Tonight we found ourselves with heavy hearts and feeling nauseous. I'm imagining the night before surgery is going to be horrible. Its just the night before an MRI. Ella knows she is getting an IV tomorrow in order to sleep through the MRI and she is not handling it well. She is sleeping in our bed.
For me it's not her anxiety and tears over the IV, but knowing that tomorrow we will have more pictures of what's there and still we won't have a solid answer and the plot could still thicken, and we have to wait longer.
Seperation from the kids gives us both anxiety right now. I don't do well alone with my thoughts.......then I google. Bad. Bad. Idea. I told the doctor the other day I had not called to speak with the oncologist because I didn't want to go there yet in my head. He told me he understood that an agreed it really wouldnt help right now anyway. It makes sense to me that it's not cancer.
Sometimes I even find myself forgetting I'm having a baby in 12 days or less. If I weren't pregnant I am pretty sure I'd be asking the doc for some calming drugs. I hate this uneasy feeling that never ceases. Things are so normal, everyone is so healthy, talking back, fighting, running, playing, laughing...... But there's this thing....... When I remember its there I feel like someone punched me in the stomach.
In Sunday school today they taught the story of David and Goliath to the kids . Rudy told us the story in the car after we left (wish I had I on video, it was precious!) and it totally opened up dialog about bravery and how God will be with her tomorrow when she gets the IV.
The sermon for the grown-ups was about not focusing on the greatness of the problem and the human resources to fix it but instead focusing in th greatness of our God and His resources. It's the waiting and downtime when everything happens, when our leaning on God's greatness occurs, and rather than being concerned with our own overwhelming thoughts we look to Him and He will provide.
Sunday, August 4, 2013
Friday, August 2, 2013
6:30 on a Friday night..... don't Doctors go home for the weekend?
I thought it was over for the weekend. Calls from doctors that is. I'm not used to seeing the phone ring from NMCP and it not be 953-0000. A new 953 number showed up at 6:30PM after Jon and his mom left to take care of some last minute things at the Portsmouth house and the kids ran out the door to the playground. Dr. Fox the urologist who we were supposed to meet with on the 12th called to get Ella in for an MRI first thing Monday morning. (first thing is apparently 8am by the way. really? 8am is first thing in the military? ) She needs blood work, and probably an IV. Ugh. We never should have told her she wasn't going to get those again unless / when she had surgery.
Anyway, in "reconstructing" some images on the last CT the new images are making them wonder if what they are seeing is more the adrenal gland. Tumor was mentioned again and also that there are many kinds of tumors, not all of which are terrible. Not that that is what they saw, but a possibility and of course she mentioned that "when we see calcifications people automaticly think "tumor" but that isn't always the case." She did ask how Ella was feeling, if she had headaches, or nausea, or any other symptoms and the fact that she doesn't is very good.
I'm overwhelmed.
I don't mean this blog entry to sound like I'm whining. I'm SO grateful for the care we are getting and that this Dr. called me at 6:30 on a Friday night. Surely she wants to call parents with kids who have scary things growing in them and talk to them first thing before she starts her weekend. I just don't want anything worse and I don't know if this could be worse than what they were thinking before and I don't want to google it because we all know what happens when you google medical issues, you ONLY get worst case scenarios. Maybe I can have the baby Saturday or Sunday night and we can just all be at the hospital on Monday morning at what I consider "first thing" anyway.
Anyway, in "reconstructing" some images on the last CT the new images are making them wonder if what they are seeing is more the adrenal gland. Tumor was mentioned again and also that there are many kinds of tumors, not all of which are terrible. Not that that is what they saw, but a possibility and of course she mentioned that "when we see calcifications people automaticly think "tumor" but that isn't always the case." She did ask how Ella was feeling, if she had headaches, or nausea, or any other symptoms and the fact that she doesn't is very good.
I'm overwhelmed.
I don't mean this blog entry to sound like I'm whining. I'm SO grateful for the care we are getting and that this Dr. called me at 6:30 on a Friday night. Surely she wants to call parents with kids who have scary things growing in them and talk to them first thing before she starts her weekend. I just don't want anything worse and I don't know if this could be worse than what they were thinking before and I don't want to google it because we all know what happens when you google medical issues, you ONLY get worst case scenarios. Maybe I can have the baby Saturday or Sunday night and we can just all be at the hospital on Monday morning at what I consider "first thing" anyway.
