One by one we've all fallen. At the moment the house sounds like a TB ward with plenty of hacking, sneezing, and moaning and groaning. I don’t remember the last time we were all sick simultaneously but let me tell you this week has not been fun!
Typhoid Max (as we have named him in honor of his plague carrying abilities) is now probably the healthiest of all of us, he's still not breathing at a 100% and his cough is frightening but hopefully the worst is over. It has to be, none of us are healthy enough to take care of him!
So I am checking the respiratory flu off our “to-do” list and now all we have to do is wait for the stomach flu….I can’t believe I just said that. One of two things will happen as a result of this comment: one, by mentioning it I will have warded off the evil spirits or two, more likely than not I will get what I asked for and we can go for “round two”. When will I ever learn to keep my BIG mouth shut…..?
Wednesday, January 19, 2011
Monday, January 17, 2011
Saturday Night Fever
Literally. When a glassy-eyed child falls asleep in his dinner plate something’s up and that something is generally not good.
Max had started with one of his slight coughs earlier in the week which usually signals that the best is yet to come, and come it did with a fury. We spent Saturday evening setting up clinic. Each piece of medical equipment came rolling out one by one. We started with the pulse oximeter which indicated that Max’s heart rate was way up, signaling the arrival of a high temp. At the same time his “sats” were really low (this means that Max’s blood was not ‘saturated’ sufficiently with oxygen - although he was breathing hard he was not getting enough oxygen into his blood) so out rolled the oxygen tank and the nebulizer for breathing treatments. Kids with heart defects can quickly wear themselves out when they struggle to breathe so this is always a big concern for us, we knew we had a very small window of opportunity to handle this issue at home and we were determined to stay out of the ER. Michele and I ran around, each of us performing our assigned tasks, getting meds, and of course trying to comfort Max. When we finally broke down and gave Max the “super-duper” cough medicine with codeine in it I’m pretty sure both Michele and I would have been quite happy to take a swig ourselves.
Once we got Max settled I crawled into bed next to him and watched the monitor like a hawk, as I saw his numbers trend in the wrong direction I started to calculate which ER we should go to. This involves a very complex algorithm which takes into consideration things such as how quickly things are transpiring and thus distance, which ER might be quickest (relatively), and most importantly where I want to be if we’re admitted (as if I want to be in ANY hospital). As monitor alarms sounded I prayed that we could just make it through the night because I was afraid that if we needed to go to the hospital Max would only become more stressed and then we’d really be in trouble. If he was having trouble breathing and regulating his heart rate while asleep I kept imagining how much worse it would be when he realized he was going back to the hospital. My prayers were answered, Max slept through the night and although his numbers were still not great they weren’t worse.
It was quite obvious that Max felt no better yesterday as he stayed in bed quietly watching TV and never once asked for a video game. If it weren’t for hourly vital sign checks I may just have forgotten he was in the bedroom. Max and quiet….now there’s a concept!
Now I’m waiting to hear from the pediatrician although I know there’s really nothing else we can do other than wait for the cough and congestion to subside. The other 64,000 dollar question will be school tomorrow – of all weeks this is Max’s week to be “star student” and he’s determined to not miss his 15 minutes of fame….as if this kid isn’t famous enough!
Max had started with one of his slight coughs earlier in the week which usually signals that the best is yet to come, and come it did with a fury. We spent Saturday evening setting up clinic. Each piece of medical equipment came rolling out one by one. We started with the pulse oximeter which indicated that Max’s heart rate was way up, signaling the arrival of a high temp. At the same time his “sats” were really low (this means that Max’s blood was not ‘saturated’ sufficiently with oxygen - although he was breathing hard he was not getting enough oxygen into his blood) so out rolled the oxygen tank and the nebulizer for breathing treatments. Kids with heart defects can quickly wear themselves out when they struggle to breathe so this is always a big concern for us, we knew we had a very small window of opportunity to handle this issue at home and we were determined to stay out of the ER. Michele and I ran around, each of us performing our assigned tasks, getting meds, and of course trying to comfort Max. When we finally broke down and gave Max the “super-duper” cough medicine with codeine in it I’m pretty sure both Michele and I would have been quite happy to take a swig ourselves.
