Someone asked me today if I could be thankful for Will's illness. I have been asked if I was mad at God. I have been asked how I am handling it all. But I have never been asked if I was thankful.
The question came in context of a conversation regarding the stability of my family. Life is hard. Relationships on every level are struggling. My children are bickering like I have never seen. By nightfall, I am weary and ready for bedtime. Their bedtime. Billy works around the clock and isn't here. I am exhausted on every level.
So thankful for Will's illness...nope. Can't say that I am. Am I giving thanks in every circumstance? Hm. Again, nope. How are you thankful for something that seeps the life out of your child and slowly eats away at your family?
But the more I ponder it, the more I realize that the illness isn't what is eating away at my family. Sin is eating away at my family. Our own ugly hearts are doing a fine job of destruction.
When an area is ravaged with destruction, the fight for survival is immense. You hear stories of people trampling others to death in an effort to obtain food and water. In a family ravaged with destruction, the same thing happens. We are all so busy fighting to survive, that all we see is our own need. The other person's need is irrelevant.
So, the weariness certainly doesn't go away. The hopelessness that life will always be insanely difficult doesn't go away. The feeling of failure in training my children doesn't go away. The loneliness doesn't fade. But can I refocus on Christ and help my children see that, even in this, we rejoice and give thanks? Can I muster the energy to even try?
I honestly don't know. But I do know that with Christ, all things are possible and that helping my children realize that is worth whatever sacrifice is required. Do I believe God is big enough to transform my family? I believe, with my head, but Lord, help the unbelief of my very broken heart.
Monday, February 22, 2010
Port, PICC Line, Autonomic Dysfunction, Oh My!
Will is totally into whittling right now. Yes, I know that sharp knives can be dangerous in the hands of a 13 yo, but then, occasionally, a knife is dangerous in my hands...Of course, you might have read that wrong. What I meant to say is that I tend toward self destruction after Billy sharpens my knives, so he tends to delay the sharpening until I whine loudly. I can either cut the food with great effort, or I can cut me with little effort and bleed all over the food that is now easier to cut. :)
Anyway, Will wanted to know when our next doctor's appointment was...not because he wants to see yet another doctor, but because there is a woodworking store in Richmond that he desperately wants to visit. He has whittled all sorts of cool things recently, so he is looking for new tools with which to hone this new skill.
So, it looks like we may get that opportunity soon. The last few weeks Will has been reacting to the needle used in his infusions. With peripheral IV's (the ones they put in your arms or your hands), the needle is removed after a plastic catheter is placed in your vein. With Will's port, though, a 1/2 inch needle, called a Huber needle, remains in his port until the infusion ends. After 8 hours, I don sterile gloves and a mask and remove the needle. The only problem is, huber needles are made of stainless steel. Did I mention that Will is allergic to stainless steel?
So, after a few weeks of infusions with the port, Will started to complain of itching at the needle site. Then it actually got red right where the needle passed through the skin. That is when it hit me...um, from what exactly are these needles made? Oh, lovely. So, today, when I deaccessed the port, the entire area is red. In other words, the reaction is getting bigger and we can't locate a Huber needle that is not made of stainless steel...and so far I have called five manufacturers.
Tomorrow, I will continue my quest of locating a non-stainless Huber needle while Brooke, our amazing nurse, calls oncology physicians to see if anyone else has had this issue. Until we find another needle, we may have to return to peripheral IV's, which none of us want because finding a vein when he is down is really challenging and painful, and he has less mobility because he can't use his arm. And 8 hours is a long time to not use your arm. They are also discussing putting in a PICC line instead of using the port, but that has loads of other issues...like he couldn't swim and the risk of infection is greater...and it would be in his upper arm which would be very visible...Not something a 13 yo would readily accept.
So this is lining up to be one of THOSE weeks...we may have to go to twice a week infusions (each six hours long) to control his blood pressure, we may have to find yet another alternative to the port, and he gets a CPAP machine this week...all things that are such normal battles for 13 year olds. Really.
Anyway, Will wanted to know when our next doctor's appointment was...not because he wants to see yet another doctor, but because there is a woodworking store in Richmond that he desperately wants to visit. He has whittled all sorts of cool things recently, so he is looking for new tools with which to hone this new skill.