A little clarity, no answers, and a little more waiting.....
Jon made it in Tuesday night pretty darn quickly after I called him in hysterics. His mom came in late Wednesday night to lend us a hand for the next month. I'm not sure if there are any more life changing events that could occur right now with a new baby coming into the world in 15 days or less, becoming landlords for the first time as of today(and still working on and fixing the house they are moving into on Saturday), preparing for Jon's deployment, and a daughter with something really frigging scary on her kidney......
Fortunately as everyone says, God doesn't give us what we can't handle. We can in fact handle "a shit-ton" (which I was told recently is a true unit of measure:-) and a "shit-ton" we are getting handed to us. It's been a very calm few years. I knew there was a storm brewing. In these storms God also exposes all those people who bless our lives with love and support. We have had such amazing outpourings of love, comfort, and support from family, friends and neighbors both new and old. Without those people (you reading this) and God's grace we would not be standing.
The meeting with the nephrologist calmed us all down a bit. A BIT. There is still possibility of worst case- *cough* cancer *cough cough* but we were told by the kidney specialist that what they see in the imaging does not look like a Wilms Tumor. If it had or did they would have sent Ella directly to the OR and had it gone.
The list of things it could be is extensive. Of them all the worst is cancer obviously. I HATE HATE HATE HATE it!!! ) No matter what, they have to go in to see and know exactly what "it" is. There is definitely calcification on the upper pole that they need gone. From the way she described it the calcification is surrounding some tissue that lit up during the CT with contrast. So from my understanding they will go in and take out the upper pole of her kidney. They will biopsy the tissue and if it is cancerous they will then take the entire right kidney that day.
Ella's case is going to be presented to a team of urologists and perhaps there are some other specialists that will be there who are not all pediatrics, on Thursday Aug 8. They will look at her scans and hopefully have additional input on what it could be and what the course of action should be.
The 12th we meet with the new pediatric Urologist at NMCP who will determine the surgery day. It seems like things will move fast.
That is all we know and what we learned.
Prior to our visit with the nephrologist I spoke with Ella's PCM pediatrician Dr. Van Den Boom who started this whole process for us. (He's a Navy doc, we never see him for anything unless I schedule way in advance) I mentioned my concern to him about her BP back in May and he was immediately concerned because I was. He had not been kept in the loop about this week's stuff so I'm glad I called him and thrilled he called me back offering his personal cell phone number and opportunity to call him any time with any questions I have. He mentioned that he felt horrible that Ella had been having documented hypertension for (get this) 5 (FIVE!!!!) years. FIVE! I pressed the issue for a year. But was always sluffed off about it and told it was on the high side of normal, and that she probably has "white coat syndrome". It had been in her chart since before she turned 2! (She is 7.5 years old) He also mentioned that he honestly didn't see this coming. He also got mad when I told him that the cardiologist we saw on Tuesday said Ella definitely was NOT hypertensive. He said he was going to call him and ask him why he said that. He had put it in the notes in the referral he sent the cardiologist..... notes the Dr. did not read. It made me a little happy that Dr. Van Den Boom got mad.
Now we wait until the 12th. Meanwhile, Ella only knows that no one knows what is on her kidney and that we have to figure out what it is in case it is something that could make her sick or hurt her. She is getting a 24 hour blood pressure cuff today which she is not thrilled about but happy it doesn't involve needles. She doesn't know there will be surgery. No need now to start stressing her out. She is completely fine, happy, feeling awesome and all she wants to do is play at the playground with her people.
Ella is one brave kid EXCEPT when it comes to needles...... For example. The electric went out last night during a big storm. It was PITCH black in our house. I didn't even like it. Rudy was terrified. Not Ella, she was walking around alone looking for her flashlight like it was no big thing.
We ask for your continued prayers. Our house is just about done and our renters move in tomorrow. That stress is hopefully about to be minimized. I'm still pregnant and as my due date is not until the 17th. It would be kind of awesome if the baby came during this down time of waiting so that we can all bond with him before Ella goes in for surgery. Pray for guidance for the doctors to choose what's best for our girl, to know what they are looking at and also for it to not be cancer, as well as peace and calmness for our family.
