Tuesday, January 21, 2014
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Tuesday, January 14, 2014
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Wednesday, January 1, 2014
Wednesday, December 11, 2013
He's Only 11 :(
Thankfully Matthew was discharged from the hospital last
night and got a good night's sleep at home. His blood pressure medication
dosage was increased and this has helped get his bp much more stable. We
got a call back this afternoon from his nephrologist at Childrens and after he
met with the transplant surgeon this morning, it was decided that Matthew does
indeed need to undergo an arteriogram to look at each of the vessels in his
right kidney. The suspicion is that the blockage in his right kidney has
worsened over the last five years and is the culprit behind the sudden increase
in his blood pressure. The only definitive way to look at the tiny
vessels is by an arteriogram. The doctors want it to be done by an
interventional radiologist so if there is a vessel that can be repaired, it can
be done while they are in there. Our prayer would be that the blocked
artery could be opened successfully and that would do the trick. Of
course, we know that is not a guarantee. His doctor's have discussed with
us the possibility, depending on the severity of the occlusion, that if this is
unsuccessful he may need to have the right kidney auto transplanted just like
his left one was. We will cross that bridge when it is time and pray for God's
healing.
Thursday, November 21, 2013
Hypertension Again For My Little One
Well, we held out hope that by today Matthew's blood pressure would be trending down. That didn't happen. His bp at his nephrologists office was 140/86. MUCH higher than where an 11 year old should be. Given his history and the fact that we know that both of his kidneys are not "perfect", he has decided to put him on a medicine to help control the bp for now until he can have some additional detailed studies done of both kidneys. I am so very grateful that we have been educated and know how important blood pressure monitoring is for children and the importance of every parent knowing what a baseline blood pressure is for their children. We know Matthew's baseline and we knew when to seek help when it became an issue. KYKN.....KNOW YOUR KID'S NUMBERS! It could save their life.
Wednesday, November 6, 2013
The Weight Is Too Heavy On My Shoulders
Being in a situation where you feel like all hope is lost and you have the weight of the world on your shoulders is not enviable by anyone. Then, there is always that person of positivity that will tell you God will not give you more than you can carry. Really? During the darkest days of Matthew's illness I often had private conversations with God, asking just what He thought I could bear. Because I knew that my shoulders had all they could carry. I needed some of the weight lifted. Why were we chosen to carry this burden?
There was no answer revealed during those conversations. All I could do was tell myself that there has to be a point to all of it. As a mom, I needed that point to be made very clear, very soon! Holding onto my faith and trusting in God is really hard when you want to be on your time and not on God's watch.
What I learned through all of it is that we are never on "our" time. God is always the one moving the hands of the clock around in a circle. I am grateful that He always found a way for me to see that he was truly in control and to trust. Faith doesn't keep bad things from happening. It just gives you the strength to deal with them when they come.
There was no answer revealed during those conversations. All I could do was tell myself that there has to be a point to all of it. As a mom, I needed that point to be made very clear, very soon! Holding onto my faith and trusting in God is really hard when you want to be on your time and not on God's watch.
What I learned through all of it is that we are never on "our" time. God is always the one moving the hands of the clock around in a circle. I am grateful that He always found a way for me to see that he was truly in control and to trust. Faith doesn't keep bad things from happening. It just gives you the strength to deal with them when they come.
Tuesday, November 5, 2013
Mommy, Does That Mean I Died?
When your child is laid in your arms for the first time, you look into their innocent eyes and see the promise of a lifetime of experiences. As I prepared for Matthew's arrival, I dreamed of all the great times his childhood would hold. Playing tball and soccer for the first time. His first day of kindergarten. I wondered what kinds of friends he would choose. What kind of foods would he like. There was so much we couldn't wait to share with this new little being. I don't think I ever put much time or thought into anything other than the positives. It was just assumed everything would be perfect and we would be in control of his little life and destiny. Boy was I wrong. God had this under control and had other, even greater plans, for Matthew. No where in my mental preparations did I give thought to the first time he would ask me, "Mommy, does that mean I died?"