So, it looks like we may get that opportunity soon. The last few weeks Will has been reacting to the needle used in his infusions. With peripheral IV's (the ones they put in your arms or your hands), the needle is removed after a plastic catheter is placed in your vein. With Will's port, though, a 1/2 inch needle, called a Huber needle, remains in his port until the infusion ends. After 8 hours, I don sterile gloves and a mask and remove the needle. The only problem is, huber needles are made of stainless steel. Did I mention that Will is allergic to stainless steel?
So, after a few weeks of infusions with the port, Will started to complain of itching at the needle site. Then it actually got red right where the needle passed through the skin. That is when it hit me...um, from what exactly are these needles made? Oh, lovely. So, today, when I deaccessed the port, the entire area is red. In other words, the reaction is getting bigger and we can't locate a Huber needle that is not made of stainless steel...and so far I have called five manufacturers.
Tomorrow, I will continue my quest of locating a non-stainless Huber needle while Brooke, our amazing nurse, calls oncology physicians to see if anyone else has had this issue. Until we find another needle, we may have to return to peripheral IV's, which none of us want because finding a vein when he is down is really challenging and painful, and he has less mobility because he can't use his arm. And 8 hours is a long time to not use your arm. They are also discussing putting in a PICC line instead of using the port, but that has loads of other issues...like he couldn't swim and the risk of infection is greater...and it would be in his upper arm which would be very visible...Not something a 13 yo would readily accept.
So this is lining up to be one of THOSE weeks...we may have to go to twice a week infusions (each six hours long) to control his blood pressure, we may have to find yet another alternative to the port, and he gets a CPAP machine this week...all things that are such normal battles for 13 year olds. Really.
Friday, February 19, 2010
Are ya listening???
When I am chatting with my kids about a heart issue, I am famous for asking them, "You hear me, but are you really listening?" They know I'm using words 'cause they hear noise, but sometimes, to them, that's all it is...noise. It's like I am standing there flappin' my jaw and they are standing there going, "Blah. Blah. Blah." Don't take me wrong. My kids are generally respectful, but who wants to be wrong? I don't and you know a teenage boy doesn't!
That being said...you know the Lord must be saying the same thing to us..."Are ya listening???" Sometimes, I think He is there yelling at me and saying, "Would you please just get it?" But then I remember that He truly has a plan and He is very busy about working out that plan. The question is, do I really trust that plan?
This week is the perfect example...Benjamin's knee gave me quite the jolt. Two kids with issues? I mean, is there a huge sense of humor in all of this? Here I was thinking that the other shoe was about to fall and I had no idea how to manage this...and then we discovered that Ben's knee is really fine. There are issues there, but they are minor and should improve with rest, the proper exercises, and a brace that runner's use for the IT band. How easy is THAT?
I have become so accustomed to the difficult diagnosis and the constant awful news, that I just presumed that the xray reading was absolute and we were headed down another tough road. So while I am breathing this huge sigh of relief, I do have to pause and ask, "Do I trust that He is working all of this out for His own glory?" Do I really TRUST that He has my family firmly in His hands and is working in their hearts? Is He looking at me and saying, "Are ya listening?" Ouch. :)
That being said...you know the Lord must be saying the same thing to us..."Are ya listening???" Sometimes, I think He is there yelling at me and saying, "Would you please just get it?" But then I remember that He truly has a plan and He is very busy about working out that plan. The question is, do I really trust that plan?
This week is the perfect example...Benjamin's knee gave me quite the jolt. Two kids with issues? I mean, is there a huge sense of humor in all of this? Here I was thinking that the other shoe was about to fall and I had no idea how to manage this...and then we discovered that Ben's knee is really fine. There are issues there, but they are minor and should improve with rest, the proper exercises, and a brace that runner's use for the IT band. How easy is THAT?
I have become so accustomed to the difficult diagnosis and the constant awful news, that I just presumed that the xray reading was absolute and we were headed down another tough road. So while I am breathing this huge sigh of relief, I do have to pause and ask, "Do I trust that He is working all of this out for His own glory?" Do I really TRUST that He has my family firmly in His hands and is working in their hearts? Is He looking at me and saying, "Are ya listening?" Ouch. :)
Wednesday, February 17, 2010
Uncle
Throughout the last few years, with all that William has gone through, we trust that the Lord is working out His plan. There is no question as to whether or not He is in control of all that is occurring within our family. When days like today occur, though, it does make me want to just ask, "Why?"
This morning...I overslept. My blackberry is generally my alarm, but I forgot to charge my phone and its battery died, so I woke up way later than normal. We ate the emergency boxes of cold cereal. Beth is going to arrive to help with school way before I am ready. She graciously pitches in and never condemns my lack of preparedness.
