Max’s tests, doctor appointments, pokes and prods have officially been completed. He is a very happy boy! When we finished today around lunch time we asked him how he wanted to celebrate, he could have any treat he wanted and what did he pick? A walk at the Inner Harbor (btw, it poured today and it was a cold, damp rain) and to eat fish. Off we went, Max was thrilled to case seagulls in the rain and eat calamari. After the week he had he truly deserved it. Michele and I deserved the nap we took when we got back to the house….
We spoke to Dr. Vricella, Max’s cardiac surgeon, today. He was pleased with what he saw on the MRI. He thought Max’s aortic valve looks better than he expected it to, in fact he thought it may even look better than it did last year. His only suggestion was to double his Cozaar dose which Dr. Dietz had already done on Tuesday so he was happy with that. He told us to have a repeat echo in 4 – 6 months and send it to him for review. So there you have it, “Arrivederci Johns Hopkins!”
A quick update to last night’s post, they found a liver for the little girl and she’s in the OR right now. The liver looked good and came from a perfect match so we are all praying for success. The little boy with the brain tumor has been moved to “the floor”, in the medical world we consider that a step towards the front door! Thoughts and prayers do really work!
Thanks for checking in…..we are now officially on the Baltimore minus 12 months track!
Thursday, December 11, 2008
Wednesday, December 10, 2008
Musings of an exhausted mother....
I feel that I need to put a disclaimer on tonight’s entry. It wanes a bit on the melancholy but it is something I feel I need to write about if for no other reason than to save my own sanity. Although today was easy for us -- Max had just a few labs and not much else that was particularly exciting -- it was also a very emotional day. One of the families we have met this year has a five year old daughter who had a liver transplant yesterday; the liver failed overnight and if another one doesn’t become available in the next 72 hours there are few if any options left for them. It’s heartbreaking to watch parents face the decisions they must make in such situations. During this stay I have noticed that the children here are much more critically ill than they have been in past stays. I cannot remember another time when a child staying at Children’s House passed away while we were here, this year it is very possible that two may pass before we leave. Now I must admit this house isn’t exactly a party place, the families here are facing serious illnesses, but this year it is particularly sad. We families form a certain bond during our time here, we all know each others stories, what our kids are going through, and we support one another as best we can. We may never see each other again but for the fleeting time we share this space we form a sort of club, we don’t have a secret handshake or codeword that identifies us as members of this club, we don’t need one because we share something more important, we share the same battle. We are all here to give our children their best shot at a healthy life or at least the best life they can have. Many of these families have sacrificed much to get their children here, this is something we know first hand, but none of us would ever consider any other alternative. As we sat together in the kitchen tonight our theme was “no matter what happens we know we have fought the fight, we have given our kids the best there is”. I’m not sure how much comfort this will be to the parents who may loose their children this week or any other week for that matter but sometimes that’s all we have, the comfort of knowing we’re doing the best we can for our kids. On that level we are not much different from any other parent, all parents do the best they can for their kids. We just happen to be doing it in a life or death situation.
Tonight please keep the little girl who is on life support waiting for a liver and the little boy whose brain tumor is back in your thoughts and prayers. You have no idea how much that means to these families. Our children touch many lives, in some cases this is the legacy their short lives leave behind. Someone once said it is not the quantity of life but rather the quality that matters most. I believe that this is especially true of chronically ill children who live more than we will ever know.
I’ll close with a promise, I promise to never be quite so philosophical again. Starting tomorrow I’ll turn back into my usual smart a## self!
Tonight please keep the little girl who is on life support waiting for a liver and the little boy whose brain tumor is back in your thoughts and prayers. You have no idea how much that means to these families. Our children touch many lives, in some cases this is the legacy their short lives leave behind. Someone once said it is not the quantity of life but rather the quality that matters most. I believe that this is especially true of chronically ill children who live more than we will ever know.
I’ll close with a promise, I promise to never be quite so philosophical again. Starting tomorrow I’ll turn back into my usual smart a## self!