Thanks again for your love and support.
Fortunately as everyone says, God doesn't give us what we can't handle. We can in fact handle "a shit-ton" (which I was told recently is a true unit of measure:-) and a "shit-ton" we are getting handed to us. It's been a very calm few years. I knew there was a storm brewing. In these storms God also exposes all those people who bless our lives with love and support. We have had such amazing outpourings of love, comfort, and support from family, friends and neighbors both new and old. Without those people (you reading this) and God's grace we would not be standing.
The meeting with the nephrologist calmed us all down a bit. A BIT. There is still possibility of worst case- *cough* cancer *cough cough* but we were told by the kidney specialist that what they see in the imaging does not look like a Wilms Tumor. If it had or did they would have sent Ella directly to the OR and had it gone.
The list of things it could be is extensive. Of them all the worst is cancer obviously. I HATE HATE HATE HATE it!!! ) No matter what, they have to go in to see and know exactly what "it" is. There is definitely calcification on the upper pole that they need gone. From the way she described it the calcification is surrounding some tissue that lit up during the CT with contrast. So from my understanding they will go in and take out the upper pole of her kidney. They will biopsy the tissue and if it is cancerous they will then take the entire right kidney that day.
Ella's case is going to be presented to a team of urologists and perhaps there are some other specialists that will be there who are not all pediatrics, on Thursday Aug 8. They will look at her scans and hopefully have additional input on what it could be and what the course of action should be.
The 12th we meet with the new pediatric Urologist at NMCP who will determine the surgery day. It seems like things will move fast.
That is all we know and what we learned.
Prior to our visit with the nephrologist I spoke with Ella's PCM pediatrician Dr. Van Den Boom who started this whole process for us. (He's a Navy doc, we never see him for anything unless I schedule way in advance) I mentioned my concern to him about her BP back in May and he was immediately concerned because I was. He had not been kept in the loop about this week's stuff so I'm glad I called him and thrilled he called me back offering his personal cell phone number and opportunity to call him any time with any questions I have. He mentioned that he felt horrible that Ella had been having documented hypertension for (get this) 5 (FIVE!!!!) years. FIVE! I pressed the issue for a year. But was always sluffed off about it and told it was on the high side of normal, and that she probably has "white coat syndrome". It had been in her chart since before she turned 2! (She is 7.5 years old) He also mentioned that he honestly didn't see this coming. He also got mad when I told him that the cardiologist we saw on Tuesday said Ella definitely was NOT hypertensive. He said he was going to call him and ask him why he said that. He had put it in the notes in the referral he sent the cardiologist..... notes the Dr. did not read. It made me a little happy that Dr. Van Den Boom got mad.
Now we wait until the 12th. Meanwhile, Ella only knows that no one knows what is on her kidney and that we have to figure out what it is in case it is something that could make her sick or hurt her. She is getting a 24 hour blood pressure cuff today which she is not thrilled about but happy it doesn't involve needles. She doesn't know there will be surgery. No need now to start stressing her out. She is completely fine, happy, feeling awesome and all she wants to do is play at the playground with her people.
Ella is one brave kid EXCEPT when it comes to needles...... For example. The electric went out last night during a big storm. It was PITCH black in our house. I didn't even like it. Rudy was terrified. Not Ella, she was walking around alone looking for her flashlight like it was no big thing.
We ask for your continued prayers. Our house is just about done and our renters move in tomorrow. That stress is hopefully about to be minimized. I'm still pregnant and as my due date is not until the 17th. It would be kind of awesome if the baby came during this down time of waiting so that we can all bond with him before Ella goes in for surgery. Pray for guidance for the doctors to choose what's best for our girl, to know what they are looking at and also for it to not be cancer, as well as peace and calmness for our family.
Thanks again for your love and support.
Tuesday, July 30, 2013
What's next?
So some of you I may have talked with about how the nephrologist called me after our last visit and expressed that her radiologist felt that what was seen on the ultrasound done at NMCP (Naval Hosptial) was artifacts and that she wanted to re-do the ultrasound at CHKD (Children's hospital) on a day when she was there.
