Tuesday, April 28, 2009
Family
Clare's preschool held a fundraiser at Chuck E. Cheese last week. We were a little apprehensive about doing Chuck E. Cheese with four kids (I haven't been there since Clare was a baby), but it was for a good cause. Everyone had a blast (even Violet enjoyed watching the chaos around her from the safety of the Baby Bjorn). Clare was a little overwhelmed at first by the noise and craziness, but once she scoped out the situation, she enjoyed herself playing games with Shawn and Jamie. I was on Simon patrol and spent my time either watching him play on the toddler climbing gym and slide or putting tokens in the Teletubbies ride. What fun! Clare's teacher snapped some photos and sent us these two great ones. The top photo is our family eating dinner (yes, even Violet is eating!) and the bottom photo is Clare with her teachers, Miss Karin and Miss Pam. Clare loves her teachers and loves school so much. Her teachers are awesome and work so well with the kids. Their love of their job and the kids they teach shine through them. We have been so blessed with Clare's placement in the preschool.
All My Updates
It's been a busy day in our household! And it's 95 degrees today in New Hampshire. Insane! The kids and I played outside for about 20 minutes this morning, then had to call it quits. Way too hot!
My god daughter Faith has been transferred to the NICU at a children's hospital, while her mother remains in a hospital an hour away. We continue to say lots and lots of prayers for this family, who are so dear to us. Having a child with medical needs ourself, we know how tense and stressful this situation is, especially with Faith being only hours old. I cannot imagine not being with my baby right after birth. At least I did not have to be parted from Clare, so my heart goes out to them.
We received two calls from Children's Hospital today about Clare. The first was from the scheduler again. The radiologist's schedule is full until July (and we were told he was "very open" - is that what they mean by that??), so once the July schedule is released, they will call us back to schedule it. She just did not want us waiting around wondering why no one was calling. Clare is on a waiting list if there is a cancellation, though. The second call was from the cardiac nurse who answered three questions for us - 1) Clare will be admitted overnight. 2) Clare will be under general anesthesia. And 3) The radiologist will determine on that day whether he wants to use a coil or glue. If he uses a coil, Clare will have another piece of metal in her for the rest of her life. So now we just wait some more. I love this game!
And finally, Jamie is almost done with his course of steroids and his allergy symptoms have not magically disappeared like they were supposed to. So now we are actually at the point of immunotherapy. I am now doing some more waiting for the nurse who arranges the shots to call me to go over everything. We have to go over Jamie's history again to determine what serum she is to order. Plus Jamie needs to not be actively symptomatic (good luck with that!) before he can start receiving the allergy shots, so it may be a good six weeks or so before that happens (which is usually how long it takes Jamie to clear up). And even more waiting...
My god daughter Faith has been transferred to the NICU at a children's hospital, while her mother remains in a hospital an hour away. We continue to say lots and lots of prayers for this family, who are so dear to us. Having a child with medical needs ourself, we know how tense and stressful this situation is, especially with Faith being only hours old. I cannot imagine not being with my baby right after birth. At least I did not have to be parted from Clare, so my heart goes out to them.
We received two calls from Children's Hospital today about Clare. The first was from the scheduler again. The radiologist's schedule is full until July (and we were told he was "very open" - is that what they mean by that??), so once the July schedule is released, they will call us back to schedule it. She just did not want us waiting around wondering why no one was calling. Clare is on a waiting list if there is a cancellation, though. The second call was from the cardiac nurse who answered three questions for us - 1) Clare will be admitted overnight. 2) Clare will be under general anesthesia. And 3) The radiologist will determine on that day whether he wants to use a coil or glue. If he uses a coil, Clare will have another piece of metal in her for the rest of her life. So now we just wait some more. I love this game!
And finally, Jamie is almost done with his course of steroids and his allergy symptoms have not magically disappeared like they were supposed to. So now we are actually at the point of immunotherapy. I am now doing some more waiting for the nurse who arranges the shots to call me to go over everything. We have to go over Jamie's history again to determine what serum she is to order. Plus Jamie needs to not be actively symptomatic (good luck with that!) before he can start receiving the allergy shots, so it may be a good six weeks or so before that happens (which is usually how long it takes Jamie to clear up). And even more waiting...
Prayers for Faith
Our newest god daughter, Faith Anne, was born this morning. However, she is having trouble breathing and is currently in an oxygen tent. She also may have broken her arm during delivery. We have been eagerly awaiting Faith's arrival, as has her mom and dad and siblings. Please send some prayers Faith's way!
Monday, April 27, 2009
Getting Closer
On the drive home today, I checked our voicemail and we still had not heard back from Children's. With hours in the car ahead of us, I called the nurse who worked with us a couple weeks ago. I was surprised (and thrilled) that I actually reached her and not her voicemail. She instantly knew who I was and, once I explained what I was looking for, she instantly pulled up Clare's information. So we got some answers today!
The interventional radiologist is going to perform a catheter embolization of the blood vessels. The nurse did not know whether the radiologist was going to use a coil (made of either stainless steel or platinum) or liquid glue to repair the vessels, so she is going to get back to us tomorrow with that information. Clare will have a pre-op day the day before the procedure and may have to stay overnight following the embolization to be sure the procedure worked. A cardiac anesthesiologist (versus a general pediatric anesthesiologist) will be on board, given Clare's medical history. We will meet with the anesthesiologist during pre-op, so will find out then exactly what method of anesthesia will be used. The nurse admitted that she did not have all the answers for us as this is a rare case (always lovely to hear those words!). She did say that she believed the anesthesia did not need to be as "deep" as if Clare was undergoing surgery, so hopefully Clare will not need to be intubated for anesthesia. The risks of a catheter embolization are less than those of doing an open surgery on the vessels, so we pray that the radiologist can indeed make this a one-shot deal.
Now we wait for the scheduler to call again, so we can actually get this procedure over with!