Tuesday, December 9, 2008
A More Productive Day
Today was productive but long -- very, very long. We started out at about 10am when we checked into the Pediatric Cardiology department for Max’s cardiac echo and appointment with the cardiac geneticist. Max is always so happy to see all his friends here. He told everyone, from the receptionist to the doctors, about what he’s been up to this last year. Of course this year’s big news was that he has been playing soccer. Dr. Dietz was happy to hear this news as exercise is important to Max’s muscle development. Max wasn’t as interested in the physiological benefits of exercise as he was with telling everyone about the many awards he has received this season. To hear Max talk you would have thought he took his team to the championship single handedly. If there is one thing that this kid doesn’t lack its ego!
On the cardiac front the news was generally positive. Max’s heart looks good, or to be more precise it looks the same as always so as they say in the business, “no news is good news.” In fact, the doctor told us he wasn’t worried about the heart valves at all -- we should be able to get a lot more mileage out of them. Thank God! The “interesting” news was that they have successfully engineered a mouse with the same gene mutation that Max has – we did get naming rights here and we’re happy to announce the arrival of “Maxi Mouse”.
Our second appointment was with Max’s GI doctor. He was pleased with Max’s growth and overall health. He did increase all of Max’s vitamin supplements which we expected due to how low his blood levels have been. The other news which we found just a little odd and a lot depressing was that as Max goes through the normal growth spurt of adolescence we should be prepared to put his feeding tube back in so that he can do overnight feeds. For us this seems like a huge step backwards, surgically placing a tube, hooking him up to a feeding pump every night, etc., etc. Been there done that and can’t imagine doing it again. Michele and I, although shell-shocked, have decided that Max is not the “typical” case so we are sure that we can avoid this miserable fate by diligently working on Max’s diet to insure he gets the increased calories he’ll need (up to 15,000 a day!).
All of this ended at about 7pm when I was finally able to feed the kids "lunch" as Max called it. He's still expecting to have dinner! Tomorrow should be quieter, all we have to get done is blood work and other labs. I also have to set up an abdominal ultrasound and reschedule with the surgeon so we’re almost at the finish line of this marathon. Yippeeeeeeee!
On the cardiac front the news was generally positive. Max’s heart looks good, or to be more precise it looks the same as always so as they say in the business, “no news is good news.” In fact, the doctor told us he wasn’t worried about the heart valves at all -- we should be able to get a lot more mileage out of them. Thank God! The “interesting” news was that they have successfully engineered a mouse with the same gene mutation that Max has – we did get naming rights here and we’re happy to announce the arrival of “Maxi Mouse”.
Our second appointment was with Max’s GI doctor. He was pleased with Max’s growth and overall health. He did increase all of Max’s vitamin supplements which we expected due to how low his blood levels have been. The other news which we found just a little odd and a lot depressing was that as Max goes through the normal growth spurt of adolescence we should be prepared to put his feeding tube back in so that he can do overnight feeds. For us this seems like a huge step backwards, surgically placing a tube, hooking him up to a feeding pump every night, etc., etc. Been there done that and can’t imagine doing it again. Michele and I, although shell-shocked, have decided that Max is not the “typical” case so we are sure that we can avoid this miserable fate by diligently working on Max’s diet to insure he gets the increased calories he’ll need (up to 15,000 a day!).
All of this ended at about 7pm when I was finally able to feed the kids "lunch" as Max called it. He's still expecting to have dinner! Tomorrow should be quieter, all we have to get done is blood work and other labs. I also have to set up an abdominal ultrasound and reschedule with the surgeon so we’re almost at the finish line of this marathon. Yippeeeeeeee!
Monday, December 8, 2008
I should really learn to keep my mouth shut....
.....and for those of you who know me this would be no easy feat. It seems that my last blog update has been proven invalid -- this trip can and did get worse today.
We actually arrived for Max's cardiac MRI at 5:30am as instructed only to find out that registration doesn't start until 6am. Trying explaining THAT to two very cranky children (and one rather cranky husband)! When the radiology tech brought us back to the exam room I knew we were in trouble when she asked me if we had had a call from their department on Friday telling me that our appointment needed to be moved. Now I know I look stupid but I couldn't help to think, "Is this girl insane?" Why would I drag myself, two kids and husband out of bed at 4:30am, walk in 20 degree weather, and wait more than half an hour to check in if I had had a call cancelling Max's MRI? At this point I was cranky but I held it together long enough to ask why they needed to cancel. Evidently the pediatric cardiologist is only in lab on Wednesdays, which we knew from past experience but because Max had an appointment with his cardiac surgeon at noon and we know he needed to see the MRI we assumed special arrangements had been made. WRONG! I asked what the plan was in light of all this, the tech told me they would go through the regular protocol (after I explained what Max's protocol was) and then if need be they could always get more film in a second session. Did anyone mention to Max that there might be a repeat MRI? I know I'm not crazy enough to go there....the child is still in the dark on this possibility. So after nearly two hours we were done and sent on our way. We ran back to the room to sleep for a bit, take showers and eat something before our appointment with Max's cardiac surgeon.
