This is a chronicle our everyday life as we live, laugh and love raising our teenager, our toddler and our special needs baby. Normal isn't always what it seems...

Monday, February 14, 2011

Enough Already!

The title pretty much says it. Ive had enough of this already! But, Gods timing and HIS plan obviously is different at this point than we wish it was so we will continue to trust him and move forward. We saw the Nephrologist/Hypertension doc on Thursday. We arrived there about 2:20 and didnt leave until after 5:00 p.m. By the time we walked out, Lydon was exhausted and I was frazzled! Of course we spent a lot of time on Ly's history and physical exam. I think I lost count of how many blood pressures we took. Dr. S said that he was very concerned about Lydons blood pressure. He said that looking at it over the last 6 months it has slowly trended higher and higher. He is also concerned about what the underlying cause is for the high bp. In children, it is most commonly caused by some type of kidney issue either a constriction within the renal vessels or possibly a kidney disease. Second most common is the heart. The wall of Lydon's heart could have become thickened from the stress that his little body has been under. He told me that in theory, either could be the cause for Lydons issue but he was a little bit more concerned about the kidney aspect of it all because Lydon has had a high aldosterone level in the past. Aldosterone is a hormone that is involved in the absorption of sodium and secretion of potassium. It increases blood volume and can thus increase blood pressure. So we now have to do an echocardiogram, bloodwork and scans and xrays of his kidneys. I tried to get all of that scheduled for next week sometime and was told that it could only be done in the afternoon and that he had to be NPO(without anything by mouth/tube) for 6 hours!! 6 HOURS!! Needless to say, that will never work. Lydon does pretty good maintaining his blood sugar but metabolically there is no way I would take that chance with him. So, I started making calls to be granted the "exception to the rule" card and was not very succesfull. I did talk to a couple of nurses including the mito clinic nurse who all agreed with me but nobody I talked to seemed to have the power to grant any exceptions. So, after our appointment with GI tomorrow and trip to the lab and our sleep study/EEG tuesday night I guess I will try again to get in touch with somebody who does have the power to make exceptions. Otherwise, I guess we will have to be admitted in order to get this done. Once all of this is done we will go back to Dr. S and come up with a plan of how we are going to best treat this. If Lydons pressure remains where it has been, there is no doubt we will have to put him on medicine. If it stabilizes a little bit we may be able to wait until after he is two and look at things again in the summer. GI issues...heart?....kidneys? You know, Ive expected for things to frequently come up with Lydon but heart, kidneys, stomach, intestines....REALLY?! Couldnt it just be an ingrown toenail? A cavity maybe? Two cavities even.. I'm not too proud to say that I have bargained some with God. Ive offered Him all of the above options as alternatives to the heart or kidney issue. I'm also not too proud to say that He hasnt given me any answers. But, He has given us some promises. He promised that He would never put more on us than we could handle and He promised He'd never leave or forsake us. "The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.”
Deuteronomy 31:7-9 I am hanging on to this scripture and frequently reminding myself that HE has it all under control. If these tests do show an issue with Lydons heart or kidneys then obviously it is something that we need to know and be aware of. Thank you to all of those who have continued to check on us, pray for us and send an encouraging email, text, phone call or visit. It really means a lot and keeps us going on days like last Thursday. I will update again after the appointments we have this week. Please keep praying for us and Lydon. Please pray specifically for our current nursing care situation. It is really being a difficult adjustment for me. I do need some help/relief with Lydon but it is being very hard for me to accept having somebody else here in my home and not doing everything for him myself. I need help with this. Much love to all!

1 comment:

  1. Jana, I can only imagine how hard it is for you to have a stranger come into your home and try to care for Lydon. As a mother you are the best caretaker he can have but look at it this way, he needs you rested and strong and focused and you will only get that way but letting someone help you with him. Noone can do it the same as you but they can try and he is so very loveable that anyone will fall crazy head over heels in love with him. As always I will continue to pray for all of you. You are always on my mind and in my heart. You and Jonathan are AMAZING! Lydon could not have better parents and a better family.
    I love you!