This last week has brought a great tragedy by way of devastating tornadoes to the midwest. So close to home, Jopin, MO was hit last Sunday, and the town of 50,000 has literally been obliterated. The death toll was at 123 last count, and they are still doing search and *rescue*. Schools, homes, businesses and the hospital have all but been wiped out.
My heart was hurting and I was crying while on the elliptical the other night watching ads across the TV screen asking "Have you seen this person?" with phone number and brief description of a family's loved one's last known place on Sunday-and whom they have yet to find. A 16mo old child ripped from his Mother's arms, a husband and his two children at the Home Depot, a high schooler playing basketball with a friend. I cannot watch the television anymore.
Then today, the sirens sounded at our house, funnel clouds spotted all over the KC metro area. My kids spent an hour huddled under their art class tables, or in a hallway. I, watching the TV and texting reports to my sister and her son stuck in a building at the zoo while on a field trip, to my step-mom stuck in a stairwell at work, both listening to the sirens all around them, and not knowing what was going on. After what had recently happened in Joplin, everyone was anxious and scared that we would be next. Those of you who don't live where tornadoes occur, drills are done as early as pre-school age here, most all of us have homes with concrete basements and little tornado boxes packed and down there ready for us with water, tennis shoes, a flashlight and weather radio-of course ours has a TON more, but to each their own. But being prepared, does not make it any less scary.
Though today's storms not nearly as bad as what tore through Joplin on Sunday, a small town near us-Sedalia, MO, was hit by one-no loss of life-but again, loss to homes, businesses and schools.
The response to Joplin by friends and family members to help has been amazing-my sister Kate, an EMT with KCFD loaded a bus Monday evening headed there to lend a hand-along with 5 additional ambulance crews and numerous engine companies. One of KCPD's Tactical Teams and a Traffic Enforcement team have been there all week-the reports coming back from a friend, and a wife of one of the Traffic guys, is just gut-wrenching. A dear friends husband is packed to leave with his Tactical Team tomorrow and is humbled at the thought of being sent to help these people and though is leaving his family-hopes to help provide some comfort to those in need-in his words, he "only wished he could have gone sooner". Andrea is proud of you Troy-and I to be your friend! An officer who works for Brian called us Sunday night, and was already headed down to lend a helping hand-something Todd is known for! And I've only named a few of the people I know who are down there helping this town dig out and find family members and hopefully in all that ruble-maybe a miracle survivor.
Please keep the town of Joplin, Missouri and it's residents, in your thoughts and prayers in the coming months as they try to come to terms with the tragedy Mother Nature bestowed upon them this sad day in May. Please pray for their peace, and their survival will to rebuild and move forward. Please keep those sent to help in your thoughts as they perform the daunting task of trying to find survivors, though know they will most likely be giving families the much needed closure of losing a loved one. Please donate blood over the summer to help replenish the amount our local banks have sent down to Joplin.
And most of all-tell those that you care for how much you love them, how much they mean to you, and how you would be lost without them.
For we are never promised tomorrow.
We only have today.
Make it count.
Thursday, May 26, 2011
Tuesday, May 10, 2011
Heart Walk 2011
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| Ethan 1 hour post-op open heart 6/2005 |
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| Ethan 6 days post-op open heart 6/2005 |
It's that time of year again, the AHA Heart Walk is right around the corner. We will again be walking with CHD Families, in honor of all our kiddos affected by congenital heart defects.
This year is different for us though, as Ethan has always been a 'heart kid' without the typical problems of a 'heart kid'. The majority of his struggles in the past have been because of his Chromosomal anomaly 18q-. Yes, he had open heart surgery at 15 months old, but came through with flying colors and was home 9 days post-op, meds for a few months, follow ups for life, but nothing like the struggles some of the kiddos I know have gone through.
