Oh boy, what a day we've had so far! Morgan's back was clear enough for us to do the skin testing, one of the steps in determining whether or not we are on track with what we have thought she is allergic... These tests are not 100% accurate, but that being said, all we've got to work with.... After 10 or so pokes on Morgan's back (after a really quick prayer that said something like, "I really doubt we are going to find out she's not allergic, but I would give ANYTHING to just take one food off of the list. Please, please, please!"), we sat there for a second, while Morgan cried from the aforementioned pokes... We sat for another second, NO HIVES, HURRAY! Maybe she really has grown out of these horrible allergies... We sat for another second with Morgan saying that her back was itchy. Uh-oh. I know what that means. Her skin was reacting and did it ever. Her back had HUGE hives. We haven't received the official "word" from the doctor, but I fear we may have just lost a food.... or five. Maybe not, some of the positives might have been multiple types of nuts. It's heartbreaking to see that the battle has not been won.
Then after that oh so fun moment, we went on to meet with a walking brain, and a brain that is only interested in eczema. Most of what he said went WAY over this fake-blonde girl's head, but I did get some good information. Not good news, but good information. Although I was pleased with Morgan's skin changes, they are not. They think she should have progressed further than this.... We're going to try Vitamin D supplements, stronger medications and run more intensive tests to see why she's responding. Also on the list "to-do" is some intensive counseling. Kids with eczema get into a vicious cycle of itch, then rashing, then anxiety about itching and rashing, which makes them itch more, which makes them rash more and have more anxiety. Those of you who know Morgan, know that she can be intense. Some (not all) is related to the constant state of tension in her little body, so we're going to work on getting some tools to reduce that stress and anxiety and teach her ways to calm herself in ways other than itching.... Oh the party continues.
Oh but wait, there's more... We've learned (which I have worried about) that carpet is an eczema child's worst nightmare. They highly recommend that we put hardwoods throughout the house in any environment that Morgan "regulars." Hmmmm, that would be the whole house. So I have purchased a money printer and have set up a little money-printing studio in our extended stay hotel. (Kidding FBI!)
Wednesday, September 15, 2010
Tuesday, September 14, 2010
Soak and Seal, repeat. Soak and Seal, repeat. Soak and seal, repeat!
Like I mentioned in the previous post, we have learned a ton and have been doing A LOT of treatments. I can't believe the improvement on Morgan's skin. It's fantastic. What we do is soak her in a bathtub for 20 minutes, with wet towels all over her and then immediately put TONS of topical steroids all over her body. And I mean tons, we have gone through the amount of topical steroids we usually go through in a year, in the past day and a half. I expressed awe about this but what the doctor said made sense, why are you putting them on if they don't work. It's better to get the situation under control so you don't have to use them again. Aha, that's why you went to medical school, Dr.! Then we put wet pajamas and wet tube socks on her arms and legs and then dry pajamas. Then she sits for 2 hours (kind of hard to do anything with your hands wrapped up). We're doing three of these treatments per day until her skin is clear. We even just did one in the hotel and she'll sleep in the wet pajamas. (Luckily they prescribed a sedative for the next couple of days, but as I'm typing, I'm not sure it's doing the trick. She's kind of acting like a drunk college kid. Great.)
We're also in the phase of information gathering, meaning figuring out all that is going on in this little body. A big emphasis is being placed on her asthma, which is something we've never worried about before, but our attending doctor brought up an excellent point. If her asthma isn't treated well and she does have an allergic reaction from food, she is much more likely to have difficulty breathing and then, well, we won't go into that. So, needless to say, I'm really happy for this emphasis. Food allergy testing was today and tomorrow. We aren't hopeful that we will come back with any foods, meaning that she'll be "food challenged" and declared to be free of that allergy. The doctor seemed to think that her reactions have been the "real deal," meaning until there's a cure, we'll continue our hyperviligence!
This was after the sedative was given last night. She was exhausted to begin with, so the sucker really did the trick. (Notice the side rails are up?) She was goofy and this morning said she was super dizzy. BUT, she slept through the night for literally the first time in a couple of years and was so proud of herself that she didn't scratch herself.
Snug as a bug in a rug. During the day wraps, her face was covered as well, with openings for her eyes and mouth. Can't say Ms. M was a fan of that! There is no way that Ryan and I could have convinced her to get wrapped like this at home, even with her being on her "better" behavior for the nursing staff, she threw quite a major fit when we first did it. I have to admit, I would have felt pretty claustrophobic and uncomfortable as well. But I think she's seeing the benefits, so we've had a lot less resistance!
