I know that my last two blogs have been really long.....Brian always tells people, when we approach a "story," you want my version or hers? Insinuating mine is always much longer, but includes every detail.......... Maybe its a female thing, maybe we are just more detail oriented then men. With that said, I always take Jacob to the doctor, for fear of missing a detail, or Brian not asking the questions that I want, or just merely releasing that control...........I think that I am being taught that, once again things are out of my control.
I mentioned in the last blog that I feel that Brian and I are at a cross roads in our family....so many questions waiting for answers and when some are answered it creates more questions........Something that is going on right now is Jacob's health! He was doing so well up to a couple of months ago. He had played two seasons of football and been able to be such a normal little kid. No one ever knew he was receiving immune therapy every month (and thank goodness for that, he didn't even have a cold for two years). He usually had a down day each month after his therapy because of severe headaches, but he bounced back instantaneously and was normal once again! So a couple of months ago, when we felt we were thrown head first back into health problems, it took us a few days to focus. My initial response is always a feeling of panic, not of "how are we going to do this again," but more "have I been missing signs that I could have prevented it from getting worse." This in turn causes anxiety! Praying for wisdom and God's direction should be the first place I go, but I have to be honest and say I usually panic first, break down....and then realize...wait "God's hand is healing and God's hand is in everything." This is not something that I feel at peace about all the time, but something that I have to fervently pray about and remind myself. On the hard days, I have to repeat it continuously. This is out of my control!
The last couple of days have been particularly hard.......
Friday, Jacob's kidney Dr called to discuss the full biopsy report. I was so excited that we finally had some answers. He began by telling us the inflammation in his kidneys is much more minimal then initially thought (Praise God). He had IgA deposits and scarring, which were something we had already expected. He did indicate that from his first acute renal failure episode, he had significant scarring, but thinks he can even minimize that. We discussed medications and a game plan. Medications - Fish Oil....and not a normal supplement dose. 100x the normal supplement dose. He warned us that his skin could begin to smell and have other issues related with taking some much fish oil. I was relieve to find out that fish oil to that magnitude is available by prescription for two reasons....1) he would have to take 10 "horse" pills every morning along with his other meds, but instead only has to take one....2) if he had to take the supplement he would get mercury poisoning because over the counter supplements of fish oil are not regulated by the FDA and they contain high levels of mercury. (An added bonus we get a 30 day supply for $2.00 instead of $30!) Second medication - blood pressure meds. This took me off guard a bit, as through everything he has been through his blood pressure has NEVER been an issue. The doctor indicated that the side effect of this particular medication would reduce his protein output, and in turn the vicious cycle would come to an end and the fish oil could do its work. However, he did warn that it could go in the opposite direction causing more damage. Just mentioning blood pressure medication gave me an uneasy feeling. I don't know why! But the doctor said he has several patients on this protocol and it has shown to improve kidney function and reduce scarring! He told us that he needs to see results in 3 months or he will have no option but to put him back on steroids and immunosuppressants. So thats where we left it. I immediately hung up the phone and told Brian what the doctor had just discussed with me. This time Brian was the one with all of the questions..........
Saturday - Jacob starts his new medications with no problems. He is dying to be able to do regular things again, but his two weeks isn't up till next weekend. So he mozzies around, while getting in trouble for carrying a scrap piece of wood across the yard because him and Makayla are building a fort. He isn't supposed to push or pull anything...or pick anything up over 2 pounds. Needless to say Brian was not a happy camper when he found him carrying about 30lbs across the yard. Jacob spent the rest of the day inside.....staring out, wanting to go play with his friends next door. Luckily we have amazing neighbors and they noticed Jacob was not outside playing with the rest of the kids, so they sent their son over to hang out with Jacob and watch movies.
Sunday - once again no issues. We spent with day with my husband's brother and his family. They recently moved within an hour of us, which is the first time in 10 years. The kids played and we even let them swim....the water was still freezing to me, so I didn't get in. It was a great visit and nice to relax!!!
Monday - Jacob and Makayla went to school as normal, but around 12:30, I receive a call from the school nurse. His blood pressure was 82/60...low. He had a headache and only wanted to sleep. I called the doctor's office. They were not overly concerned because they said it takes a few days to build up in the system and get use to the side effects. They also said to start giving it to him at night. So the plan was to start giving the blood pressure meds at night, starting with Tuesday night. He rested without getting out of bed all day Monday.
Tuesday - Off to school. My phone rings at 9:30 a.m., the school nurse. She had to get him out of class, while disoriented and confused. This time his blood pressure was 80/59........So my panic that started yesterday and was put to rest a bit came back with a vengeance. He had not had any blood pressure medication in over 24 hours. I called the dr office, in a panic and am able to talk to the nurse right away. She gave strict instructions for him to lay down in bed, stay hydrated and stop taking the blood pressure meds. A few minutes later the doctor had called back and wanted to do some labs to check his kidney function. He told me he was concerned that this medication was doing the opposite effect and his kidneys was not releasing the medication properly, therefore, it was building in his system, but not leaving! After sitting at the school till a little after 10, for him to understand what was going on, and talking to the dr, we go straight to the lab. He spent the rest of the day in bed, soaking up me waiting on him!!! But each time he gets up his blood pressure dips really low! The doctor is supposed to call us with further instructions, once the lab work from today comes back. (praying for tomorrow!!!)
My panic and anxiety today have been the highest, since I can't remember when! I probably need the blood pressure meds about right now! I'm trying to avoid the "fog" that I talked about in my first blog, as I feel it creeping up on me. I don't want to be in sometime of brain fog....I want to be in the here and now. I am curious how other people are doing, how their days are......but when the "fog" takes over, I am in survival mode. Its about control, which once again is something that I struggle with. But without giving this "control" over to Jesus, the anxiety and panic will continue to rise.
Well, I think that's it, in a nut shell!!! (lol) An update, and box of "whine" all in one fell swoop! I ask that you continue to pray for Jacob, that God's will be done in his life. I also ask that you pray for our family. I know we still have unknown turns in the road ahead and ask that Jesus be our guide in which direction he wants us to go.
Thanks and goodnight!!!
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