This year is different-Ethan is in heart failure and no one knows why. His pulmonary valve is leaking greatly, causing the majority of the failure. This valve was created 5 years ago during his open heart repair by opening his pulmonary arterty to allow for greater blood flow-due to the size and constriction it was causing, and a 'flap' was made to work like a valve. We were assured it would continue to work for Ethan well into his late teens-he is almost 5 years out from that surgery and it is already failing.
So why is this walk even more so important to us? Because all the funds raised through the CHD Families team members will stay right here in KC to help figure out why something like this happened to Ethan. To hopefully help answer some of the questions all heart parents have-
why?
how?
and can it be fixed?
Unfortunately for too many parents I know, those answers will come too late. Too late to help their child. But it's not too late to help so many others. Please consider making a donation to help answer those questions, because though too late for some, it is only with those answers that we will someday be able to put an end to precious lives lost to congenital heart defects.
No donation is too small-feel free to mail a check made out to the AHA to me-email me and I will send you our address karawley03@yahoo.com
or donate on our online page at:
http://heartwalk.kintera.org/kansascity/ethanrawley
Thanks to those who have already generously donated-Grandma Sharon and The Clapp Family-thank you so much for helping us reach our goal!!
I included some of my favorite pics of our boy below-all of these were taken by a dear friend Brandi Wisdom of BNW Photography-friend her on FB and see all her gorgeous work! The very last picture was taken at our home-Ethan had been in the hospital and had just come home-she didn't want to mess up his routine, so she and her husband packed up the stuff they needed and headed to our house! The middle pics were taken in the playground in front of Children's Mercy because Ethan was IN the hospital at the time we were scheduled to have our family photos taken, and instead of rescheduling-she packed up her stuff and headed down there to take our pics. She has always been so patient and wonderful with all my kids-but especially Ethan and I just had to share these with you.
How can you look at any of these pics and NOT want to donate to help him and all the other precious kiddos out there just like him?????
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| Ethan Charles Rawley Oct 2010 |
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| Ethan laughing at his Daddy hysterically Oct. 2010 |
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| FAVORITE. PICTURE. EVER. Nov 2009-taken by Brandi Wisdom BNW Photography |
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| Ethan-Nov 2009 (taken outside Children's Mercy-Ethan was hospitalized and Brandi came down and took our family pics-hence the IV in his hand!) |
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| Christmas 2007 |
Tuesday, May 3, 2011
Home Sweet Home-tweet Jesus!
Carepages won't let me post the update for some reason-so it's on here!
We will all be sleeping comfortably in our own beds tonight, no more cage crib for Ethan, recliner chair for Brian, or couch bed for me!!
Got home late this afternoon, after much discussion of taking Ethan to the cath lab to look at his pulmonary vessels and valve. After the Anesthesiologist put his stethoscope on E's chest and listened for about 2 seconds he put the kabash on taking him to the cath lab! Ethan has to go under anesthesia for a cath, and only a handful of anesthesiologists at Mercy do the cardiac kids and only when they are in tip-top shape and it's not an emergency. The team was thinking they might keep him through the rest of this week and get him in the cath lab before letting us go home. The problem is that since he has been on Lasix for the last week, his lungs sound really wet-he is coughing to move stuff around, but Ethan is not strong enough to have a productive, clearing cough. Hence-not safe to go under. We are ok with that and happily took our little guy home. He will sleep on oxygen for the next few nights-as we are starting to see some swelling in his feet and slight color change again. We will watch him closely and we see Dr Kaine again in two weeks for an echo and ekg and overall assesment of how the home meds are working. If needed, we can just put the van on auto-pilot, cause it sure knows its own way to the Mercy! I'm half tempted not to unpack a darn thing. Kinda like my theory of going to clinic-if I pack a bag, he doesn't get admitted, if I don't-well, you know that story well by now!!