The interventional radiologist is going to perform a catheter embolization of the blood vessels. The nurse did not know whether the radiologist was going to use a coil (made of either stainless steel or platinum) or liquid glue to repair the vessels, so she is going to get back to us tomorrow with that information. Clare will have a pre-op day the day before the procedure and may have to stay overnight following the embolization to be sure the procedure worked. A cardiac anesthesiologist (versus a general pediatric anesthesiologist) will be on board, given Clare's medical history. We will meet with the anesthesiologist during pre-op, so will find out then exactly what method of anesthesia will be used. The nurse admitted that she did not have all the answers for us as this is a rare case (always lovely to hear those words!). She did say that she believed the anesthesia did not need to be as "deep" as if Clare was undergoing surgery, so hopefully Clare will not need to be intubated for anesthesia. The risks of a catheter embolization are less than those of doing an open surgery on the vessels, so we pray that the radiologist can indeed make this a one-shot deal.
Now we wait for the scheduler to call again, so we can actually get this procedure over with!
This Time I Actually Scream
Clare had a rough night last night. We are still in the hotel in Philadelphia, and she has had a LONG three days. She has had tons of fun, but everyone has been going to bed late and waking up early, so every night, Clare misses out on about 3-4 hours of sleep. She stopped napping over a year ago so she just goes, goes, goes all day and is like a little wilted, droopy flower by the end of the day. (She was the only child who did not sleep at all on the 7-hour car ride down here - even Jamie took a nap.)
The past two days have been in the 90's. We were not prepared for this heat wave and are not at home. Yesterday was my niece's Baptism. During church, Clare's face was flushed and you could tell she was feeling the heat. She has never been good in extremely hot or cold weather. Her body has a hard time adapting to temperatures, so if she becomes overheated, it is very difficult for her to cool down. The heat can also dehydrate Clare quickly, so we always have to be extra-diligent at getting fluids into Clare whenever it is hot. Thankfully, my sister Christina had filled up the kids' sippy cups with ice water prior to going to church, so Clare was able to drink that. Once we arrived at the air-conditioned restaurant for lunch after the Baptism, Clare cooled off and quickly regained her energy and charmed everyone there.
Once we got back to the hotel, Shawn took Jamie and Clare swimming (they had been begging all day), so come bedtime, Clare was exhausted. She also does not eat well when she is out of her home environment. Despite all our coaxing, I think she only ate two slices of cheese and some M&M's all day. Tired and hungry, Clare refused to even eat the offered pop tart at bedtime (one of the only things we had to eat in our hotel room at 9pm that Clare could actually manage) and melted down instead. She finally feel asleep exhausted, but woke up continuously in the night crying. Part of the time, she was not even awake, so Shawn and I alternately rubbed her back until she fell asleep again. One time, she was awake and that is when she told me that her left arm hurt. She had her pajama sleeve pushed up past her elbow on that arm (she does not like her sleeves pushed up, so this is unusual behavior for her) and kept complaining that it hurt. I felt her fistula and it was thrumming rapidly. I did not know what else to do, so I gave her some Tylenol and sat with her for a long time, stroking her head, until she eventually settled down and fell asleep again. I think that was around 2am. Now it is almost 7am, and she is still sleeping.
After that initial phone call on Thursday to schedule Clare's procedure, we have not heard back from Children's Hospital yet with more information on what the "procedure" entails. We are journeying home today, so I am planning on calling the nurse tomorrow who we dealt with while we were down there a couple weeks ago and demand some answers!
The past two days have been in the 90's. We were not prepared for this heat wave and are not at home. Yesterday was my niece's Baptism. During church, Clare's face was flushed and you could tell she was feeling the heat. She has never been good in extremely hot or cold weather. Her body has a hard time adapting to temperatures, so if she becomes overheated, it is very difficult for her to cool down. The heat can also dehydrate Clare quickly, so we always have to be extra-diligent at getting fluids into Clare whenever it is hot. Thankfully, my sister Christina had filled up the kids' sippy cups with ice water prior to going to church, so Clare was able to drink that. Once we arrived at the air-conditioned restaurant for lunch after the Baptism, Clare cooled off and quickly regained her energy and charmed everyone there.
Once we got back to the hotel, Shawn took Jamie and Clare swimming (they had been begging all day), so come bedtime, Clare was exhausted. She also does not eat well when she is out of her home environment. Despite all our coaxing, I think she only ate two slices of cheese and some M&M's all day. Tired and hungry, Clare refused to even eat the offered pop tart at bedtime (one of the only things we had to eat in our hotel room at 9pm that Clare could actually manage) and melted down instead. She finally feel asleep exhausted, but woke up continuously in the night crying. Part of the time, she was not even awake, so Shawn and I alternately rubbed her back until she fell asleep again. One time, she was awake and that is when she told me that her left arm hurt. She had her pajama sleeve pushed up past her elbow on that arm (she does not like her sleeves pushed up, so this is unusual behavior for her) and kept complaining that it hurt. I felt her fistula and it was thrumming rapidly. I did not know what else to do, so I gave her some Tylenol and sat with her for a long time, stroking her head, until she eventually settled down and fell asleep again. I think that was around 2am. Now it is almost 7am, and she is still sleeping.
After that initial phone call on Thursday to schedule Clare's procedure, we have not heard back from Children's Hospital yet with more information on what the "procedure" entails. We are journeying home today, so I am planning on calling the nurse tomorrow who we dealt with while we were down there a couple weeks ago and demand some answers!
Thursday, April 23, 2009
I Scream But It Only Comes Out As A Yawn
Children's Hospital called today to schedule Clare's "procedure." However, the woman on the phone had no details beyond that. She had no idea what procedure, what anesthesia process, anything about what the doctors had decided. Shawn explained that we were not scheduling any procedure until we had some information about what exactly was going to happen to Clare. So we're still just waiting some more.
Jamie's allergies, true to form, have now kicked in full-force. He is back to red, swollen, itchy eyes, congestion, cough, headaches, and a general grumpy attitude. The allergist put him on a course of steroids, which Jamie started yesterday. No improvement yet, but the steroids are supposed to wipe out all his allergy symptoms in a day or two.
We are packing up to head down to Philadelphia for a few days for my niece's Baptism. Jamie and Clare are on school break next week, and we're all looking forward to a week free of driving and full of playdates!
Jamie's allergies, true to form, have now kicked in full-force. He is back to red, swollen, itchy eyes, congestion, cough, headaches, and a general grumpy attitude. The allergist put him on a course of steroids, which Jamie started yesterday. No improvement yet, but the steroids are supposed to wipe out all his allergy symptoms in a day or two.
