2 things:
What I think is important:
Will's first procedure was rescheduled to Feb. 2nd. This gave us time for more blood work to be done. He seems to clot slowly (in the test tube), so there were more tests done to see if it is a clotting factor deficiency or no big deal. I am hoping to hear back in the next day or so.
What Will thinks is important:
Whiskers the cat has been renamed Figaro, depending on the day. (Minnie Mouse has a cat that looks just like his named "Figaro".) So if you actually get to meet the cat that makes him brave, don't be surprised if Will changes its name in the middle of your conversation.
Tuesday, January 27, 2015
Wednesday, January 7, 2015
Whiskers
For those of you that don't know about Woof-Woof, this was given to Will when he was in the hospital by JT's boss. It is Will's best friend and companion. Woof-Woof has a major limitation though, he is as big as Will!
Therefore, I have never allowed Woof-Woof to be taken in anywhere (he can ride in the car, but must stay there). When Will is hurt, sad, happy, playing, sleeping, etc Woof-Woof is always by his side. With everything that Will is about to go through, I thought he needed his best buddy to tag along with him to keep him comforted. Woof-Woof is too big though, so I had a plan. I let Will pick out a "brave toy" to be a substitute for when Woof-Woof can't be there.
So everybody, meet Whiskers the kitty-cat.
I let him pick it out at the hospital gift shop at one of his last appointments. We go in there every time we have an appointment to say hi to Woof-Woof's family (3 sizes of them) - a "Woof-Woof", and "small Woof-Woof" and a "baby Woof" as Will calls them all. He always pets them and hugs on them. So my plan was to let him pick out something small that he could carry to all future appointments and procedures, because Woof-Woof is obviously way too big to be taken anywhere! We discussed why we were picking something out, and he immediately was set on "baby Woof". Fine by me, it is his choice on what he thinks will make him brave. Unfortunately they were out of stock, but Will found this cat and was instantly obsessed! He named it Whiskers and we took it with us to our blood work appointment that day. I can't say that it made him brave (since I had to hold him down along with another nurse), but it sure did make him happy telling anyone who would listen about his new friend. I wasn't sure how Whiskers would fit into our daily life once we got back to the car to Woof-Woof, but Will happily exclaimed that "Woof-Woof always wanted a kitty-cat", so it was love at first sight. Thank goodness! Whiskers, Woof-Woof, and Will are now a trio around the house - they do everything together!
So everybody, meet Whiskers the kitty-cat.
A Plan for Will
JT and I had decided before Thanksgiving that we needed a second opinion on Will's vascular malformation. He wasn't really having any problems except that we could just tell that the growth was more and more obvious. Online research led us to Children's Hospitals of Cincinnati and Boston. I called the pediatrician and he immediately started our referral to Cincinnati. Just a few hours later, we noticed blood in Will's bowel movements. That night, the right side of his scrotum looked red and inflamed and it was hurting him. Then he started limping on his right leg, especially after sitting for a while or getting up in the morning. The limp would get better throughout the day as he seemed to work through it. He doesn't sit well on his bottom ( and really he never has). This was something that I ignored because how can you tell that isn't just a 2-3 year old that doesn't want to sit still? His teachers and Hope have brought it up again - he usually ends up sitting on his knees if he is in a hard chair. This led to some frantic calls to Vanderbilt specialists that we have been seeing for some appointments.
The urologist thinks maybe he has hemangiomas in his genital and rectal area that get aggravated. This causes blood when he pees. As far as the pain and inflammation of scrotum, he probably was having come clotting in there. It got better within just a few days.
The general surgeon (Dr. Neblett) that we have been keeping up with was extremely thorough and got more people involved. We did blood work to make sure that he wasn't losing too much blood (everything was fine). I told him that we had contacted Cincinnati and were looking to go there. He understood and said it was definitely a place that he would recommend. I guess I was afraid to offend anyone by asking for a second opinion, but at the end of the day my first priority is Will, and everyone is on the same page and just wants to help Will. He set aside the rest of his morning to bring in a team of specialists to review all of Will's files to see if he could get us a plan at Vanderbilt so that we don't have to travel.
I finally got a call from Cincinnati to get the process started. The girl that I have been in contact with has been so helpful. After a few conversations, she asked me if I knew that Vanderbilt now had a hemangioma and vascular malformations team like they did. No, obviously I did not. She said that it was very new and probably connected to the regular hospital (instead of Children's Hospital), so many of the doctors probably weren't even aware of it. She gave me a name of Dr. Snyder that was part of the Vanderbilt team. Dr. Snyder had been at Cincinnati and remains in close contact with the doctors that we would be seeing there. I called Dr. Neblett and asked him about it, but he didn't really know much about this vascular team. He immediately got in touch with Dr. Snyder and had a consultation appointment set up for us 3 days later. Dr. Neblett spent time with JT and I explaining what he, Dr. Snyder, and Dr. Baron (radiologist) had discussed and a possible plan. He is letting Dr. Snyder take over here as far as planning procedures.
We met with Dr. Snyder, and it was like a breath of fresh air! I can't even begin to explain the relief of finding someone that has actually seen this before! See is a hematologist/oncologist, but will kind of be heading up all of the procedures and watching Will's blood work. An interventional radiologist will actually be performing the procedures. He also trained at Cincinnati.