This is short and sweet, cause everyone here but Brian and I are in bed, and we are headed there shortly. I want to say Thank You to all our family and friends, our neighbors and the KCPD Care Team-you all helped make a very stressful situation much less so! Most kids take a village to raise, this one a country-and you've all been a much appreciated part of that by helping out with meals, the other kids, coming to hang out with us at the hospital, phone calls and emails of support and of course lots of prayers!
We love you all very much!
Good night, sleep tight, I know we will!!!
We will all be sleeping comfortably in our own beds tonight, no more cage crib for Ethan, recliner chair for Brian, or couch bed for me!!
Got home late this afternoon, after much discussion of taking Ethan to the cath lab to look at his pulmonary vessels and valve. After the Anesthesiologist put his stethoscope on E's chest and listened for about 2 seconds he put the kabash on taking him to the cath lab! Ethan has to go under anesthesia for a cath, and only a handful of anesthesiologists at Mercy do the cardiac kids and only when they are in tip-top shape and it's not an emergency. The team was thinking they might keep him through the rest of this week and get him in the cath lab before letting us go home. The problem is that since he has been on Lasix for the last week, his lungs sound really wet-he is coughing to move stuff around, but Ethan is not strong enough to have a productive, clearing cough. Hence-not safe to go under. We are ok with that and happily took our little guy home. He will sleep on oxygen for the next few nights-as we are starting to see some swelling in his feet and slight color change again. We will watch him closely and we see Dr Kaine again in two weeks for an echo and ekg and overall assesment of how the home meds are working. If needed, we can just put the van on auto-pilot, cause it sure knows its own way to the Mercy! I'm half tempted not to unpack a darn thing. Kinda like my theory of going to clinic-if I pack a bag, he doesn't get admitted, if I don't-well, you know that story well by now!!
This is short and sweet, cause everyone here but Brian and I are in bed, and we are headed there shortly. I want to say Thank You to all our family and friends, our neighbors and the KCPD Care Team-you all helped make a very stressful situation much less so! Most kids take a village to raise, this one a country-and you've all been a much appreciated part of that by helping out with meals, the other kids, coming to hang out with us at the hospital, phone calls and emails of support and of course lots of prayers!
We love you all very much!
Good night, sleep tight, I know we will!!!
Friday, April 29, 2011
Prince William got married, Prince Ethan moved out of the PICU!
Yep-that's right, Ethan's out of the PICU and back on 4 Sutherland tonight. I'm sure Kate and Wills understood us missing the Royal Wedding whilst the bald kid was hospitalized.
I didn't want to put every update on this blog, as Ethan has a carepage dedicated strictly to him-so feel free to follow the events that have led us to where we are today by following this link-it also goes back quite a few years and if you need some help sleeping, feel free to read all about our little Prince!
http://www.carepages.com/carepages/EthanR/updates
if you've never read his carepage before, you will have to create a log-in with password-don't worry no crazy emails or spam-just a great way to keep friends and family apprised of everything when the last thing I want to do is call and tell the same story to 15,000 people.
Yep, cause I know 15,000 people who would want to know what's going on in my kid's life....
Anyway-missed the Royal Wedding today, so I am planning to throw my own version of one real soon-
what girl doesn't want to wear her wedding dress again? and what girl doesn't want an excuse to wear one of those crazy-ass hats? I have the solution. Calling all commoners, don your wedding dress, flip-flops for comfort and the craziest hat you can find or create and let's have a Royal Reception! Complete with tea and crumpets and beer, cause what Princess doesn't like a good, cold beer? Bring your Prince, or not, actually probably not, we will surely have more fun without them anyway!
So, let me get the Palace cleaned and the little Prince home and I'll set a date,
A Royal date, and you're all invited!
I didn't want to put every update on this blog, as Ethan has a carepage dedicated strictly to him-so feel free to follow the events that have led us to where we are today by following this link-it also goes back quite a few years and if you need some help sleeping, feel free to read all about our little Prince!
http://www.carepages.com/carepages/EthanR/updates
if you've never read his carepage before, you will have to create a log-in with password-don't worry no crazy emails or spam-just a great way to keep friends and family apprised of everything when the last thing I want to do is call and tell the same story to 15,000 people.