We are packing up to head down to Philadelphia for a few days for my niece's Baptism. Jamie and Clare are on school break next week, and we're all looking forward to a week free of driving and full of playdates!
Friday, April 17, 2009
Still Need A Plan
Clare saw the interventional radiologist today. He definitely ruled out compression as a means of closing the fistula given the position of the fistula and the number of vessels involved. So that leaves us either surgery by the cardiovascular surgeon or the radiologist can insert a coil to close the opening (in a method similar to the cath procedures). Both require general anesthesia, so the anesthesia risks are the same regardless of which method Clare undergoes. The radiologist is going to conference with the surgeon and anesthesiologist again and determine what is the best plan for Clare. We want to make this a one-shot deal, so Clare does not have to undergo anesthesia twice. Today's visit does not tell us anything new, so we're still just waiting to find out what the plan is and when it is going to happen.
Thursday, April 16, 2009
I Love My Kids
Today's words of wisdom:
Simon (as I am changing his diaper): "See you later, poop! Have fun!"
Jamie (after we get in the car from going to the gym): "Whew! I am so glad we went to the gym today. I needed the exercise." (Note - he plays in the play room while I exercise.)
Simon (as I am changing his diaper): "See you later, poop! Have fun!"
Jamie (after we get in the car from going to the gym): "Whew! I am so glad we went to the gym today. I needed the exercise." (Note - he plays in the play room while I exercise.)
Wednesday, April 15, 2009
Easter Photos
My absolute favorite photo from Easter - the pure joy on Clare's face as she goofs off with her Uncle Brian is priceless.
Violet's first Easter - she was adorable in her dress!
Simon's favorite part of Easter dinner was dessert. Grand Dad helps him eat some (not that Simon needs any help in that area!).
Jamie was the king egg hunter again.
Clare finds an egg hidden in the daffodil. (Yes, folks, we only had one daffodil bloom this year.)
This was Simon's first "real" year egg hunting, and he loved it. "More eggs? More eggs?"
Jamie displays his find.
Simon wanted no part of taking Easter photos this year. At least Jamie, Clare, and Violet smiled!
Violet checking out her first Easter basket.
Another Appointment
The next step is Clare has another appointment at Children's Hospital with the interventional radiologist on Friday. He wants to see Clare in person and do another ultrasound of her wrist before proceeding any further with a treatment plan.
As if that isn't enough, Jamie had his six-month dental cleaning this morning (always fun with the gang!). Six months ago, his teeth were beautiful. Now they are riddled with cavities. The hygienist was plying me with questions about Jamie's diet and brushing habits. Other than upping a bunch of his meds, nothing has changed, so I don't know why he suddenly has all these cavities. Leave me alone, lady - I do the best I can! Then she started losing her patience with Jamie because she wanted to get an x-ray and the film was too big for his mouth. The poor kid was trying to follow her directions, but we all know how hard it is to do dental x-rays. How can you expect a 6-year old to not gag when you stuff this huge thing in his mouth that is designed for an adult? I personally like my dentist, but the office is not equipped to handle children. (One of the reasons why we switched Clare to a pediatric dentist, but Jamie had not had an issue with our family dentist. Yet.) So I have an appointment scheduled for him with the pediatric dentist to do an exam. Jamie will most likely need several restorations done under sedation in the near future. Sigh.
As if that isn't enough, Jamie had his six-month dental cleaning this morning (always fun with the gang!). Six months ago, his teeth were beautiful. Now they are riddled with cavities. The hygienist was plying me with questions about Jamie's diet and brushing habits. Other than upping a bunch of his meds, nothing has changed, so I don't know why he suddenly has all these cavities. Leave me alone, lady - I do the best I can! Then she started losing her patience with Jamie because she wanted to get an x-ray and the film was too big for his mouth. The poor kid was trying to follow her directions, but we all know how hard it is to do dental x-rays. How can you expect a 6-year old to not gag when you stuff this huge thing in his mouth that is designed for an adult? I personally like my dentist, but the office is not equipped to handle children. (One of the reasons why we switched Clare to a pediatric dentist, but Jamie had not had an issue with our family dentist. Yet.) So I have an appointment scheduled for him with the pediatric dentist to do an exam. Jamie will most likely need several restorations done under sedation in the near future. Sigh.
Tuesday, April 14, 2009
And It Just Goes On And On
Now that we are home, and I am lounging in bed with four kids asleep, a piece of chocolate cream pie, and American Idol (even though I am not fond of Quentin Tarentino), the day does not seem quite as long, but it was still a pretty long day.
We spent five hours at Children's Hospital this afternoon for Clare's evaluation of her wrist. She had an ultrasound first. After the tech did her stuff, she wanted to call in a radiologist to take a look at the results. The radiologist informed us that there was indeed an aneurysm in Clare's left wrist. After about an hour and a half of these two women intently studying the ultrasound of Clare's arm, they determined that Clare had an aneurysm and a fistula. They were having some trouble figuring out which veins were involved, but eventually they obtained all the data they needed and sent us on our way.
Next stop was cardiology where we waited for the surgeon to see us. He didn't do anything hands-on with Clare other then feel the site. He explained to us that it was actually rare now to need to do surgery on a fistula. An interventional radiologist (never heard of this occupation before) could use ultrasound and apply compression to the site of the fistula. With the right amount of compression, the fistula would clot on its own and repair itself. Now the fistula would most likely require 1-2 hours of compression for that to happen, so Clare would have to be sedated for the procedure. If that did not work, we would have a plan B, which may be surgery. We asked the surgeon what the fistula meant heart-wise. He said there was definitely increased turbulent blood flow in Clare's left arm as opposed to her right. Arteries are bigger than veins and carry the blood away from the heart. Since there is an opening between the artery and vein, the blood flow is abnormal, which makes Clare's heart work harder. Right now, the fistula is relatively small, but that he wanted this taken care of within the next couple weeks because if the fistula becomes bigger, then Clare's heart will be working that much harder. The surgeon wanted the interventional radiologist to review the ultrasound findings. We met with the nurse practitioner of the cardiologist who oversees Clare's care at Children's. She told us to sit tight in the waiting room while the radiologist looked over the ultrasound, in case they wanted another peek at Clare before we left.
