My day went nothing like I expected. It started with a call this morning from Joel's therapy office saying that his therapist is sick, so his therapy was canceled. You see, God knew how my day was going to go before I knew. At the time I thought nothing of his therapy being canceled. I just thought "great, that makes my day easier". So, right after the call I woke up Joel and took him fasting to get his blood work. The blood draw went as good as can be expected. He's such a good little boy. Only cried a little. :( My sweetheart. They took the maximum amount of blood allowed for his weight and may still need us to come back in a couple days to give more. I guess there were a lot of tests ordered. There was a huge wait when we went to the lab so I ended up missing my appointment for my Echo (heart ultrasound). I went as soon as we were done and explained what had happened and she rescheduled me for 12:30. That was exactly the time I would have been leaving to take Joel to therapy. So see, God knew and he had already arranged for me to be available.
My Echo went well. She said she didn't see any tumors (which TSC can cause if I carry it). Also, my heartbeat was fast again. The tech didn't say any more than that. Just that the doctor will give me the results in about a week.
I got a call this afternoon from Joel's pediatrician saying that they had the results from the urine culture and it was negative. I guess that just means that he doesn't have an infection. So that's good but to me that just points to his kidneys as the problem even more. I am awaiting the results of his blood work anxiously.
Isaac got home today and took us out to dinner to "give me a break". :) Isn't that sweet? It's so wonderful to have him back home with us where he belongs. The kids lit up when they saw him. They love him so much and need their daddy to be around. It looks like he may be going back to work in El Centro again next week which means he will be staying away from home again. It is about a three hour drive one way from our home. The company he works for has picked up a long term job there and he is waiting to get a call saying if he was chosen to go or not. Don't know what I will do if he has to go long term. :( At least I get to see him on the weekends. I know there are many military families who are separated for months on end and I really respect them for the price they have paid to serve and protect our country. Thank you to all our military. I am going to bed now and I don't have to sleep alone tonight! :) Thank you, Lord. Goodnight.
And just when I thought life couldn't get any crazier...meet today and tomorrow. Today I woke up calling the doctor. This thing with Joel has just gone on too long and I told them I am not comfortable waiting any longer. What prompted this? Blood in his diaper again last night. He has been having blood in most of his diapers. What happened over the last week, you ask. Last Thursday I called the doctor about his urine and the blood in the diapers. He said that he wanted to test the urine that day, so we did that. It showed moderate blood and I think some white blood cells, so they sent it out to be cultured. They told me to come back next Thursday to test it again and if it showed blood then they would order blood work. Well, we are still waiting on the results of the culture. Today the nurse practitioner said the lab had the results but they were still working on getting the lab to fax the results to them. (I hate waiting games! Especially when it comes to my baby!)
So, back to this morning. The doctor said they needed to see Joel. So after doing school with Jonny, Floor Time Therapy with one of Joel's Hope therapists, and feeding the kids lunch, we were off the doctor. Me and the whole gang. It's kinda interesting to watch peoples reaction when I walk into a room herding three little boys, some people raise their eyebrows and look away and others watch us and chuckle under their breath. One lady even commented to her son and we walked by that this is how it looked when him and his brother and sister where little. The nurse practitioner was great. She ordered a renal ultrasound. (This isn't as bad as it sounds...it just means an ultrasound of his kidneys. TSC can cause benign tumors to grow on any of his vital organs so it is important to check for this among other things.) She also order a bunch of blood work including blood sugar level, so it has to be a fasting blood draw. Because of this we are going in tomorrow morning to get it drawn.
As soon as we got home from the doctor I made brownies for my dad's birthday celebration which was tonight, got everyone ready for the party and went. Everybody had a great time and we didn't get home until 10:15pm. Way past their bed times. Shhh, don't tell Daddy. He's working in El Centro again. So, once again I am single moming it this week. The great thing this week is he should be home tomorrow night as they are finishing that job. Yeahhhhh! :) :) :) :) Bedtime went surprisingly well for it being so late and being a bath night and me having to do it all by myself. Joel gets his anti-seizure meds at night so it makes the whole bed-time routine a little harder. After they were all in bed I cleaned the entire kitchen. :) Even though I am exhausted, the kitchen is sparkling clean. :)
Tomorrow morning I start the craziness all over again. What do I have on my plate? Joel's blood work at 8:30. My heart ultrasound at 9:30. The kids breakfast and Jonny and Jason's school. Lunch. Joel's occupational therapy (40 minute drive one-way) at 1:00. Jonny's piano lesson at 2:00. (Which reminds me that he needs to practice in the morning, too.) Hopefully after all this I will get a nap (which I will desperately need) before I cook a special dinner for Isaac since he is coming home after me not seeing him since Sunday (which feels like an eternity ago). It may not sound like much to you, but add in three little boys putting kinks into my plans by getting hurt, a little fighting, insisting they get THEIR own way...you get the point. Anyways, I know I will hit the ground running in the morning and not stop until I hit my pillow at night (or hopefully that nap I am going to try for :}). If you are still with me reading at this point, I applaud you for sticking with it. :) I know this has been a long post. I thank you from the bottom of my heart for caring about us enough to keep checking back here and for those of you praying for us...God BLESS you! We definitely need all the prayer we can get! I will do my best to post an update on anything I might find out tomorrow about Joel or my heart. It will probably be evening before I get to sit down at the computer. Good night my friends, I better get some sleep before tomorrow comes!
Annie
I am concerned about Joel today. The anti-seizure medication he's been on since he was nine weeks old is hard on his kidneys and they used to do blood work about every three months to check his kidneys. I'm not clear if this was because he was on more than one medication, but the fact remains that he hasn't had his blood checked in about 13 months. I'm not sure if this is because of an oversight or because the docs didn't feel it was necessary with him just being on the one medication. Here is what I am concerned with - his urine is not normal. For about the past three months almost every diaper change in the morning has been weird. By weird I mean dark colored and kinda like syrupy. It's really hard to describe but it's kinda heavy and gel-like. Anyways, it makes his diapers feel really weird. (And I would know because I have changed three kids worth of diapers and always used the same brand.) I haven't worried about it too much because I thought it was probably because the urine sat in the diaper a long time...since it was a diaper he had worn all night. In the past week it has started happening during the day. Well, I woke up yesterday with his kidneys on my mind. When I realized it had been so long since his blood had been drawn I thought "I wonder". Last night when I took his diaper off for his bath I noticed some blood in the diaper. So today he is going in to his pediatrician to get his urine tested and I am trying to get his neurologist to write an order for blood work.
Update on my heart: I got a call this morning and they moved my Echo (heart ultrasound) up to next Wednesday. (A whole week and a half earlier :)! ) My stress test is on Monday.