That day was today.
We started out at 8am with an echo and meeting with the cardiologist. Her heart looked perfect on the echo and he felt she didn't have any issue with hypertension and gave me 120/85 as a high number for a kid, said he would need to plot her on the growth chart for an accurate "good range" which he didn't do but did give me a chart to do it myself and sent us walking. According to the chart she falls in the 95-99th percentile in her average BP that we find her with...... BUT he's a cardiologist who says my kid isn't hypertensive surely the kidney ultrasound is going to be perfect too......
We had an appointment next at 10am in the kidney clinic at another CHKD office in Norfolk. They did an ultrasound and the tech went and met with the radiologist and came back in with their typical questions of "has she ever had a UTI, kidney trauma etc" at which I answered no as usual, and they took more pictures. I knew then that they saw the same mysterious "whatever" they saw on the last one. We went up and met with Dr. Restaino (the pediatric nephrologist) and she told us she still had no idea what they were seeing and they needed a CT. SO she did the CT, which was followed by a CT with contrast.
Lets me start with the fact that Ella getting the IV for the contrast was of course horrible. HORRIBLE. A team of nurses holding her down and me totally giving into my own tears and having to hold her head and yell at her to calm down. She was in pure hysterics. She did calm down and did well and is proud to talk about the experience.
I could not go in with her for the CT and be near the radiation because I'm pregnant. I feel horrible for yelling at her and paced and twitched the entire time.
By this time it was 3:00PM and the nephrologist wanted to meet with us but we had 800 people meeting us at the Portsmouth house today, we were in a line of several, and the kids had not eaten since breakfast. So the Dr. said it would be fine if she called us at home. Again, in my simple mind, how bad can news be over the phone?
The call came around 6. Just after the A/C guy left our Portsmouth house. The news was a little like:
There is definitely something on her right kidney. Her left kidney is in fact fine. We don't know for sure what is on her right kidney but you're telling me she has never had any trauma, infections etc that involved her kidneys right? (Answer is always the same nothing that we know of has ever happened to her kidneys.) We see an abnormality that is not a normal abnormality that we see in kids. It looks like it could be an infection but the type would be a type that we normally see in older people and she would likely have more symptoms and be sicker than she is. (she isn't sickly at all except for the elevated BP) SO the other thing it could be is a tumor. We could stick a needle in there and biopsy it ......this part followed by why that's not a good idea blah blah blah...... I think this is where I stopped breathing or maybe started hyperventilating and things are fuzzy from there.....
I also heard something about a chest x-ray on Thursday (which Jon got too when he talked to the Dr.) and that they want it to be done at the Naval Hospital because oncology is right there, something about removing the entire kidney and people live totally normal lives with just one kidney....... Tumors like this we never find this small, it is contained at 2 cm, normally when we find tumors here they are 10+ cm.
Oh my goodness. Hole LEE crap. Someone used my beautiful, lively, goofy, sweet girl's name in the same sentence as the word Cancer and she is 7.5 years old, and barely 50lbs of solid muscle, energy and spunk.
Jon was in Oklahoma and jumped on the first plane home. His mom is coming in tomorrow night as she had planned to come next month when the baby comes now she will be with us longer to help. Praise God for her.
Oh yeah. I'm having baby #3 in 18 days or less. This is about to get real.
That day was today.
We started out at 8am with an echo and meeting with the cardiologist. Her heart looked perfect on the echo and he felt she didn't have any issue with hypertension and gave me 120/85 as a high number for a kid, said he would need to plot her on the growth chart for an accurate "good range" which he didn't do but did give me a chart to do it myself and sent us walking. According to the chart she falls in the 95-99th percentile in her average BP that we find her with...... BUT he's a cardiologist who says my kid isn't hypertensive surely the kidney ultrasound is going to be perfect too......
We had an appointment next at 10am in the kidney clinic at another CHKD office in Norfolk. They did an ultrasound and the tech went and met with the radiologist and came back in with their typical questions of "has she ever had a UTI, kidney trauma etc" at which I answered no as usual, and they took more pictures. I knew then that they saw the same mysterious "whatever" they saw on the last one. We went up and met with Dr. Restaino (the pediatric nephrologist) and she told us she still had no idea what they were seeing and they needed a CT. SO she did the CT, which was followed by a CT with contrast.