So after more time waiting and waiting, the nurse came back and informed us that one of the interventional radiologists reviewed the ultrasound. He did not feel that the fistula could be repaired by external compression. He wanted the lead interventional radiologist to take a look at the ultrasound, but that doctor was in the middle of a case. They also want a team of doctors on board because the fistula involves one artery and two veins, the position of the fistula in her wrist, and the fact that Clare has Williams syndrome and all the risks associated with that. So the radiologist, cardiologist, anesthesiologist, and the vascular surgeon will discuss the options and what is best for Clare. As the nurse stated to us, this is a unique case. The nurse herself was unsure of what all the options were (surgery versus something else the interventional radiologist could do). Since there were not going to be answers today, she was able to send us on our way. She stated that there should be a plan to go over with us by the end of the week, and that Clare would most likely have something done within the next few weeks. So we have some answers, but still little clue as to what is happening next.
The surgeon did warn us to be mindful of Clare's wrist and that she could do some harm if she fell on that spot. The surgeon said that the area could be painful to Clare because the blood vessels were distended there and there is that thrill you can feel beneath the skin. Shawn is going to have a chat with Clare's teacher and school nurse on Thursday about what's going on (we have been keeping Clare's teacher updated). On a normal day, Clare falls multiple times a day (like she had just fallen at school right before we picked her up this morning and one of her teeth had cut her bottom lip), so we're going to be as extra careful with Clare as we can. (Hard to do with a four-year old sometimes!)
*** After seeing Kerry's comment, I had to add this because, as much as I am whining about all the waiting we have to do with Clare's care, we absolutely are in good hands at Children's. As frustrating as it is to have to wait some more, I am always so thankful to have these amazing doctors so close by who take Williams syndrome seriously and the intricacies it imposes. Clare is not just a normal kid and nothing is routine when it comes to her care.
(And, off subject, the one piece of good news we received today was that all of Violet's thyroid tests came back normal.)
We spent five hours at Children's Hospital this afternoon for Clare's evaluation of her wrist. She had an ultrasound first. After the tech did her stuff, she wanted to call in a radiologist to take a look at the results. The radiologist informed us that there was indeed an aneurysm in Clare's left wrist. After about an hour and a half of these two women intently studying the ultrasound of Clare's arm, they determined that Clare had an aneurysm and a fistula. They were having some trouble figuring out which veins were involved, but eventually they obtained all the data they needed and sent us on our way.
Next stop was cardiology where we waited for the surgeon to see us. He didn't do anything hands-on with Clare other then feel the site. He explained to us that it was actually rare now to need to do surgery on a fistula. An interventional radiologist (never heard of this occupation before) could use ultrasound and apply compression to the site of the fistula. With the right amount of compression, the fistula would clot on its own and repair itself. Now the fistula would most likely require 1-2 hours of compression for that to happen, so Clare would have to be sedated for the procedure. If that did not work, we would have a plan B, which may be surgery. We asked the surgeon what the fistula meant heart-wise. He said there was definitely increased turbulent blood flow in Clare's left arm as opposed to her right. Arteries are bigger than veins and carry the blood away from the heart. Since there is an opening between the artery and vein, the blood flow is abnormal, which makes Clare's heart work harder. Right now, the fistula is relatively small, but that he wanted this taken care of within the next couple weeks because if the fistula becomes bigger, then Clare's heart will be working that much harder. The surgeon wanted the interventional radiologist to review the ultrasound findings. We met with the nurse practitioner of the cardiologist who oversees Clare's care at Children's. She told us to sit tight in the waiting room while the radiologist looked over the ultrasound, in case they wanted another peek at Clare before we left.
So after more time waiting and waiting, the nurse came back and informed us that one of the interventional radiologists reviewed the ultrasound. He did not feel that the fistula could be repaired by external compression. He wanted the lead interventional radiologist to take a look at the ultrasound, but that doctor was in the middle of a case. They also want a team of doctors on board because the fistula involves one artery and two veins, the position of the fistula in her wrist, and the fact that Clare has Williams syndrome and all the risks associated with that. So the radiologist, cardiologist, anesthesiologist, and the vascular surgeon will discuss the options and what is best for Clare. As the nurse stated to us, this is a unique case. The nurse herself was unsure of what all the options were (surgery versus something else the interventional radiologist could do). Since there were not going to be answers today, she was able to send us on our way. She stated that there should be a plan to go over with us by the end of the week, and that Clare would most likely have something done within the next few weeks. So we have some answers, but still little clue as to what is happening next.
The surgeon did warn us to be mindful of Clare's wrist and that she could do some harm if she fell on that spot. The surgeon said that the area could be painful to Clare because the blood vessels were distended there and there is that thrill you can feel beneath the skin. Shawn is going to have a chat with Clare's teacher and school nurse on Thursday about what's going on (we have been keeping Clare's teacher updated). On a normal day, Clare falls multiple times a day (like she had just fallen at school right before we picked her up this morning and one of her teeth had cut her bottom lip), so we're going to be as extra careful with Clare as we can. (Hard to do with a four-year old sometimes!)
*** After seeing Kerry's comment, I had to add this because, as much as I am whining about all the waiting we have to do with Clare's care, we absolutely are in good hands at Children's. As frustrating as it is to have to wait some more, I am always so thankful to have these amazing doctors so close by who take Williams syndrome seriously and the intricacies it imposes. Clare is not just a normal kid and nothing is routine when it comes to her care.
(And, off subject, the one piece of good news we received today was that all of Violet's thyroid tests came back normal.)
Sunday, April 12, 2009
Happy Easter!
From all the little bunnies at our house! Happy Easter!
(Taking photos with four children and having everyone looking at the camera.... yeah, pretty much impossible!)
Thursday, April 09, 2009
And Yet More...
I received a call from the cardiovascular surgeon's office today, scheduling an appointment for next week. The cardio from our office here was true to his word and made the call right away to set up an appointment with the surgeon. (Usually things don't happen this fast in the world of medicine, if you've ever been in our shoes!)
The surgeon wants to evaluate Clare next week, so we have an appointment scheduled for Tuesday afternoon at Children's Hospital. She will have an ultrasound done on her wrist and we will meet with the surgeon. That's all the news for now!
