why not do them? This is week 3 of this saga and I don't think anyone understand the extreme amount of stress this is put on Luke and I. I am at the breaking point and I cannot take another week of it should they decide to do scans next week instead of this week. Hopefully his bone marrow will be negative and we can just do the rest of the scans in May. If his bone marrow is positive - they will want to do these other scans right away and we will be waiting to see how bad it is, instead of already having had the MIBG scan and already knowing.
So - as you can tell I could go on and on about this. I hope I can get over some of this anger soon.
Who knows when we will get results back on the bone marrows. I won't even begin to guess and I suppose I won't even believe them if they tell us when to expect them. We will let you know when we hear something and I can continue to practice my hobby of calling the clinic and asking for answers every day and making the staff dislike me more and more every day.
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