Matthew's life, just like every other child, has been filled with many "firsts." Some of these I wish would have been erased. His first IV, first surgery, first Christmas in the hospital. But, I truly realize this is the path we were meant to walk. And no one understands it better, or puts in into clearer perspective, than my sweet 11 year old.
There was a day in the spring of 2007 that will be etched into the minds of my husband, closest friends, and myself forever. It was on that spring morning that we stood at my son's hospital bedside and prayed for God not to take him as we feared he was passing from this earth. A time when his eyes rolled back into his head and went completely unresponsive and lethargic. It was noted in his medical chart that he had an episode, during an interval of several harrowing minutes, which could not be explained. After a full CT of his brain, we had a neurologist give us a simple answer of sometimes there are just things that can't be explained medically.
That time interval of just a few minutes has changed our lives in ways that could not be imagined. It was nearly a month after Matthew's experience when he shared it with us. During that time, we knew there was something very heavy weighing on his little soul. Initially we thought it was just the stress and worry of knowing he had been so sick and in the hospital. On the night he finally shared what had been plaguing his soul, it was as though a load of bricks were lifted off his shoulders. From then on, our lives had different meaning to all of us. It was a change of nothing but positive. We knew that Matthew had a life of purpose. My husband and I had feared we were losing Matthew on that spring morning. After he woke up, we were relieved and then moved forward to continue to try and understand what was making him sick. We did not give any further thought to that specific episode after the neurologist assured us he had not had a stroke or had not slipped into a coma briefly.
It wasn't until the bravery Matthew showed by sharing his experience, did I really come full circle and know just exactly how close we came to losing him. I will say we all live a life of purpose now and have a strong desire to give back and help others. His story has helped many people already, privately, to heal and understand the peace and beauty that is on the other side. The prospect of his story being able to help thousands more after his story is finally shared publicly is amazing. On March 11, 2014, people will have the opportunity to know the full path of events.
Matthew's life, just like every other child, has been filled with many "firsts." Some of these I wish would have been erased. His first IV, first surgery, first Christmas in the hospital. But, I truly realize this is the path we were meant to walk. And no one understands it better, or puts in into clearer perspective, than my sweet 11 year old.
There was a day in the spring of 2007 that will be etched into the minds of my husband, closest friends, and myself forever. It was on that spring morning that we stood at my son's hospital bedside and prayed for God not to take him as we feared he was passing from this earth. A time when his eyes rolled back into his head and went completely unresponsive and lethargic. It was noted in his medical chart that he had an episode, during an interval of several harrowing minutes, which could not be explained. After a full CT of his brain, we had a neurologist give us a simple answer of sometimes there are just things that can't be explained medically.
That time interval of just a few minutes has changed our lives in ways that could not be imagined. It was nearly a month after Matthew's experience when he shared it with us. During that time, we knew there was something very heavy weighing on his little soul. Initially we thought it was just the stress and worry of knowing he had been so sick and in the hospital. On the night he finally shared what had been plaguing his soul, it was as though a load of bricks were lifted off his shoulders. From then on, our lives had different meaning to all of us. It was a change of nothing but positive. We knew that Matthew had a life of purpose. My husband and I had feared we were losing Matthew on that spring morning. After he woke up, we were relieved and then moved forward to continue to try and understand what was making him sick. We did not give any further thought to that specific episode after the neurologist assured us he had not had a stroke or had not slipped into a coma briefly.
It wasn't until the bravery Matthew showed by sharing his experience, did I really come full circle and know just exactly how close we came to losing him. I will say we all live a life of purpose now and have a strong desire to give back and help others. His story has helped many people already, privately, to heal and understand the peace and beauty that is on the other side. The prospect of his story being able to help thousands more after his story is finally shared publicly is amazing. On March 11, 2014, people will have the opportunity to know the full path of events.
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