Lets me start with the fact that Ella getting the IV for the contrast was of course horrible. HORRIBLE. A team of nurses holding her down and me totally giving into my own tears and having to hold her head and yell at her to calm down. She was in pure hysterics. She did calm down and did well and is proud to talk about the experience.
I could not go in with her for the CT and be near the radiation because I'm pregnant. I feel horrible for yelling at her and paced and twitched the entire time.
By this time it was 3:00PM and the nephrologist wanted to meet with us but we had 800 people meeting us at the Portsmouth house today, we were in a line of several, and the kids had not eaten since breakfast. So the Dr. said it would be fine if she called us at home. Again, in my simple mind, how bad can news be over the phone?
The call came around 6. Just after the A/C guy left our Portsmouth house. The news was a little like:
There is definitely something on her right kidney. Her left kidney is in fact fine. We don't know for sure what is on her right kidney but you're telling me she has never had any trauma, infections etc that involved her kidneys right? (Answer is always the same nothing that we know of has ever happened to her kidneys.) We see an abnormality that is not a normal abnormality that we see in kids. It looks like it could be an infection but the type would be a type that we normally see in older people and she would likely have more symptoms and be sicker than she is. (she isn't sickly at all except for the elevated BP) SO the other thing it could be is a tumor. We could stick a needle in there and biopsy it ......this part followed by why that's not a good idea blah blah blah...... I think this is where I stopped breathing or maybe started hyperventilating and things are fuzzy from there.....
I also heard something about a chest x-ray on Thursday (which Jon got too when he talked to the Dr.) and that they want it to be done at the Naval Hospital because oncology is right there, something about removing the entire kidney and people live totally normal lives with just one kidney....... Tumors like this we never find this small, it is contained at 2 cm, normally when we find tumors here they are 10+ cm.
Oh my goodness. Hole LEE crap. Someone used my beautiful, lively, goofy, sweet girl's name in the same sentence as the word Cancer and she is 7.5 years old, and barely 50lbs of solid muscle, energy and spunk.
Jon was in Oklahoma and jumped on the first plane home. His mom is coming in tomorrow night as she had planned to come next month when the baby comes now she will be with us longer to help. Praise God for her.
Oh yeah. I'm having baby #3 in 18 days or less. This is about to get real.
Friday, July 12, 2013
Pediatric Nephrologist and other appointments-
This week I took Ella for follow up blood work on Monday to do a lipid panel as her last one showed that her LDL cholesterol was 1 point above normal. This freaks me out since both my kids are very healthy eaters. They love their vegetables and frankly Jon and I are food snobs and rarely do they get to eat crap, at least compared to the rest of American children. Ella is a 4 foot 1 inch, 51 lb, active, healthy, 7 year old with hypertension and high cholesterol......... Odd picture? We have not heard the results yet but are hoping the first was a fluke.
On Tuesday we visited CHKD (the local children's hospital) for an EKG. We had two wait 2 hours for our orders to be sent from Naval for a 10 second test and then had to schedule an Echo and a consult with the cardiologist there on 2 different dates because they mis-read the orders....... That said, it was a pleasant 2 hours spent, as it was only my time and not money and the kids were SO well behaved. Our care is free, and that is priceless right now. I'm happy to spend two hours and reflect on how lucky we are to have awesome health insurance and to be receiving great care. It seems the EKG looked normal. Whew.
Today was the big appointment with the Pediatric Nephrologist, Dr. Restieno. Dr. Restieno contracts with the Navy and sees patients at NMCP on Fridays and the rest of the time works at CHKD. She was great, to the point, and I feel she was very thorough. She explained Ella is in the 90-95th percentile for her BP. We need to do more investigation on it and she spoke of possibly doing a 24 hour monitoring of it. The hormone that one's body releases to control blood pressure was 0.76 which is low and good. If her body was trying hard to keep the blood pressure low the number would have been around 5 or higher. At least that's how I understood it. Either way she is in the upper side of normal or possibly officially high..... This corresponds with the consensus over the last year.