Once we got Max settled I crawled into bed next to him and watched the monitor like a hawk, as I saw his numbers trend in the wrong direction I started to calculate which ER we should go to. This involves a very complex algorithm which takes into consideration things such as how quickly things are transpiring and thus distance, which ER might be quickest (relatively), and most importantly where I want to be if we’re admitted (as if I want to be in ANY hospital). As monitor alarms sounded I prayed that we could just make it through the night because I was afraid that if we needed to go to the hospital Max would only become more stressed and then we’d really be in trouble. If he was having trouble breathing and regulating his heart rate while asleep I kept imagining how much worse it would be when he realized he was going back to the hospital. My prayers were answered, Max slept through the night and although his numbers were still not great they weren’t worse.
It was quite obvious that Max felt no better yesterday as he stayed in bed quietly watching TV and never once asked for a video game. If it weren’t for hourly vital sign checks I may just have forgotten he was in the bedroom. Max and quiet….now there’s a concept!
Now I’m waiting to hear from the pediatrician although I know there’s really nothing else we can do other than wait for the cough and congestion to subside. The other 64,000 dollar question will be school tomorrow – of all weeks this is Max’s week to be “star student” and he’s determined to not miss his 15 minutes of fame….as if this kid isn’t famous enough!
Sunday, January 9, 2011
Acceptance
“I can’t wait to go to Baltimore in two months!” I admit I was shocked to hear these words tumble from Max’s mouth so matter-of-factly as if he was talking about some super cool vacation and not a trip that involves countless appointments, testing and even surgery. Over the last few days I’ve noticed that Max seems more positive about his upcoming treatment, there is less complaining and more acceptance. He speaks about it more naturally, questions less, and seems to have come to terms with the whole mess.
Over the years I have seen an evolution in how Max deals with everything that his life throws him. Obviously during the first year or two the only emotions we dealt with were our own, Max was too little to express very much. We knew this would change and of course it did as he grew. As a toddler we expected tantrums, anger, and general uncooperativeness. There was none of these things. Max seemed to accept it all as part of life, much like other children his age accept bikes, balls and cartoons as part of life. Max was a model patient; sweet, never complaining, and brave beyond words. We were in awe of our little boy’s courage as he faced things that we could not imagine. He seemed to go through life with that huge smile of his on his face as if he didn’t have a care in the word. All of this was his “normal” and he was fine with it. Just as before we knew this too would change. In the last year or two there seems to be some deep anger and frustration on Max’s part when dealing with his medical care. He blames us, he blames the doctors, heck he’ll blame anyone who stands still long enough. But when all is said and done he comes to terms with what looms on his horizon and he returns to his sweet, goofy little self and marches on. We’re still in awe of our son, it is without doubt extremely difficult to watch Max grapple with his reality but it is because of his resilience that we too are able to deal with it all. Certainly there will be more changes ahead but with Max we can count on one thing – the incredible smile which always returns to his face.
And so it seems acceptance has hit Max as regards his surgery in March, or is he just looking forward to Baltimore crab cakes and DC cupcakes?
Over the years I have seen an evolution in how Max deals with everything that his life throws him. Obviously during the first year or two the only emotions we dealt with were our own, Max was too little to express very much. We knew this would change and of course it did as he grew. As a toddler we expected tantrums, anger, and general uncooperativeness. There was none of these things. Max seemed to accept it all as part of life, much like other children his age accept bikes, balls and cartoons as part of life. Max was a model patient; sweet, never complaining, and brave beyond words. We were in awe of our little boy’s courage as he faced things that we could not imagine. He seemed to go through life with that huge smile of his on his face as if he didn’t have a care in the word. All of this was his “normal” and he was fine with it. Just as before we knew this too would change. In the last year or two there seems to be some deep anger and frustration on Max’s part when dealing with his medical care. He blames us, he blames the doctors, heck he’ll blame anyone who stands still long enough. But when all is said and done he comes to terms with what looms on his horizon and he returns to his sweet, goofy little self and marches on. We’re still in awe of our son, it is without doubt extremely difficult to watch Max grapple with his reality but it is because of his resilience that we too are able to deal with it all. Certainly there will be more changes ahead but with Max we can count on one thing – the incredible smile which always returns to his face.
And so it seems acceptance has hit Max as regards his surgery in March, or is he just looking forward to Baltimore crab cakes and DC cupcakes?