We arrive for our appointment with Dr. Vricella on time anxious to talk about the MRI results, Max's valves, the aorta repair, etc., etc., etc. After sitting in the waiting area for about 15 minutes with Mr. Monkey (aka Max) who was kind enough to entertain everyone in the room -- patients, secretaries, doctors, and interns alike --- we are told that Dr. Vricella had just been called into an emergency surgery so our appointment would need to be re-scheduled. Argh! Obviously this was an emergency so we understood completely although I must admit thinking, "And I subjected my son to that half-assed MRI this morning?" I guess we really could have postponed that to Wednesday as well. Ah, the best laid plans of mice and men.....So all in all Monday was a bust! It's 8 o'clock and Max has been asleep for two hours if that's any indication of how smoothly our day ran.
While sitting here in the kitchen at Children's House writing today's update a women came in to get something. I remembered seeing her last night, she had been talking to herself in a nonsensical way and I thought she was just a little whacky. Tonight she started a conversation with me and she told me her son had been rushed to the PICU last week and his brain tumor was back for the fourth time. Now this little boy is just eight years old, not much older than Max, and the doctor's have told her "this is probably it." So this woman who I had written off as "whacky" just 24 hours ago taught me an extremely important lesson tonight -- no matter how bad a day I had today it was still a good day. No matter how much I wanted to throw Max out a window because he was acting like a nut at least I have a son to loose my patience with. All in all, I guess I learned once again to be happy with what I have. Perfect its not but its better than most!
We actually arrived for Max's cardiac MRI at 5:30am as instructed only to find out that registration doesn't start until 6am. Trying explaining THAT to two very cranky children (and one rather cranky husband)! When the radiology tech brought us back to the exam room I knew we were in trouble when she asked me if we had had a call from their department on Friday telling me that our appointment needed to be moved. Now I know I look stupid but I couldn't help to think, "Is this girl insane?" Why would I drag myself, two kids and husband out of bed at 4:30am, walk in 20 degree weather, and wait more than half an hour to check in if I had had a call cancelling Max's MRI? At this point I was cranky but I held it together long enough to ask why they needed to cancel. Evidently the pediatric cardiologist is only in lab on Wednesdays, which we knew from past experience but because Max had an appointment with his cardiac surgeon at noon and we know he needed to see the MRI we assumed special arrangements had been made. WRONG! I asked what the plan was in light of all this, the tech told me they would go through the regular protocol (after I explained what Max's protocol was) and then if need be they could always get more film in a second session. Did anyone mention to Max that there might be a repeat MRI? I know I'm not crazy enough to go there....the child is still in the dark on this possibility. So after nearly two hours we were done and sent on our way. We ran back to the room to sleep for a bit, take showers and eat something before our appointment with Max's cardiac surgeon.
We arrive for our appointment with Dr. Vricella on time anxious to talk about the MRI results, Max's valves, the aorta repair, etc., etc., etc. After sitting in the waiting area for about 15 minutes with Mr. Monkey (aka Max) who was kind enough to entertain everyone in the room -- patients, secretaries, doctors, and interns alike --- we are told that Dr. Vricella had just been called into an emergency surgery so our appointment would need to be re-scheduled. Argh! Obviously this was an emergency so we understood completely although I must admit thinking, "And I subjected my son to that half-assed MRI this morning?" I guess we really could have postponed that to Wednesday as well. Ah, the best laid plans of mice and men.....So all in all Monday was a bust! It's 8 o'clock and Max has been asleep for two hours if that's any indication of how smoothly our day ran.
While sitting here in the kitchen at Children's House writing today's update a women came in to get something. I remembered seeing her last night, she had been talking to herself in a nonsensical way and I thought she was just a little whacky. Tonight she started a conversation with me and she told me her son had been rushed to the PICU last week and his brain tumor was back for the fourth time. Now this little boy is just eight years old, not much older than Max, and the doctor's have told her "this is probably it." So this woman who I had written off as "whacky" just 24 hours ago taught me an extremely important lesson tonight -- no matter how bad a day I had today it was still a good day. No matter how much I wanted to throw Max out a window because he was acting like a nut at least I have a son to loose my patience with. All in all, I guess I learned once again to be happy with what I have. Perfect its not but its better than most!