The surgeon wants to evaluate Clare next week, so we have an appointment scheduled for Tuesday afternoon at Children's Hospital. She will have an ultrasound done on her wrist and we will meet with the surgeon. That's all the news for now!
Wednesday, April 08, 2009
Continuation
Over the weekend, Clare's right arm behaved itself, but she frequently complained that her left hand hurt. When we asked where it hurt, she pointed right at the location of her fistula in her left wrist. She was still complaining of the pain on Monday, so I called her cardiologist's office. When the office finally called me back on Tuesday, it was not Clare's cardio but another one from the practice (one we have never met, but spoken with a few times on the phone over the past four years). He apologized for the delay, explaining that Clare's doctor was on vacation, and he had ordered copies of the ER reports to bring him completely up to speed before he talked to us. After quizzing me on various things regarding Clare's fistula, he asked us to come into the office right away so he could check it out himself. He gave me the impression that he did not think Clare's doctor had fully evaluated the fistula and that it needed to be taken care of sooner rather than later (which was what Clare's doctor had suggested - a wait and see approach). Of course, this always happens at 4:30pm - the kids are all hungry and whiny, dinner is in the oven, and Shawn is not home yet. So dinner was turned off, all four children nicely cooperated with getting their shoes and jackets on and back in the car, and Shawn was only 20 minutes away. (We ended up arriving at the doctor's office almost at the same time since herding four kids in and out of the car takes a little time.)
After examining Clare, asking lots of questions, and listening intently to Clare's wrist, the doctor
stated that he believes an aneurysm has formed at the site. (The ultrasound at the hospital did not ultrasound past Clare's lower arm, so there is no ultrasound of the site itself.) This is not life-threatening, but definitely should be dealt with. It has only been a week since the vessel problem was diagnosed, and it has progressed fairly quickly over that week. He thanked us for coming right in, explaining that he did not want to start referring Clare out to other doctors when he himself had never even met her. He was going to put in a call to Clare's cardiac surgeon down at Children's and expects we will at least speak with the surgeon's office before the end of the week. Clare will probably have an appointment with the surgeon so he can take a look at the problem himself and discuss where to go from here. The cardiologist believes it would be a fairly simple surgery if Clare has a fistula. I think it would be more complex if it is an aneurysm. Since the vessels are near the skin, the surgeon can most likely make an incision in Clare's wrist and go from there. We now have lots of new questions about what's going on!
After examining Clare, asking lots of questions, and listening intently to Clare's wrist, the doctor
stated that he believes an aneurysm has formed at the site. (The ultrasound at the hospital did not ultrasound past Clare's lower arm, so there is no ultrasound of the site itself.) This is not life-threatening, but definitely should be dealt with. It has only been a week since the vessel problem was diagnosed, and it has progressed fairly quickly over that week. He thanked us for coming right in, explaining that he did not want to start referring Clare out to other doctors when he himself had never even met her. He was going to put in a call to Clare's cardiac surgeon down at Children's and expects we will at least speak with the surgeon's office before the end of the week. Clare will probably have an appointment with the surgeon so he can take a look at the problem himself and discuss where to go from here. The cardiologist believes it would be a fairly simple surgery if Clare has a fistula. I think it would be more complex if it is an aneurysm. Since the vessels are near the skin, the surgeon can most likely make an incision in Clare's wrist and go from there. We now have lots of new questions about what's going on!
Saturday, April 04, 2009
Start Walking!
We are participating in the American Heart Walk this year. Eons ago, before I had children and had a job outside the home, Shawn and I participated in the American Heart Walk every year with my company. Little did I know then that, in the future, I would have a personal interest in this event. Over the last few years, we have chosen to walk for Easter Seals since they were providing such outstanding service to Clare, at no expense to us. Since Clare no longer receives any services through Easter Seals, we have chosen to do the Heart Walk instead this year. We have a web page on the Heart Walk website if you are interested in making a donation in honor of Clare. Thank you!
Donate in Honor of Clare Bear
Donate in Honor of Clare Bear
Friday, April 03, 2009
Curiosity
After a long couple of days focused almost solely on Clare and her health, it's nice to muse about the perks of being a mother. One of the things I love about Jamie's age is his curiosity. I don't know if all 6-year olds are like this, but there are days when Jamie's curiosity is insatiable. The other day, we had a deep discussion on the way to school after Jamie asked whether Jesus was around during the time of the dinosaurs. This naturally led into an explanation of the Holy Trinity (awkward and inadequate on my part, inquisitive on his). As in, no, Jesus was not around physically on earth when the dinosaurs were around, but, yes, God was in existence; and how God and Jesus are the same, yet not the same. (Okay, where are Jamie's godparents when you need them? I really need to find a book about explaining the mysteries of our faith to a 6-year old.) I admit I pulled out the old analogy of relating the Trinity to a shamrock - which Jamie grasped fairly well since he had just had his St. Patrick's Day party at school a couple weeks ago.
When he's not asking question after question about the world around him, Jamie also loves his new skills of reading and writing. He carries a notebook and pen around with him to copy anything and everything he sees. He especially loves to do this in the car, so when we get home and I read his notebook, he has quite an eclectic collection of phrases! In school this past month, his class has been learning about outer space. All of their reading, writing, and math activities are focused on the solar system. Every day, we learn new facts about the planets as Jamie learns them. And his memory is incredible. Today Jamie enlightened me about the meaning of the word "year" (as in how many days it takes a planet to complete its orbit around the sun) and which planets had long years and which had short years. He knows how many moons each planet has, what the air is like on Mars, and how no one has ever seen the side of Mercury that faces the sun because it is too hot for anything to go near to take a photo. It is so refreshing to see life through his eyes and what amazement and wonder he has for the world we live in and how it works. I just wish this lovely planet was a little kinder to him sometimes!