Next she talked about Ella's Kidney size. Her left is a little smaller than the right. The Right is the one with the "something" on it. Typically if the one with something on it isn't working correctly then the other will grow to compensate. But this s not the case. She thinks it could be human error in the imaging due to the fact that the left kidney is simply harder to image and it could be the same size. More imaging s needed.
The kicker today was that the "something" the radiologist called "scarring" she strongly doesn't think it's scaring. She is trying to decide on the best test to figure out exactly what it is......
We are still left with " What's on her right kidney? Is that causing her hypertension? She did not seem to think it was a tumor or that it was affecting her kidney function. She ruled out our fear of "could it be from lead toxicity after living in an old home with lead paint?" I don't know what the other possibilities could be other than a vascular mass or hemangioma. With her history the doctor agreed this is very possible. The image was blurry on the U/S. blah blah blah.......
We left the appointment feeling like we are getting great care. We also left feeling clueless and that it's possible there could be a whole lot of nothing going on, OR a whole lot of something.
Next week Ella has the Echo on the 18th, Renal study the 22nd, ped. Cardiologist appt, the 31st. Hopefully somewhere in there she gets an MRI or whatever is needed to best image and identify what's up on her Rt. Kidney. .
I can't express how grateful we are for our military health benefits. Nor how grateful we are for your love and prayers. Till next time!
Love,
Em
On Tuesday we visited CHKD (the local children's hospital) for an EKG. We had two wait 2 hours for our orders to be sent from Naval for a 10 second test and then had to schedule an Echo and a consult with the cardiologist there on 2 different dates because they mis-read the orders....... That said, it was a pleasant 2 hours spent, as it was only my time and not money and the kids were SO well behaved. Our care is free, and that is priceless right now. I'm happy to spend two hours and reflect on how lucky we are to have awesome health insurance and to be receiving great care. It seems the EKG looked normal. Whew.
Today was the big appointment with the Pediatric Nephrologist, Dr. Restieno. Dr. Restieno contracts with the Navy and sees patients at NMCP on Fridays and the rest of the time works at CHKD. She was great, to the point, and I feel she was very thorough. She explained Ella is in the 90-95th percentile for her BP. We need to do more investigation on it and she spoke of possibly doing a 24 hour monitoring of it. The hormone that one's body releases to control blood pressure was 0.76 which is low and good. If her body was trying hard to keep the blood pressure low the number would have been around 5 or higher. At least that's how I understood it. Either way she is in the upper side of normal or possibly officially high..... This corresponds with the consensus over the last year.
Next she talked about Ella's Kidney size. Her left is a little smaller than the right. The Right is the one with the "something" on it. Typically if the one with something on it isn't working correctly then the other will grow to compensate. But this s not the case. She thinks it could be human error in the imaging due to the fact that the left kidney is simply harder to image and it could be the same size. More imaging s needed.
The kicker today was that the "something" the radiologist called "scarring" she strongly doesn't think it's scaring. She is trying to decide on the best test to figure out exactly what it is......
We are still left with " What's on her right kidney? Is that causing her hypertension? She did not seem to think it was a tumor or that it was affecting her kidney function. She ruled out our fear of "could it be from lead toxicity after living in an old home with lead paint?" I don't know what the other possibilities could be other than a vascular mass or hemangioma. With her history the doctor agreed this is very possible. The image was blurry on the U/S. blah blah blah.......
We left the appointment feeling like we are getting great care. We also left feeling clueless and that it's possible there could be a whole lot of nothing going on, OR a whole lot of something.
Next week Ella has the Echo on the 18th, Renal study the 22nd, ped. Cardiologist appt, the 31st. Hopefully somewhere in there she gets an MRI or whatever is needed to best image and identify what's up on her Rt. Kidney. .
I can't express how grateful we are for our military health benefits. Nor how grateful we are for your love and prayers. Till next time!
Love,
Em
Wednesday, June 12, 2013
Bummer news.