We're also in the phase of information gathering, meaning figuring out all that is going on in this little body. A big emphasis is being placed on her asthma, which is something we've never worried about before, but our attending doctor brought up an excellent point. If her asthma isn't treated well and she does have an allergic reaction from food, she is much more likely to have difficulty breathing and then, well, we won't go into that. So, needless to say, I'm really happy for this emphasis. Food allergy testing was today and tomorrow. We aren't hopeful that we will come back with any foods, meaning that she'll be "food challenged" and declared to be free of that allergy. The doctor seemed to think that her reactions have been the "real deal," meaning until there's a cure, we'll continue our hyperviligence!
This was after the sedative was given last night. She was exhausted to begin with, so the sucker really did the trick. (Notice the side rails are up?) She was goofy and this morning said she was super dizzy. BUT, she slept through the night for literally the first time in a couple of years and was so proud of herself that she didn't scratch herself.
Snug as a bug in a rug. During the day wraps, her face was covered as well, with openings for her eyes and mouth. Can't say Ms. M was a fan of that! There is no way that Ryan and I could have convinced her to get wrapped like this at home, even with her being on her "better" behavior for the nursing staff, she threw quite a major fit when we first did it. I have to admit, I would have felt pretty claustrophobic and uncomfortable as well. But I think she's seeing the benefits, so we've had a lot less resistance!
"Mom, we're going to be really bored of each other by the end of this, right?"
This is what Morgan has told me a couple of times today, "Mom, we're going to get really bored of each other by the end of this, right?" She might get bored of me, however, I think it might be impossible to get bored of Morgan. She's a nut, an absolute nut. She told everyone today her name is Margaret and she's 4 years old. What? I can't rest for a second because I never have any idea what she might be saying or doing! Her giggle has been infectious throughout the 2nd floor of NJH, but her screams of frustration have also been heard. You definitely always know what this girl is feeling. As the nurse said today, "She's has a bit of a drama gene, right?" Ummm, yeah.
We've been here since Sunday night, but it feels we've been here a week and a half already.... In a good way because I have learned 6 years worth of information as to how to take care of Morgan. I can't believe how little we knew, no wonder her skin has looked like raw chicken. In a bad way, because we are exhausted! It's kind of like being at summer camp, but you're in a hospital setting. For example, we were awakened this morning bright and early (like summer camp, not even time to get dressed, luckily I slept in sweats!, or have coffee, or brush my teeth) to begin treatments, tests, etc. (like a hospital). I am in even more in awe of families who do this when their child's life is at stake. It is beyond fathom.
A little ice cream cone before we hit the friendly skies. You never know what they may take out of Morgan's diet, so I figured we may as well have at least one last hurrah with our friend, dairy!
Thanks to the Hamiltons, this little girl was entertained on the flight... Unfortunately, her fingers and mouth are not connected, meaning she can use both at the same time. She talked the ENTIRE flight. I now am aware of every conversation she has ever had or overheard, in fine detail.
Oh how we love this tooth fairy dog, compliments of Grandma Dolly! This little dog has come along to all of our treatments and tests.
When we first got to National Jewish, we were immediately shuttled to the room we would spend the next 36 hours. Because of Morgan's experience with infections, we were quarantined until they could determine she did not have MRSA. I opened her backpack to get out some activities, and what do I find? Yes, a whoopie cushion! I had no idea she even had this thing. Better yet, when our treatment team came into our room for the first time, yep, she sat on it. I wish you could have seen the doctor's face. It was a mixture of shock and "oh crap," I am going to have my hands full with this little lady! Yes, you are Dr. Abbott!g
Good Ole Ronnie McD has sponsored the play area. We haven't spent too much time there because there hasn't been much time to play! But that's good, we can play in Boise, we're here to pick their brains!
We've been here since Sunday night, but it feels we've been here a week and a half already.... In a good way because I have learned 6 years worth of information as to how to take care of Morgan. I can't believe how little we knew, no wonder her skin has looked like raw chicken. In a bad way, because we are exhausted! It's kind of like being at summer camp, but you're in a hospital setting. For example, we were awakened this morning bright and early (like summer camp, not even time to get dressed, luckily I slept in sweats!, or have coffee, or brush my teeth) to begin treatments, tests, etc. (like a hospital). I am in even more in awe of families who do this when their child's life is at stake. It is beyond fathom.
A little ice cream cone before we hit the friendly skies. You never know what they may take out of Morgan's diet, so I figured we may as well have at least one last hurrah with our friend, dairy!
Thanks to the Hamiltons, this little girl was entertained on the flight... Unfortunately, her fingers and mouth are not connected, meaning she can use both at the same time. She talked the ENTIRE flight. I now am aware of every conversation she has ever had or overheard, in fine detail.