Monday, January 3, 2011
For Better or Worse
What a year it’s been, perhaps one of the toughest we’ve had. Obviously the first few years with Max’s health were extremely difficult but since about the age of three things have been relatively stable. Yes there have been a few intense moments: an open-heart surgery, the realization that we are dealing with an unknown genetic syndrome and a few others but none of these things came completely as surprises or at least not emergent surprises. Emergency rooms, surgeries, and hospital stays were neatly tucked away in the back of our minds as what we used to do not what we do now. This last year has quickly shown us how terribly wrong we were to allow ourselves to be lulled into a false sense of normalcy, nothing can be “normal” when your son faces so many serious health issues. Twelve months ago we didn’t even know that Max was having vision problems. We didn’t know that his aortic valve would give out so soon. We didn’t know….
But that was then and this is now. Its 2011 and now we know. Over the last day or two I must admit I’ve cringed to hear people say how happy they are that 2010 is over and how much better 2011 will be. All I can think is that yes 2010 stunk, but how much better can we realistically expect 2011 to be? Max has two major surgeries in the next six months each involving a good amount of recovery time. How can any of this be “better”? Indeed, 2011 promises to be another tumultuous year but we’ll get through just as we’ve gotten through all the others – together. We’ll cry when we need to, laugh when we can, and kick butts when we have to! It won’t be “better”, it won’t be “worse”, it will just “be” and that’s OK when it’s all about the most remarkable little boy in the world whose smile, sense of humor and shear sense of self makes it all “better”.
But that was then and this is now. Its 2011 and now we know. Over the last day or two I must admit I’ve cringed to hear people say how happy they are that 2010 is over and how much better 2011 will be. All I can think is that yes 2010 stunk, but how much better can we realistically expect 2011 to be? Max has two major surgeries in the next six months each involving a good amount of recovery time. How can any of this be “better”? Indeed, 2011 promises to be another tumultuous year but we’ll get through just as we’ve gotten through all the others – together. We’ll cry when we need to, laugh when we can, and kick butts when we have to! It won’t be “better”, it won’t be “worse”, it will just “be” and that’s OK when it’s all about the most remarkable little boy in the world whose smile, sense of humor and shear sense of self makes it all “better”.
Tuesday, December 28, 2010
A Visit from Hope
Plans for our March trip to Hopkins are already starting to come together, appointments are being confirmed, test results are being FedEx'd around (yes, I finally got the discs from PCH!), and insurance companies are being notified. This leaves us with the logistics of travel plans. These plans are probably the toughest part of our trips to sort out because after four years of "back and forths" to Baltimore the bank and credit cards have run dry, but hope has not!
Last week we had a visit from our friends at Hope Gives Ministries, Max was as always happy to entertain his visitors and we were thrilled to hear that they would work with us on travel plans. What a Christmas blessing! I don't know if I can adequately express just what this support means to us because without it I don't know if we could provide Max with the medical care he needs and deserves, thank you so much Michelle, Kelly and Joni!
Max with Michelle and Joni
Max and Kelly
Friday, December 24, 2010
'Twas the Night Before Christmas....
...and all through the house not a creature was stirring.....except for me because there is way too much to do before the short people awaken from their slumber expecting to see that a jolly old elf and his eight tiny reindeer have paid them a visit....
.......so dash away, dash away I must but not before leaving a few pics of Max and his entourage getting into the Holiday spirit!
.......so dash away, dash away I must but not before leaving a few pics of Max and his entourage getting into the Holiday spirit!
Max unwinding after a wild 4th Grade Christmas Party!
I know, I know....I'm too cute for my hat!
One last chat with the "Boss" before the BIG night!
Merry Christmas to all and to all a good night!!
Thursday, December 16, 2010
And so the Nightmare Continues
I spent a lot of time today trying to figure out how to write this post. I am beginning to feel like all I can share is “doom and gloom”. I’ve turned into “Negative Nelly” and it hurts that I haven’t been able to post much good news lately but there just hasn’t been much of it to post.
We had our follow-up appointment yesterday with the general surgeon we have used in the past. I have to admit that this guy has never been Max’s biggest fan, from birth it has been as if he isn’t happy if he’s not giving us some horrific diagnosis/prognosis for Max. That first year when we were inpatient, although it was his partner that was Max’s primary care provider, this doctor insisted on testing Max for several horrendous disorders. Often not once, not twice, but three times. Each time he almost seemed disappointed when the test results came back “negative”. He was part of the team of doctors that used to tell us, “It’s just Max” because they didn’t really know what Max had and they didn’t want to admit their own medical ignorance. Anyway some things never change…..
