Echo and Renal scans

Tomorrow (Tuesday) we will be having renal scans,xrays and the echo of Lydons heart done. Please say a prayer that we can get this done without sedation. I know it will be hard on Ly but being sedated is even harder for him. I will post an update asap. Also, please pray that we can get his sleep study done this week as well. We had to cancel it twice last week due to all of us being sick. And most importantly please pray for two of our mito friends. The Agnew family and Cooper Knights family. Both of these sweethearts are in the very last stages of mito and aren't expected to live more than another day or two. I can't imagine the pain that these families are facing. They need strength and uplifting. Thanks for the love and prayers being said for all of us.

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!

Appointment Update

As promised, here's the update from our appointments this past week. On Monday, we saw the specialty pediatrician. I was looking forward to this appointment for quite some time. Up until now, we have not had a managing physician for Lydon. The pediatrician we were seeing has been wonderful to us but Lydon's continuing issues and need to maintain continuity of care has forced us to find someone who specializes in children with special needs. We were there for almost three hours. We discussed lots of things from the general to the detail-specific. First, we went over all of Lydons history and physical exam with one of the upper level interns. Then we met with the social worker and discussed some managment issues with his daily care like his therapies, equipment needs etc. She also asked me about what and if Jonathan and I had talked about what we would or wouldn't want done for Lydon in an emergency situation. Not your typical "well child" check up conversation! Then the doctor came in. He said that since he had gained a little length and weight(he's up to the 8th percentile) that he didnt feel it was necessary for us to see Endocrinology. Good news! One less specialist on the list. At least that's what I was thinking; but instead, we traded Endocrinology for Nephrology. The doc said that he had looked at Lydons vital signs past and present. He said he felt like it was safe to say that Ly is hypertensive and needs to be put on blood pressure meds. So, we have now been referred to a Nephrologist since kidney docs are the ones who take care of blood pressure issues in kiddos. Ive known for some time now that Lydons blood pressure was high. Ive mentioned it to several different docs before. Regardless, it has been overlooked or ignored. Im glad that it has finally caught the attention of the right person and is going to be treated. It is still upsetting to me that there is yet another problem and probably at least one new medicine to say nothing of the continued follow up exams and testing this diagnoses will bring us. He also talked to me about the issues with Lydons Igg(Immune system indicator). He had his nurse make some calls and got us in to see the Immunologist in about three weeks instead of three months.
We left there and walked over to the hospital to have some xrays done of Lydons tummy and see if it showed us what was going on there. The next morning we had a GI appt. I was very anxious about this appointment; because, in my opinion, Lydon has not been doing good GI wise. I'm not sure what happened to our GI doc since the last time we saw him. Brain aneurysm? Bi-polar event? I dont know? What I do know is that after our visit, it was clear that his recommendations were not what was right for Lydon. This type of issue/confrontation is always hard for me but the more it happens, the easier it becomes. Lydon is my priority...period! After all was said and done, we have an appointment to see a different physician who is familiar with Lydon and has a different approach. I am believing that this is going to be right person for us long term. Adding a new physician is one thing but I HATE having to change physicians! So, we will see the nephrologist about his blood pressure this coming Thursday, the new pedi next Monday for a follow up, then the new GI the next Monday. Our list of specialists keeps growing... it includes a Speciality Pedi,ENT, Gastroenterologist, Immunologist, Nephrologist, Neurologist, Pulmonologist/Sleep Specialist, a speech therapist, an occupational therapist and a physical therapist that all come at least once a week and we're a little late but we need to add a dentist and Opthamologist to that and probably some other "ologist" that Ive forgotten. Immunology, the Sleep specialist and Neurology/Mito Specialist appointments are all scheduled for March. Its a busy schedule thats for sure! I use to hope that we could find answers for things. Now, I dont know how much more I really want to know. I just hope that we can do whatever needs to be done in order to keep Lydon as strong, healthy and stable as possible. So, with that being said, we will continue doing what we are doing and trust that we are walking down the path that God has intended. As many of you know, we were hoping for a "snow storm" here in the Houston area today and that didnt happen but we made the best of it and did what we could to keep everybody happy and warm. Heres a pic of how the boys started off their day.