Oh how we love this tooth fairy dog, compliments of Grandma Dolly! This little dog has come along to all of our treatments and tests.
When we first got to National Jewish, we were immediately shuttled to the room we would spend the next 36 hours. Because of Morgan's experience with infections, we were quarantined until they could determine she did not have MRSA. I opened her backpack to get out some activities, and what do I find? Yes, a whoopie cushion! I had no idea she even had this thing. Better yet, when our treatment team came into our room for the first time, yep, she sat on it. I wish you could have seen the doctor's face. It was a mixture of shock and "oh crap," I am going to have my hands full with this little lady! Yes, you are Dr. Abbott!g
Good Ole Ronnie McD has sponsored the play area. We haven't spent too much time there because there hasn't been much time to play! But that's good, we can play in Boise, we're here to pick their brains!
Thursday, September 9, 2010
Good-bye Boise... Hello Denver!
If someone had told me 6 years ago that I would have a little girl whose eczema was so severe that she would lose sleep from the constant itching, have oozing sores all over her body (eliciting many a random question), have some social concerns (due to the aforementioned questions, stares and comments), and would lead to her body becoming resistant to antibiotics due to the constant application and administration of medication, I would have looked at them with a funny look. If they would have said that this condition would become so severe that we would search and search for a treatment program that could alleviate these issues and that it would cost as much as several tropical vacations AND that we would willingly sign up for this... I would look for the crack pipe that this person must be smoking from. No way, I would have said. No way could this "little" condition that is randomly mentioned in baby books become so severe and impact our lives in so many ways.
And the food allergies, oh the food allergies! When we first started down the food allergy path, starting with a milk and egg allergy, I remember thinking, "Well thank God she's not allergic to peanuts." Oh but wait, she is allergic to peanuts, and tree nuts, and fish, and sesame and eggs... Again, if someone told me 6 years ago that these allergies would literally wake me up in the middle of the night with nightmares that some factory worker in some random food manufacturing plant is finishing up his peanut butter sandwich and he doesn't wash his hands, I would have started the "hyena Sarah laugh" I do when something is really silly. In this nightmare, not only does he not wash his hands, but then he touches the bagel he is making, which ends up on my daughter's breakfast plate. One bite and then she's having an anaphylactic reaction and we speed to the hospital as her throat closes.... If someone had told me that this nightmare wouldn't only be a dream but would happen a couple of times, I would have been devastated and shocked. So here we are, gladly trading in some tropical vacations to hopefully get more answers about our food allergies (I say "our" because really, the Kearneys are in this together) and to hopefully get this girl some relief (sleeping through the night for the first time in 6 years would be neat!) We will be gone for three weeks and I will be sure to keep all of you posted as to our adventures at National Jewish Hospital. I am so thankful for all of the sweet words, thoughts and prayers we've had from our family and friends, you all have no idea how much we appreciate the love. That being said, we do recognize just how lucky we are this is our issue and we are not facing something else. In fact, one of our Denver activities are going to be to visit kids who are much, much sicker than Morgan and give away some gifts for their entertainment, as well as bring some goodies to the Ronald McDonald House because let's be real, life could be much more difficult and heartbreaking for us. So off to Denver we go.... We'll miss you Boise!!!!
And the food allergies, oh the food allergies! When we first started down the food allergy path, starting with a milk and egg allergy, I remember thinking, "Well thank God she's not allergic to peanuts." Oh but wait, she is allergic to peanuts, and tree nuts, and fish, and sesame and eggs... Again, if someone told me 6 years ago that these allergies would literally wake me up in the middle of the night with nightmares that some factory worker in some random food manufacturing plant is finishing up his peanut butter sandwich and he doesn't wash his hands, I would have started the "hyena Sarah laugh" I do when something is really silly. In this nightmare, not only does he not wash his hands, but then he touches the bagel he is making, which ends up on my daughter's breakfast plate. One bite and then she's having an anaphylactic reaction and we speed to the hospital as her throat closes.... If someone had told me that this nightmare wouldn't only be a dream but would happen a couple of times, I would have been devastated and shocked. So here we are, gladly trading in some tropical vacations to hopefully get more answers about our food allergies (I say "our" because really, the Kearneys are in this together) and to hopefully get this girl some relief (sleeping through the night for the first time in 6 years would be neat!) We will be gone for three weeks and I will be sure to keep all of you posted as to our adventures at National Jewish Hospital. I am so thankful for all of the sweet words, thoughts and prayers we've had from our family and friends, you all have no idea how much we appreciate the love. That being said, we do recognize just how lucky we are this is our issue and we are not facing something else. In fact, one of our Denver activities are going to be to visit kids who are much, much sicker than Morgan and give away some gifts for their entertainment, as well as bring some goodies to the Ronald McDonald House because let's be real, life could be much more difficult and heartbreaking for us. So off to Denver we go.... We'll miss you Boise!!!!