Today I cried after reading old blog posts and looking at pictures of my sweet Ella starting preschool. She has grown and changed so much especially in the past year. Seeing all those old pictures with her chubby little cheeks after looking at pictures of my sweet Ella's scarred right kidney on ultrasound earlier. I know right? Pictures of her right kidney with a scar on the top....... (left one normal and healthy)
Over the past year of random doctor appointments for poison oak rashes, sore throats, regular old illnesses, and regular Blood pressure checks at those visits, Ella has been running a little high in her blood pressure. Because of the way military medicine works we never see the same doctor unless we schedule a week or two out with her PCM, and not until we randomly got in with her PCM did a single doctor seem concerned that I was concerned about her elevated blood pressure. Each other doctor blamed her bp on 'white coat syndrome' meaning she gets nervous at the dr office and thus her bp rises. Both Ella's dr and his senior attending agreed it was time to investigate if I was concerned, and IF I was concerned, they were concerned as well.
*Let me back up and say high blood pressure in an otherwise healthy child is rare and usually a sign of kidney damage/disease.*
*Let me back up and say high blood pressure in an otherwise healthy child is rare and usually a sign of kidney damage/disease.*
A couple weeks ago Ella had urine and blood tests and today the first ultrasound. So sweet and quiet and scared, she questioned and worried about why she was having the tests done and the "what ifs" of having "something wrong" with her kidneys. I along with her doctors felt pretty strongly that the tests would reveal no underlying issue with her kidneys but certainly nervous, and explained to Ella in her worries how we all felt and that making sure she is healthy and perfect is what the tests are for.
She has watched me have ultrasounds several times and knew what to expect, yet approaching the bed for it to be her turn she hesitated, started to cry a bit, and had to be coaxed to lay down and relax. Quickly there after, she began to enjoy seeing what's inside her tummy and then began sharing all of what is going on in the life of our family with the kind U/S tech. Ha!
After the tech was finished taking pictures, she went and got the pediatric radiologist and he came to look as well. I sat in complete oblivion that there could possibly be something abnormal. He asked me a bunch of questions about her past medical history which is basically perfect. (except for what I remembered just a bit ago about her multiple subcutaneous hemangiomas when she was just a few weeks old. Remember that?) He in fact saw scarring on her right kidney which he said could be the root of her high blood pressure. He questioned if she had ever had a UTI, trauma to her kidney, weird meds, or any other health issues. Perhaps a high fever caused it, perhaps there is something else going on? The possibilities (according to evil google) seem endless and terrifying.
I'm not the only parent with a kid who has a health issue. But right now, it's my kid and it's a big a deal as it was, is, or would be if it was yours. It may be less severe than your child's, it may be more and until we know for sure why it is there, or what caused it, it is what it is and we would appreciate your prayers for my sweet, gentle, innocent, Ella girl.
Today's ultrasound will hopefully be followed soon (as in today) with a conversation with her PCM. We have a renal study scheduled on July 22, an EKG and possibly an MRI to get a better look at the scar, as well as a new relationship with a pediatric nephrologist.
That's what I know.......
Tuesday, March 30, 2010
Ballet ballet ballet ballet.....
Ella and her little friend Sydney have been taking ballet together at our YMCA for the past 6 weeks. As a member the cost of 6 weeks of ballet is only $25, $35 for non-members. Pretty much unheard of price relative to the dance studios around here. Considering she is merely 4 and has a 4 yr. old attention span and I'm pretty sure every 4 year old dreams of being a ballerina, we thought this was a great place to start. I was beyond pleased that the instructor was a running acquaintance of mine from the gym, and had no idea she was a ballerina herself, not to mention a great lady and sweet mom. For 25 bucks I expected very little but as always more than pleased with what the YMCA had to offer. I really and truly love our YMCA's in Hampton Roads...... we are so very lucky!
Anyway, parents are not allowed to be in the room with the girls during class, we can watch from the doors but it's hard. So the 6th week of class we are invited in to see the whole class. At this point I think it is more for the parents to see their little girls dance around happy to be in a tutu fulfilling their little life dream thus far. Their feet and legs are tangled most of the time but it's just darling to watch and they are truly having a blast and so happy to be there. Below are some pictures and video I captured tonight. Some of the video I took tonight was of the class dancing to "You Are My Sunshine" a song special to Ella and I. Last week she told her teacher it was our song....awwww! I nearly cry every week when they dance to it, I was pleased to get it on video today.
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