We start school, but I have to break to call the rheumatologist that Dr. Grubb in Toledo wants us to see for Will's blue hands. (Is this autonomic dysfunction or are we dealing with a totally different problem?) The rheumatologist wants a doctor to call and make the appointment and send records. Um, which of the 15 doctors' records would you like? I call our pediatrician and ask if Ben's knee xray from Monday had been read and ask if they would please contact the rheumatologist to request an appointment.
They return my call and say that Ben needs to see an orthopedic. Oh, THAT wasn't what I expected. What did the report say? He has multiple cysts under his patella. Excuse me? No, I'm sorry. That can't be right. Isn't there a limit on the number of children who can have major medical issues at the same time? I understand that we have more than 2.1 children, but STILL. So, I call the pediatric orthopedic to schedule an appointment...and tell them what was found, and we are invited to see them tomorrow. That was quick.
My mother in law has been really sick for weeks. We have been talking about whether or not I should drive down and pick her up because we are getting concerned. Her doctor today finally admitted her, so she is finally in residence at the hospital and is hopefully on the road to recovery. I hope! I really want her here, but I know that she is better off in the hospital...
Will is at his second sleep study tonight. They are hopefully fitting a mask and adjusting pressures for the CPAP machine for his sleep apnea. When we saw the doctor last week to discuss the results of the first study, Dr. Basir said, "I don't want to give him yet another diagnosis, but..."
So, Mom is in the hospital, Will has yet another diagnosis, and now we get to fight the whole CPAP machine every night cause ya know he is anything but happy about it. Ben is facing...I have no idea and am working really hard to leave it in the Lord's hands because His are so much stronger than mine. But I really want to just say, "Uncle!" Could we please have a reprieve here?
This morning...I overslept. My blackberry is generally my alarm, but I forgot to charge my phone and its battery died, so I woke up way later than normal. We ate the emergency boxes of cold cereal. Beth is going to arrive to help with school way before I am ready. She graciously pitches in and never condemns my lack of preparedness.
We start school, but I have to break to call the rheumatologist that Dr. Grubb in Toledo wants us to see for Will's blue hands. (Is this autonomic dysfunction or are we dealing with a totally different problem?) The rheumatologist wants a doctor to call and make the appointment and send records. Um, which of the 15 doctors' records would you like? I call our pediatrician and ask if Ben's knee xray from Monday had been read and ask if they would please contact the rheumatologist to request an appointment.
They return my call and say that Ben needs to see an orthopedic. Oh, THAT wasn't what I expected. What did the report say? He has multiple cysts under his patella. Excuse me? No, I'm sorry. That can't be right. Isn't there a limit on the number of children who can have major medical issues at the same time? I understand that we have more than 2.1 children, but STILL. So, I call the pediatric orthopedic to schedule an appointment...and tell them what was found, and we are invited to see them tomorrow. That was quick.
My mother in law has been really sick for weeks. We have been talking about whether or not I should drive down and pick her up because we are getting concerned. Her doctor today finally admitted her, so she is finally in residence at the hospital and is hopefully on the road to recovery. I hope! I really want her here, but I know that she is better off in the hospital...
Will is at his second sleep study tonight. They are hopefully fitting a mask and adjusting pressures for the CPAP machine for his sleep apnea. When we saw the doctor last week to discuss the results of the first study, Dr. Basir said, "I don't want to give him yet another diagnosis, but..."
So, Mom is in the hospital, Will has yet another diagnosis, and now we get to fight the whole CPAP machine every night cause ya know he is anything but happy about it. Ben is facing...I have no idea and am working really hard to leave it in the Lord's hands because His are so much stronger than mine. But I really want to just say, "Uncle!" Could we please have a reprieve here?
Monday, February 8, 2010
I'm So Blue...
Well, it's been days since I have had anything substantial to state regarding Will, so I guess it's time to catch you up...
Friday morning, just before the lovely storm hit that dumped another 20+ inches on my supposedly southern state, William shows me his hands...which are a lovely shade of blue-gray. No, this isn't the War between the States, it's my son's autonomic dysfunction rearing its ugly, thought-to-be-stable head. So, in the midst of adding Ruth, the new puppy, to the household, I'm standing on some stranger's doorstep talking to the nurse in Dr. Teasley's office asking about Will's hands. The response is, "If the capillary refill is fine, then don't worry. It's just autonomic dysfunction." Just. Love that word. Not.