Monday, August 30, 2010
They say it's your birthday!
Morgan is 6! It's official, she's old, we're old, we're just a bunch of geriatrics over here. I'm okay with Morgan turning 6, but I'm kind of having an issue or two that on her next birthday, she'll be 7. How can someone in their mid-20's have a seven year old? Oh wait, that's right, chronologically I am in mid-30's, it's just mentally I am stuck in my 20's. Needless to say, we're wild about this little girl. Little did I know that on August 29th, not only would a baby girl arrive in this world, but half of my heart would leave my body too.
These pictures are out of order (sorry!). Morgan celebrating with her buddies!
We bought Morgan a motorized razor scooter for her birthday, because yes, we like to spend money on ER bills. We thought practicing in the basement was a good idea, until on the first run Morgan ran into the wall. What good parents we are!
Daddy presenting the present.
Aidan happy that he is finally the proud owner of a ninja zhu-zhu pet.
Hopefully, Morgan will take to her guitar lessons and profits made from her musical debut will offset our medical bills related to the motorized scooter.
Breakfast celebration. A Kearney favorite... pancakes, homemade, jam and whip cream. Who are we kidding, we don't just eat this healthy treat on special occasions, unless you consider every Saturday and Sunday morning a special occasion.
Byron, the luau dog, waiting to greet guests at Morgan's luau celebration.
Morgan and Aidan waiting for guests to arrive....
Thank you Mema and Papa for making the trek over and helping to make "6" a special celebration for Ms. M!
Pin the tail on the donkey with two of Morgan's favorite people, Petra and Ryder!
These pictures are out of order (sorry!). Morgan celebrating with her buddies!
We bought Morgan a motorized razor scooter for her birthday, because yes, we like to spend money on ER bills. We thought practicing in the basement was a good idea, until on the first run Morgan ran into the wall. What good parents we are!
Daddy presenting the present.
Aidan happy that he is finally the proud owner of a ninja zhu-zhu pet.
Hopefully, Morgan will take to her guitar lessons and profits made from her musical debut will offset our medical bills related to the motorized scooter.
Breakfast celebration. A Kearney favorite... pancakes, homemade, jam and whip cream. Who are we kidding, we don't just eat this healthy treat on special occasions, unless you consider every Saturday and Sunday morning a special occasion.
Byron, the luau dog, waiting to greet guests at Morgan's luau celebration.
Morgan and Aidan waiting for guests to arrive....
Thank you Mema and Papa for making the trek over and helping to make "6" a special celebration for Ms. M!
Pin the tail on the donkey with two of Morgan's favorite people, Petra and Ryder!
Table Rock - Part Deaux
Papa and Mema Kearney surprised Morgan for her 6th birthday... So we took them on a hike to Table Rock, part II for the Boise Kearneys!
Ryan and Jim, collaborating to find cures for all that ills the world.
Morgan's making a fashion statement with her hiking attire. Soccer shirt, ballet tutu skirt, sparkle shoes. Yes, fashionistas of the world, you will copy this look, you know you will.
Papa, Mema, Morgan and Aidan. Happy as can be!
Ryan and Jim, collaborating to find cures for all that ills the world.
Morgan's making a fashion statement with her hiking attire. Soccer shirt, ballet tutu skirt, sparkle shoes. Yes, fashionistas of the world, you will copy this look, you know you will.
Papa, Mema, Morgan and Aidan. Happy as can be!
I Heart Summer....Random Pictures of Summertime Fun!
Since we've had about a 30 degree drop in the last couple of days, I am already getting nostalgic about the passing summer season. How the Kearneys love summertime!!!
Ryan. (It's a Monday, so no, I can't muster the brain power to think of a better caption.)
Ryder and Jeremy doing a little father/son wakeboarding!
Ryder making skiing look really easy.
Buddies. I love Aidan's closed eye smile.
We tried to get to the kids to take a nice picture with me. Thanks Morgan, that face is nice.
Ryan. (It's a Monday, so no, I can't muster the brain power to think of a better caption.)
Ryder and Jeremy doing a little father/son wakeboarding!
Ryder making skiing look really easy.
Buddies. I love Aidan's closed eye smile.
We tried to get to the kids to take a nice picture with me. Thanks Morgan, that face is nice.
Subscribe to:
Posts (Atom)