After a ten second conversation with me and without even acknowledging Max’s presence in the room, he ran off to read the CAT scan that had been done while Max was in the hospital last week. It seemed as if the exam room door had barely shut when the medical student was sent to summon me. There was the doctor in front of a computer screen shaking his head, “Do you know what this is?” he nearly screamed at me. Before I could answer he said, “This is pseudo-obstruction of his bowels and it’s a miracle his intestines even work. Although it’s only a matter of time before they don’t work anymore and he’ll be completely dependent on IV nutrition.” He continued abruptly, “...and there’s nothing we can do for this…enjoy this time because it’s only going to get worse.” All of this without taking a breath or noticing that I was about to faint, he probably didn’t care because he was too focused on delivering another horrific diagnosis – after all it’s been nine years and he needed to get another one in.
I am rarely, if ever speechless but I have to tell you this time I was. Max stood beside me and had heard everything so I was forcing myself to hold it together but I just kept imaging Max no longer being able to eat and it took everything I had in me to not scream or rage at this doctor. In the end it didn’t really matter, he was already out of the room with his entourage complaining to them about how long this dictation would take!
Today is a new day and I’ve decided that this is just another “fire drill” sparked by one man’s desire to see Max as nothing more than a really bad train wreck. Oddly enough I am doing better than Michele is, I usually rely on him to hold me up – this time we’ve switched roles. I am convinced that if Max had always had this problem, as this surgeon insists he knew all along (strange this is the first time I’ve heard it from his mouth…), some other doctor with more skill and more knowledge would have already picked up on it. I’ll start sending the discs out to Hopkins and wait to see what they say before I truly panic. That is I’ll send them the disc if I can EVER get PCH to produce one!
At this point I am praying for a respite because I am seriously concerned about us and our stress level. We need a bit of peace and tranquility, at least through the end of the year. 2011, here we come! Certainly it has to get better!
We had our follow-up appointment yesterday with the general surgeon we have used in the past. I have to admit that this guy has never been Max’s biggest fan, from birth it has been as if he isn’t happy if he’s not giving us some horrific diagnosis/prognosis for Max. That first year when we were inpatient, although it was his partner that was Max’s primary care provider, this doctor insisted on testing Max for several horrendous disorders. Often not once, not twice, but three times. Each time he almost seemed disappointed when the test results came back “negative”. He was part of the team of doctors that used to tell us, “It’s just Max” because they didn’t really know what Max had and they didn’t want to admit their own medical ignorance. Anyway some things never change…..
After a ten second conversation with me and without even acknowledging Max’s presence in the room, he ran off to read the CAT scan that had been done while Max was in the hospital last week. It seemed as if the exam room door had barely shut when the medical student was sent to summon me. There was the doctor in front of a computer screen shaking his head, “Do you know what this is?” he nearly screamed at me. Before I could answer he said, “This is pseudo-obstruction of his bowels and it’s a miracle his intestines even work. Although it’s only a matter of time before they don’t work anymore and he’ll be completely dependent on IV nutrition.” He continued abruptly, “...and there’s nothing we can do for this…enjoy this time because it’s only going to get worse.” All of this without taking a breath or noticing that I was about to faint, he probably didn’t care because he was too focused on delivering another horrific diagnosis – after all it’s been nine years and he needed to get another one in.
I am rarely, if ever speechless but I have to tell you this time I was. Max stood beside me and had heard everything so I was forcing myself to hold it together but I just kept imaging Max no longer being able to eat and it took everything I had in me to not scream or rage at this doctor. In the end it didn’t really matter, he was already out of the room with his entourage complaining to them about how long this dictation would take!
Today is a new day and I’ve decided that this is just another “fire drill” sparked by one man’s desire to see Max as nothing more than a really bad train wreck. Oddly enough I am doing better than Michele is, I usually rely on him to hold me up – this time we’ve switched roles. I am convinced that if Max had always had this problem, as this surgeon insists he knew all along (strange this is the first time I’ve heard it from his mouth…), some other doctor with more skill and more knowledge would have already picked up on it. I’ll start sending the discs out to Hopkins and wait to see what they say before I truly panic. That is I’ll send them the disc if I can EVER get PCH to produce one!
At this point I am praying for a respite because I am seriously concerned about us and our stress level. We need a bit of peace and tranquility, at least through the end of the year. 2011, here we come! Certainly it has to get better!
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