So we go through the weekend. Lots of snow. Lots of play. Will comes in at one point and his hands are the blue of a Colorado sky. Hands are warm. Check the cap refill. Fine. Hmmm...Just autonomic dysfunction.
Monday morning dawns...Will's nurse arrives to start his infusion. We review the last two weeks, because she needs the info for the records, and, I realize how much happened in two weeks. We had an ER visit. We were diagnosed with sleep apnea. And we have blue hands. She squeezes his fingers and says, "They are really slow to return to their dusky color..." So, another call to the dr. But by the time Laura called me back, we realized that Will was reacting to the Huber needles that are used to access the port for the infusion. He just has this low level itchy irritation. I call the company that keeps UPS in business and ships us our IV supplies, and we all scrounge to find a titanium Huber needle. (So far, we haven't found one.)
At this point, I realize that we should probably clue in his doctor in Toledo who actually specializes in autonomic dysfunction, and I leave a message. I also have to fax info to Cincinnati that they need to schedule Will's next surgery.
Then the electricity returns (Yay! It was out for 48 hours due to the global warming we've experienced in Virginia this year!). But, as for the rest of the day...The DSL modem died requiring me to call Verizon to order a new one. The dryer isn't drying, so I call Sears to schedule a repair (which of course is ten days away!). I call State Farm because the company who replaced our van windshield a month ago still hasn't repaired the damage they created to my van. Billy, my sys admin, received forty calls from me because MY computer won't boot. (It's been a hard month with me and computers! My netbook is in the shop due to smoke emitting from the USB port.) Let's just say that I am very tired of my phone, but it's about all I have for internet right now, and somehow I need to find titanium huber needles.
So, it's been a Monday. A very blue Monday...
Friday morning, just before the lovely storm hit that dumped another 20+ inches on my supposedly southern state, William shows me his hands...which are a lovely shade of blue-gray. No, this isn't the War between the States, it's my son's autonomic dysfunction rearing its ugly, thought-to-be-stable head. So, in the midst of adding Ruth, the new puppy, to the household, I'm standing on some stranger's doorstep talking to the nurse in Dr. Teasley's office asking about Will's hands. The response is, "If the capillary refill is fine, then don't worry. It's just autonomic dysfunction." Just. Love that word. Not.
So we go through the weekend. Lots of snow. Lots of play. Will comes in at one point and his hands are the blue of a Colorado sky. Hands are warm. Check the cap refill. Fine. Hmmm...Just autonomic dysfunction.
Monday morning dawns...Will's nurse arrives to start his infusion. We review the last two weeks, because she needs the info for the records, and, I realize how much happened in two weeks. We had an ER visit. We were diagnosed with sleep apnea. And we have blue hands. She squeezes his fingers and says, "They are really slow to return to their dusky color..." So, another call to the dr. But by the time Laura called me back, we realized that Will was reacting to the Huber needles that are used to access the port for the infusion. He just has this low level itchy irritation. I call the company that keeps UPS in business and ships us our IV supplies, and we all scrounge to find a titanium Huber needle. (So far, we haven't found one.)
At this point, I realize that we should probably clue in his doctor in Toledo who actually specializes in autonomic dysfunction, and I leave a message. I also have to fax info to Cincinnati that they need to schedule Will's next surgery.
Then the electricity returns (Yay! It was out for 48 hours due to the global warming we've experienced in Virginia this year!). But, as for the rest of the day...The DSL modem died requiring me to call Verizon to order a new one. The dryer isn't drying, so I call Sears to schedule a repair (which of course is ten days away!). I call State Farm because the company who replaced our van windshield a month ago still hasn't repaired the damage they created to my van. Billy, my sys admin, received forty calls from me because MY computer won't boot. (It's been a hard month with me and computers! My netbook is in the shop due to smoke emitting from the USB port.) Let's just say that I am very tired of my phone, but it's about all I have for internet right now, and somehow I need to find titanium huber needles.
So, it's been a Monday. A very blue Monday...
Tuesday, February 2, 2010
Sleep!
You know how you crave that most which you have promised to never touch? That which is unattainable is that which you desire most? Chocolate falls into that category...But when you are sleep deprived, then the thing you covet most is so simple...in concept! Blessed sleep!