Jamie has been fighting more allergy attacks since about January. We finally had our second long-awaited appointment with the allergist at the beginning of the week. I filled the doctor in on how we had taken Jamie off the Zyrtec in November (per the doctor's orders) and tried getting through the winter on just two of his allergy meds. Come January, however, Jamie's allergies kicked back in, so we restarted the Zyrtec. Since where we live was covered in snow and ice during this time, the likely source of Jamie's allergy symptoms were the dust and cats in our house. (And although my housekeeping would not necessarily win any awards, I do dust, vacuum, and clean frequently!) The allergist is a little concerned that Jamie could not survive the winter without being on all his allergy medications since that does not bode well for what will happen when the pollen season is in full force (Jamie being most allergic to trees and grass). Ideally, winter is a time to skate by on minimal meds, so the arsenal can be built up come spring and ready for the attack. Unfortunately, Jamie headed in the opposite direction. We again discussed allergy shots, but the doctor believes we are still at an acceptable level of medication without shots being necessary. The doctor did question me on whether I was okay with the number of doses I had to dispense each day. I did not even crack a smile when I assured him I was on board - after all, what's six more doses when you're already doling out eight to Clare? Sometimes I feel like I'm my own little pharmacy. My kitchen counter has quite a prominent space carved out for our morning meds.
So the plan with Jamie's allergies is to bump up his Zyrtec, add a fourth medication, and use eye drops as well if needed. Sort of like getting ready for battle by storing up extra ammunition. When the pollen season hits, if Jamie's symptoms become out-of-control like they did last spring, the allergist will put Jamie on a short run of steroids to wipe out the allergies. However, if Jamie ends up needing more than 2-3 courses of steroids over the next year, then allergy shots would be the next step. I have been warned that, due to the severity of his allergies at such a young age, allergy shots are most likely sometime in the near future. As long as Jamie is reasonably symptom-free, I want to see how long we can hold that off.
When he's not asking question after question about the world around him, Jamie also loves his new skills of reading and writing. He carries a notebook and pen around with him to copy anything and everything he sees. He especially loves to do this in the car, so when we get home and I read his notebook, he has quite an eclectic collection of phrases! In school this past month, his class has been learning about outer space. All of their reading, writing, and math activities are focused on the solar system. Every day, we learn new facts about the planets as Jamie learns them. And his memory is incredible. Today Jamie enlightened me about the meaning of the word "year" (as in how many days it takes a planet to complete its orbit around the sun) and which planets had long years and which had short years. He knows how many moons each planet has, what the air is like on Mars, and how no one has ever seen the side of Mercury that faces the sun because it is too hot for anything to go near to take a photo. It is so refreshing to see life through his eyes and what amazement and wonder he has for the world we live in and how it works. I just wish this lovely planet was a little kinder to him sometimes!
Jamie has been fighting more allergy attacks since about January. We finally had our second long-awaited appointment with the allergist at the beginning of the week. I filled the doctor in on how we had taken Jamie off the Zyrtec in November (per the doctor's orders) and tried getting through the winter on just two of his allergy meds. Come January, however, Jamie's allergies kicked back in, so we restarted the Zyrtec. Since where we live was covered in snow and ice during this time, the likely source of Jamie's allergy symptoms were the dust and cats in our house. (And although my housekeeping would not necessarily win any awards, I do dust, vacuum, and clean frequently!) The allergist is a little concerned that Jamie could not survive the winter without being on all his allergy medications since that does not bode well for what will happen when the pollen season is in full force (Jamie being most allergic to trees and grass). Ideally, winter is a time to skate by on minimal meds, so the arsenal can be built up come spring and ready for the attack. Unfortunately, Jamie headed in the opposite direction. We again discussed allergy shots, but the doctor believes we are still at an acceptable level of medication without shots being necessary. The doctor did question me on whether I was okay with the number of doses I had to dispense each day. I did not even crack a smile when I assured him I was on board - after all, what's six more doses when you're already doling out eight to Clare? Sometimes I feel like I'm my own little pharmacy. My kitchen counter has quite a prominent space carved out for our morning meds.
So the plan with Jamie's allergies is to bump up his Zyrtec, add a fourth medication, and use eye drops as well if needed. Sort of like getting ready for battle by storing up extra ammunition. When the pollen season hits, if Jamie's symptoms become out-of-control like they did last spring, the allergist will put Jamie on a short run of steroids to wipe out the allergies. However, if Jamie ends up needing more than 2-3 courses of steroids over the next year, then allergy shots would be the next step. I have been warned that, due to the severity of his allergies at such a young age, allergy shots are most likely sometime in the near future. As long as Jamie is reasonably symptom-free, I want to see how long we can hold that off.
48 Hours
It's been a long two days on pins and needles.
Clare went in for an echo and visit with her cardiologist today. Her echo looked great. There is no change in the narrowing in her pulmonary arteries and aorta. Everything looks beautiful, and she does not need another echo for six more months. We may even be at a point where Clare is outgrowing her stenoses. That is great news but it still does not explain her right arm issues.
So we are at a number of theories right now:
1) Clare has developed an arteriovenous fistula in her left wrist (this is a fact not a theory!). An AV fistula is an abnormal passageway between an artery and a vein. Normally, your blood flows from arteries through capillaries and back to your heart in veins. When an AV fistula is present, blood flows directly from an artery into a vein, bypassing the capillaries. If the volume of diverted blood flow is large, tissues downstream receive less blood supply. Clare most likely developed the fistula as a result of her open heart surgery 3 1/2 years ago, when an arterial line was placed directly into the artery in her left wrist to take blood pressure measurements. Now the fistula is at a point where you can actually feel it vibrating when you hold Clare's left wrist (it is very strange to feel - like a little vibrator was inserted under her skin). One of the theories is that the fistula is "stealing" blood and so there is a decreased blood flow to Clare's other arm - the right arm which was the arm in question the last two nights. Clare's cardio took blood pressure measurements of both Clare's arms and of the fistula itself. All the measurements were consistent (about 99/60 range), so the fistula should not be a problem right now. If it becomes an issue in the future, then it can be surgically repaired.
2) Clare is experiencing Raynaud's Phenomenon (this is a theory). Skin discoloration and decreased temperature occurs because an abnormal spasm of the blood vessels causes a diminished blood supply to the local tissues. It often occurs after being exposed to cold - both nights it happened immediately after Clare returned inside from playing outside in the semi-chilly evening air. This phenomenon can be present by itself or be a symptom of an autoimmune disease. Clare has congenital hypothyroidism, which is considered an autoimmune disorder. There are other disorders as well that can present with this symptom, but there would be more tests and doctor's visits in the future to see what's what. Also, Clare's blood pressure medication, Propranalol, can cause these blood vessel spasms. Our plan for now is to keep an eye on it, and bring it up with her pediatrician at her annual physical in a couple weeks. If it is a symptom of another disorder, then the pediatrician is our route right now, not the cardiologist.