The procedures are called sclerotherapy. (I'll post a link that you can get more information from.) These will be outpatient procedures, but Will is going to be under anesthesia. What I understand about this procedure in the simplest form is that a catheter is inserted in the vein, something is injected to see how the blood flows, and if the vein isn't crucial, another solution will be injected to clot off and shrink the vein. This will probably be painful for Will for a few days after while that clot is forming. He will be given pain medication if needed. This is not going to be taken care of all in 1 procedure. There will be multiple procedures, so JT and I think this is going to take at least a year. Our goal is to be done in time for him to start kindergarten.
These 2 websites get you to the main pages of vascular malformations. You can read about them and look at treatment tabs for more info. Will has a combined malformation of venous and lymphatic.
http://www.cincinnatichildrens.org/service/h/hemangioma/default/
http://www.childrenshospital.org/health-topics/conditions/v/vascular-malformations-tumors-and-hemangiomas
I am meeting with Dr. Snyder tomorrow to get more information. The first procedure is scheduled for Jan. 26th.
We are going to meet with the Cincinnati team March 10th. They are really good about making it possible to see all of the specialists at one time so we don't have to make multiple trips. That however puts us to March before we can do that. We decided to go ahead and get started with Vanderbilt because we don't want to be 6 months behind since this is going to be a lengthy process already.
Please keep Will in your prayers. He isn't in pain the majority of the time and hardly ever complains. He is a typical crazy 3 year old that runs and jumps around, plays soccer, plays with his baby sister and dog, annoys his baby sister and dog, and makes us smile all of the time! I'm going to keep this blog updated as much as possible so everyone can stay informed that wants to be.
The urologist thinks maybe he has hemangiomas in his genital and rectal area that get aggravated. This causes blood when he pees. As far as the pain and inflammation of scrotum, he probably was having come clotting in there. It got better within just a few days.
The general surgeon (Dr. Neblett) that we have been keeping up with was extremely thorough and got more people involved. We did blood work to make sure that he wasn't losing too much blood (everything was fine). I told him that we had contacted Cincinnati and were looking to go there. He understood and said it was definitely a place that he would recommend. I guess I was afraid to offend anyone by asking for a second opinion, but at the end of the day my first priority is Will, and everyone is on the same page and just wants to help Will. He set aside the rest of his morning to bring in a team of specialists to review all of Will's files to see if he could get us a plan at Vanderbilt so that we don't have to travel.
I finally got a call from Cincinnati to get the process started. The girl that I have been in contact with has been so helpful. After a few conversations, she asked me if I knew that Vanderbilt now had a hemangioma and vascular malformations team like they did. No, obviously I did not. She said that it was very new and probably connected to the regular hospital (instead of Children's Hospital), so many of the doctors probably weren't even aware of it. She gave me a name of Dr. Snyder that was part of the Vanderbilt team. Dr. Snyder had been at Cincinnati and remains in close contact with the doctors that we would be seeing there. I called Dr. Neblett and asked him about it, but he didn't really know much about this vascular team. He immediately got in touch with Dr. Snyder and had a consultation appointment set up for us 3 days later. Dr. Neblett spent time with JT and I explaining what he, Dr. Snyder, and Dr. Baron (radiologist) had discussed and a possible plan. He is letting Dr. Snyder take over here as far as planning procedures.
We met with Dr. Snyder, and it was like a breath of fresh air! I can't even begin to explain the relief of finding someone that has actually seen this before! See is a hematologist/oncologist, but will kind of be heading up all of the procedures and watching Will's blood work. An interventional radiologist will actually be performing the procedures. He also trained at Cincinnati.
The procedures are called sclerotherapy. (I'll post a link that you can get more information from.) These will be outpatient procedures, but Will is going to be under anesthesia. What I understand about this procedure in the simplest form is that a catheter is inserted in the vein, something is injected to see how the blood flows, and if the vein isn't crucial, another solution will be injected to clot off and shrink the vein. This will probably be painful for Will for a few days after while that clot is forming. He will be given pain medication if needed. This is not going to be taken care of all in 1 procedure. There will be multiple procedures, so JT and I think this is going to take at least a year. Our goal is to be done in time for him to start kindergarten.
These 2 websites get you to the main pages of vascular malformations. You can read about them and look at treatment tabs for more info. Will has a combined malformation of venous and lymphatic.
http://www.cincinnatichildrens.org/service/h/hemangioma/default/
http://www.childrenshospital.org/health-topics/conditions/v/vascular-malformations-tumors-and-hemangiomas
I am meeting with Dr. Snyder tomorrow to get more information. The first procedure is scheduled for Jan. 26th.
We are going to meet with the Cincinnati team March 10th. They are really good about making it possible to see all of the specialists at one time so we don't have to make multiple trips. That however puts us to March before we can do that. We decided to go ahead and get started with Vanderbilt because we don't want to be 6 months behind since this is going to be a lengthy process already.
Please keep Will in your prayers. He isn't in pain the majority of the time and hardly ever complains. He is a typical crazy 3 year old that runs and jumps around, plays soccer, plays with his baby sister and dog, annoys his baby sister and dog, and makes us smile all of the time! I'm going to keep this blog updated as much as possible so everyone can stay informed that wants to be.
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