Will played outside all afternoon yesterday while I was at a doctor's appointment. I got home (after sitting in traffic), made dinner, and was just starting the clean up when he said, "I don't feel well." Well, that isn't newsworthy, so I said, "I'm sorry." and moved on. What was I thinking? Within an hour, he had gone from not feeling well to reeealllly not feeling well. Bp was down, pulse was erratic, he was on the sofa...horizontally...and in no rush to move. Why can't we do this at 9 AM instead of 9PM? I mean really. Can't we please have a crisis that involves the sun? Nooooooooo.
So, off to MCV we go. David Charles met me there so he could park the USS Coleman (generally known as the Coleman's 15 passenger van) so Will didn't have to walk a country mile. The neurologist on call was one who actually remembered Will from previous emergencies and was amazingly helpful. He called ahead to the ER to have everything in place when we got there. Within a few minutes of walking in the door, Will was hooked up to all the monitors and the IV was in process. Efficiency of that order would never have happened at the local lovely Mary Washington Hospital. It was truly amazing. Great doctors. Amazing nurses...they even shared their coffee with me instead of the hospital brew they call coffee. (Just for the record, Trader Joe's gingerbread coffee is amazing. Especially at 2 AM!)
So, Will was in not so lovely shape when we got there, but two liters and four hours later, his sense of goofiness had returned. Oh yay! At 3 AM a goofy 13 yo is exactly what we need! :)
What we did learn last night...there's this lovely equation that involves the use of your systolic and diastolic pressures to measure your arterial pressure...which is a measure of how well your organs are receiving oxygen. Let's just say that when we got there, there was plenty of reason for him to not be feeling so well!
So today, he is vastly improved and I am vastly exhausted. 40 yo women need a few more than three hours of sleep. How did we do this when we had babies? Waking up with a very sore throat and lovely cough after only 3 hours of sleep has done nothing to improve my outlook on life. However, that being said, the drive to MCV is so totally worth it because the staff make it worthwhile. The pediatric ER there totally rocks. It may have been an incredibly long night, but they made it so much easier for us. They recognize that they don't have all the answers when it comes to Will's myriad of issues, and they recognize that he's a person, not just a case.
So, thanks, MCV and Katie and Diana for a night that was challenging but peacefully spent. And maybe, just maybe, tonight will involve peaceful slumber?
Will played outside all afternoon yesterday while I was at a doctor's appointment. I got home (after sitting in traffic), made dinner, and was just starting the clean up when he said, "I don't feel well." Well, that isn't newsworthy, so I said, "I'm sorry." and moved on. What was I thinking? Within an hour, he had gone from not feeling well to reeealllly not feeling well. Bp was down, pulse was erratic, he was on the sofa...horizontally...and in no rush to move. Why can't we do this at 9 AM instead of 9PM? I mean really. Can't we please have a crisis that involves the sun? Nooooooooo.
So, off to MCV we go. David Charles met me there so he could park the USS Coleman (generally known as the Coleman's 15 passenger van) so Will didn't have to walk a country mile. The neurologist on call was one who actually remembered Will from previous emergencies and was amazingly helpful. He called ahead to the ER to have everything in place when we got there. Within a few minutes of walking in the door, Will was hooked up to all the monitors and the IV was in process. Efficiency of that order would never have happened at the local lovely Mary Washington Hospital. It was truly amazing. Great doctors. Amazing nurses...they even shared their coffee with me instead of the hospital brew they call coffee. (Just for the record, Trader Joe's gingerbread coffee is amazing. Especially at 2 AM!)
So, Will was in not so lovely shape when we got there, but two liters and four hours later, his sense of goofiness had returned. Oh yay! At 3 AM a goofy 13 yo is exactly what we need! :)
What we did learn last night...there's this lovely equation that involves the use of your systolic and diastolic pressures to measure your arterial pressure...which is a measure of how well your organs are receiving oxygen. Let's just say that when we got there, there was plenty of reason for him to not be feeling so well!
So today, he is vastly improved and I am vastly exhausted. 40 yo women need a few more than three hours of sleep. How did we do this when we had babies? Waking up with a very sore throat and lovely cough after only 3 hours of sleep has done nothing to improve my outlook on life. However, that being said, the drive to MCV is so totally worth it because the staff make it worthwhile. The pediatric ER there totally rocks. It may have been an incredibly long night, but they made it so much easier for us. They recognize that they don't have all the answers when it comes to Will's myriad of issues, and they recognize that he's a person, not just a case.
So, thanks, MCV and Katie and Diana for a night that was challenging but peacefully spent. And maybe, just maybe, tonight will involve peaceful slumber?
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