3) I am ecstatic to say that Theory #3, a blood clot, has now been officially ruled out. Clare's cardio looked at her blood draw numbers from Wednesday night at the ER and realized that the ER doc was comparing the numbers to those of an adult patient (gotta love the local ER!). So she wanted to compare them against a pediatric patient (duh) and re-run the tests today. After Clare's traumatic blood draw experience at the ER, she flipped out the minute we walked into the lab at the doctor's office this afternoon. I loathe putting Clare through that (especially since the whole time, she is sitting on my lap, screaming "Help me, Mama"), but her numbers today were normal. So no clots!
The only really bad news today was that Clare's cardio is leaving the practice and moving further south. We have always had a great relationship with Clare's doctor, and I feel like she truly knows Clare inside and out. We did meet the cardiologist who will be taking charge of Clare's care. He is an interventional cardiologist at Children's Hospital at Dartmouth, which means he can actually perform cath procedures. So she is still in good hands, but I am not eager to have to build a new relationship with one of the most important people in Clare's life (health-wise, that is).
A huge weight has been lifted off my chest that Clare's heart is not the cause of what's been going on the last couple of days. We still do not have THE answer, but at least we have some direction now. And peace of mind.
Clare went in for an echo and visit with her cardiologist today. Her echo looked great. There is no change in the narrowing in her pulmonary arteries and aorta. Everything looks beautiful, and she does not need another echo for six more months. We may even be at a point where Clare is outgrowing her stenoses. That is great news but it still does not explain her right arm issues.
So we are at a number of theories right now:
1) Clare has developed an arteriovenous fistula in her left wrist (this is a fact not a theory!). An AV fistula is an abnormal passageway between an artery and a vein. Normally, your blood flows from arteries through capillaries and back to your heart in veins. When an AV fistula is present, blood flows directly from an artery into a vein, bypassing the capillaries. If the volume of diverted blood flow is large, tissues downstream receive less blood supply. Clare most likely developed the fistula as a result of her open heart surgery 3 1/2 years ago, when an arterial line was placed directly into the artery in her left wrist to take blood pressure measurements. Now the fistula is at a point where you can actually feel it vibrating when you hold Clare's left wrist (it is very strange to feel - like a little vibrator was inserted under her skin). One of the theories is that the fistula is "stealing" blood and so there is a decreased blood flow to Clare's other arm - the right arm which was the arm in question the last two nights. Clare's cardio took blood pressure measurements of both Clare's arms and of the fistula itself. All the measurements were consistent (about 99/60 range), so the fistula should not be a problem right now. If it becomes an issue in the future, then it can be surgically repaired.
2) Clare is experiencing Raynaud's Phenomenon (this is a theory). Skin discoloration and decreased temperature occurs because an abnormal spasm of the blood vessels causes a diminished blood supply to the local tissues. It often occurs after being exposed to cold - both nights it happened immediately after Clare returned inside from playing outside in the semi-chilly evening air. This phenomenon can be present by itself or be a symptom of an autoimmune disease. Clare has congenital hypothyroidism, which is considered an autoimmune disorder. There are other disorders as well that can present with this symptom, but there would be more tests and doctor's visits in the future to see what's what. Also, Clare's blood pressure medication, Propranalol, can cause these blood vessel spasms. Our plan for now is to keep an eye on it, and bring it up with her pediatrician at her annual physical in a couple weeks. If it is a symptom of another disorder, then the pediatrician is our route right now, not the cardiologist.
3) I am ecstatic to say that Theory #3, a blood clot, has now been officially ruled out. Clare's cardio looked at her blood draw numbers from Wednesday night at the ER and realized that the ER doc was comparing the numbers to those of an adult patient (gotta love the local ER!). So she wanted to compare them against a pediatric patient (duh) and re-run the tests today. After Clare's traumatic blood draw experience at the ER, she flipped out the minute we walked into the lab at the doctor's office this afternoon. I loathe putting Clare through that (especially since the whole time, she is sitting on my lap, screaming "Help me, Mama"), but her numbers today were normal. So no clots!
The only really bad news today was that Clare's cardio is leaving the practice and moving further south. We have always had a great relationship with Clare's doctor, and I feel like she truly knows Clare inside and out. We did meet the cardiologist who will be taking charge of Clare's care. He is an interventional cardiologist at Children's Hospital at Dartmouth, which means he can actually perform cath procedures. So she is still in good hands, but I am not eager to have to build a new relationship with one of the most important people in Clare's life (health-wise, that is).
A huge weight has been lifted off my chest that Clare's heart is not the cause of what's been going on the last couple of days. We still do not have THE answer, but at least we have some direction now. And peace of mind.
Thursday, April 02, 2009
It Must Be April
Yesterday was April 1, and, true to form, Clare landed in the ER.
It started in the morning when she did not want to eat breakfast. She did not have school yesterday (as it is her one day off), but had a dentist appointment in the morning. I gave her the dose of amoxicillin she needs to take prior to any dental work. Antibiotics always give Clare diarrhea, so I knew that was coming. She did great during the appointment (with minimal crying), but refused to eat lunch as well (and it was a treat - Burger King lunch complete with chocolate milk, her favorite). I chalked it up to the fact that maybe she had an upset stomach from the antibiotics, but could not coax her to eat anything. We were at a Burger King with a play place and, towards the end, she was just laying on one of the mats inside the tunnel structure, not moving. Again, I thought maybe she was just tired from a morning of running around, so we dropped Jamie off at school and headed home. Since Simon and Violet were napping, Clare and I laid on my bed and rested as well (as I've said before, the girl refuses to nap!). She kept saying she didn't feel good, and I asked her where her boo boo was. She said her hands hurt, which I thought was funny. She still would not eat anything, but Clare has been up and down with the virus we've all had plus I still thought her stomach might be upset from the morning's medication (excusing the bad mommy who didn't listen to her daughter!). And I am never sure when we ask Clare where it hurts, if she truly is capable of telling us yet.