Sunday, December 7, 2008
We're here safe and sound....
sort of. The flight was fine if you overlook the crabby man (who just happened to be a USAir pilot in uniform -- way to score business buddy) who actually screamed at my kids solely because they had the audacity to be speaking to one another. Evidently it is illegal to have a discussion on a plane when the pilot is trying to sleep! Who knew? I'm just really glad Max and Ellie weren't kicking his chair or pulling on the back of his seat, he might just have killed them.
On top of this Max's nose bleed the entire trip, we were all convinced our first stop in Baltimore would be the ER at Johns Hopkins. Knock wood he seems OK now. Thank God I had a really nice couple sitting next to me or I would have lost what little remains of my sanity. This trip can only improve from here.....
Tomorrow's the big day, so stay tuned same time, same channel for more news! Fingers crossed for good news only.
Have a great week all!
On top of this Max's nose bleed the entire trip, we were all convinced our first stop in Baltimore would be the ER at Johns Hopkins. Knock wood he seems OK now. Thank God I had a really nice couple sitting next to me or I would have lost what little remains of my sanity. This trip can only improve from here.....
Tomorrow's the big day, so stay tuned same time, same channel for more news! Fingers crossed for good news only.
Have a great week all!
Saturday, December 6, 2008
Midnight Post -- Baltimore Minus 10 Hours
This will be the shortest post known to man, mostly because it is midnight and we are NOT I repeat NOT even near ready. I hope I don't forget anything important like plane tickets, coats, Max's meds.....
Before all this chaos began this evening we had a wonderful day with Max's soccer team. What a great bunch of kids and parents! Their kindness and generosity are outstanding and we are very, very lucky to have come to know them. Max will miss his soccer buddies this week! We cannot thank the entire Fighting Falcon team enough for all they do for Max and his rag-tag family!
Remember to check-in this week, I'll keep the blog updated with appointment news, test results, etc. Have a great week and keep Max in your prayers!
Before all this chaos began this evening we had a wonderful day with Max's soccer team. What a great bunch of kids and parents! Their kindness and generosity are outstanding and we are very, very lucky to have come to know them. Max will miss his soccer buddies this week! We cannot thank the entire Fighting Falcon team enough for all they do for Max and his rag-tag family!
Remember to check-in this week, I'll keep the blog updated with appointment news, test results, etc. Have a great week and keep Max in your prayers!
Wednesday, December 3, 2008
Mid-Week Update -- Baltimore Minus Three
It's getting closer and closer and I'm farther and farther away from ready. At this rate it's likely that "packing" will mean throwing things in hefty bags and making a mad dash to the airport! I find myself running around trying to get everything done or I should say get done what I can remember needs to be done. An example of this occurred this evening when I spent over an hour running around the house trying to find my glasses. I screamed at anyone stupid enough to cross my path and still no glasses! Ellie and I hopped into the car and ran back to the store we just left and still no glasses! I get back home and tear the house apart (I found this exercise both a stress-reliever as well as counter productive considering this was the same house I had just been cleaning because I am psychotic enough to not like leaving the house dirty for a week while we're gone) and still no glasses! Michele then insisted that I sit down and eat something while he cleared the dirty dishes into the dishwasher and what does he discover? GLASSES!! I immediately blamed him, cleaned them up and put them on. That will teach him to never play games with my glasses again!
On another more positive note, Max's Market received a $500 grant today from Carl's Jr. restaurants which will really help us bring some great gifts to the kids at Phoenix Children's this Christmas!
Please keep us in your thoughts this week as we get ready for the "big trip" to Baltimore! By the way, if anyone happens to find my sanity would you mind e-mailing it back to me?
On another more positive note, Max's Market received a $500 grant today from Carl's Jr. restaurants which will really help us bring some great gifts to the kids at Phoenix Children's this Christmas!
Please keep us in your thoughts this week as we get ready for the "big trip" to Baltimore! By the way, if anyone happens to find my sanity would you mind e-mailing it back to me?
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