Come dinner time, Clare still was not eating and complained again that her hand hurt. When I felt her right hand, it was ice cold. The kids had been playing outside prior to dinner (and it was a tad chilly), so I felt her left hand. The left hand and arm were nice and warm. I felt Clare's right hand and arm again, and they were freezing. That's when we started to get worried. We called her cardiologist who did not like the sound of that at all. She instructed us to take Clare to the local ER immediately and tell them to doppler her arm for a blood clot. Of course, that totally freaked us out! Shawn took Clare right over, and I had the fun job of waiting at home with the other kids. I truly don't know what is worse - being the parent uncomfortable (and without dinner) at the ER for hours on end with a sick child or the one waiting at home, comfortable but with no clue what was going on and keeping a brave face on for the sake of the other children.
Shawn and Clare were at the ER past midnight. The ER staff also noted the drastic temperature difference between Clare's arms. The nurse was able to pinpoint in Clare's right arm where the temperature changed. The ultrasound, however, did not find any sign of a clot in her arms, so Clare's cardiologist wanted the ER doc to take blood pressure measurements on all four extremities and run some blood work. The blood pressure measurements were in a good range for Clare, so that was good. However, the blood work did show abnormalities in Clare's blood clotting factors. Even though they found no actual clot on the doppler, something is not right in Clare's body right now. Clare's cardiologist talked to a vascular surgeon about Clare's blood work results. The ER had already run all the diagnostic tests that the vascular surgeon recommended. The cardio wanted to discuss Clare more with her colleagues at Children's Hospital in Lebanon (the children's hospital affiliated with our cardiology practice), so she discharged Clare for the night with the order to call her office this morning.
After a very late night, Clare woke up for about an hour this morning, then went back to sleep for a while. I have spoken with Clare's cardiologist this morning. She is not comfortable with the results of Clare's bloodwork, especially given that, with Williams syndrome, clots can develop easily. Clare's arm and hand feel better this morning, but she still does not feel good and is very tired. Clare also still is not eating or drinking much, but we really have to push the fluids since hydration is extremely important in keeping Clare's blood vessels in good shape. So now we're in the waiting game. Clare's cardio put a call into the cardiologist at Boston Children's Hospital, and we are waiting to hear what the game plan is. I hate the waiting part of this. I just want some answers. It drives me up the wall to sit here outwardly calm, while inside I am so agitated. Shawn is upstairs with Clare and Violet (Clare is awake again, but complaining of being tired), and I am downstairs with Jamie and Simon (who are coloring while I type).
I think the only certain thing today, though, is that it looks like Clare's tongue surgery may be cancelled once again.
It started in the morning when she did not want to eat breakfast. She did not have school yesterday (as it is her one day off), but had a dentist appointment in the morning. I gave her the dose of amoxicillin she needs to take prior to any dental work. Antibiotics always give Clare diarrhea, so I knew that was coming. She did great during the appointment (with minimal crying), but refused to eat lunch as well (and it was a treat - Burger King lunch complete with chocolate milk, her favorite). I chalked it up to the fact that maybe she had an upset stomach from the antibiotics, but could not coax her to eat anything. We were at a Burger King with a play place and, towards the end, she was just laying on one of the mats inside the tunnel structure, not moving. Again, I thought maybe she was just tired from a morning of running around, so we dropped Jamie off at school and headed home. Since Simon and Violet were napping, Clare and I laid on my bed and rested as well (as I've said before, the girl refuses to nap!). She kept saying she didn't feel good, and I asked her where her boo boo was. She said her hands hurt, which I thought was funny. She still would not eat anything, but Clare has been up and down with the virus we've all had plus I still thought her stomach might be upset from the morning's medication (excusing the bad mommy who didn't listen to her daughter!). And I am never sure when we ask Clare where it hurts, if she truly is capable of telling us yet.
Come dinner time, Clare still was not eating and complained again that her hand hurt. When I felt her right hand, it was ice cold. The kids had been playing outside prior to dinner (and it was a tad chilly), so I felt her left hand. The left hand and arm were nice and warm. I felt Clare's right hand and arm again, and they were freezing. That's when we started to get worried. We called her cardiologist who did not like the sound of that at all. She instructed us to take Clare to the local ER immediately and tell them to doppler her arm for a blood clot. Of course, that totally freaked us out! Shawn took Clare right over, and I had the fun job of waiting at home with the other kids. I truly don't know what is worse - being the parent uncomfortable (and without dinner) at the ER for hours on end with a sick child or the one waiting at home, comfortable but with no clue what was going on and keeping a brave face on for the sake of the other children.
Shawn and Clare were at the ER past midnight. The ER staff also noted the drastic temperature difference between Clare's arms. The nurse was able to pinpoint in Clare's right arm where the temperature changed. The ultrasound, however, did not find any sign of a clot in her arms, so Clare's cardiologist wanted the ER doc to take blood pressure measurements on all four extremities and run some blood work. The blood pressure measurements were in a good range for Clare, so that was good. However, the blood work did show abnormalities in Clare's blood clotting factors. Even though they found no actual clot on the doppler, something is not right in Clare's body right now. Clare's cardiologist talked to a vascular surgeon about Clare's blood work results. The ER had already run all the diagnostic tests that the vascular surgeon recommended. The cardio wanted to discuss Clare more with her colleagues at Children's Hospital in Lebanon (the children's hospital affiliated with our cardiology practice), so she discharged Clare for the night with the order to call her office this morning.
After a very late night, Clare woke up for about an hour this morning, then went back to sleep for a while. I have spoken with Clare's cardiologist this morning. She is not comfortable with the results of Clare's bloodwork, especially given that, with Williams syndrome, clots can develop easily. Clare's arm and hand feel better this morning, but she still does not feel good and is very tired. Clare also still is not eating or drinking much, but we really have to push the fluids since hydration is extremely important in keeping Clare's blood vessels in good shape. So now we're in the waiting game. Clare's cardio put a call into the cardiologist at Boston Children's Hospital, and we are waiting to hear what the game plan is. I hate the waiting part of this. I just want some answers. It drives me up the wall to sit here outwardly calm, while inside I am so agitated. Shawn is upstairs with Clare and Violet (Clare is awake again, but complaining of being tired), and I am downstairs with Jamie and Simon (who are coloring while I type).
I think the only certain thing today, though, is that it looks like Clare's tongue surgery may be cancelled once again.
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