Yep, cause I know 15,000 people who would want to know what's going on in my kid's life....
Anyway-missed the Royal Wedding today, so I am planning to throw my own version of one real soon-
what girl doesn't want to wear her wedding dress again? and what girl doesn't want an excuse to wear one of those crazy-ass hats? I have the solution. Calling all commoners, don your wedding dress, flip-flops for comfort and the craziest hat you can find or create and let's have a Royal Reception! Complete with tea and crumpets and beer, cause what Princess doesn't like a good, cold beer? Bring your Prince, or not, actually probably not, we will surely have more fun without them anyway!
So, let me get the Palace cleaned and the little Prince home and I'll set a date,
A Royal date, and you're all invited!
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| Ethan with his Zhu Zhu pet on his shoulder! |
Tuesday, April 26, 2011
3rd admission in 11 days....I'm feeling 40 now!
Yep, since my last post about Ethan being admitted, he has gone home and come back twice in 11 days. After the first admission he was home for 2 days and at his follow-up discharge appointment in clinic on Friday the 22nd, they took one look and listen at him and put him back in over the weekend. That admission they finally did blood work because his chest x-ray again showed no solid pneumonia, and his virus panel was negative for everything. The blood work showed an elevated white count of 17,000 (high end of normal would be 11,000) which indicates an infection of some type. They started him on some antibiotic and sent him home on Sunday once they got his oxygen weaned down to room air while awake and 1/4 liter while sleeping.
Sunday day and evening he was marvelous! Back to his normal self, laughing, rolling around, just all around acting like a goof ball. I put him in bed and on 1/4 liter of O's just to be safe, only to be woken at 1am hearing him fuss. When I checked on him, he was working really hard to breathe, looked to be a little puffy around his face and neck, hands and feet, and began retching. I turned his oxygen up to 1 liter and he seemed to get a little more comfortable, but he was very fitful the rest of the night and pretty miserable. All day Monday he was not terrible-but not great. He continued to retch, so I kept turning his feeds down throughout the day-but when the vomiting began at 5:30pm-I knew we weren't going to be staying home for much longer. At the ER his sats were 82 on 1 liter so in he came. He is on 4 Sutherland room 3 right now being followed by the Purple Team again whose attending is Dr. Keith Mann. I was thrilled to find out that Dr. Mann is the attending this week and going to be taking care of Ethan! He is the physician who began the Family as Faculty program where residents are assigned a medically complex kid to home visit, follow to clinic visits and just try to get an overall view of what it's like to have a kiddo like Ethan. We had two residents assigned to Ethan whose rotation was in February where they visited our home and got to know a little about our special guy and our lives. Anyway-I am a HUGE supporter of the program and thus of Dr Mann and feel lucky he's taking care of us this week!
Where are we right now??? Ethan's blood pressure is running a low, his heart rate is high, his oxygen is on 1 liter to keep him above 90, he coughed most of the morning so far, and his hands, face and feet are puffy. His belly and chest are distended now too. His white count is up to 27,000 after having been on antibiotic for 4 days indicating it's not touching whatever infecction he has. His BNP, or brain natriuretic peptide, one of the labs they did last night was elevated-WAY elevated-3,350, whereas <100 is normal. This is the lab work used to indicate that congestive heart failure is likely. Soooo, he is getting an echo today, an x-ray of his belly, some more lab work, and a dose of lasix. He has never been in congestive heart failure before, and it just may be some right sided failure this time due to his respiratory compromise, or it may not be. The echo will give us more definitive answers, and what we see him do with the lasix. Right now we are in a holding pattern. I will update as we know more. In the meantime we are hanging out listening to Taylor Swift and I'm catching up on the first 3 seasons of Grey's Anatomy!
Below are a couple of pictures from my Fabulous 40th Birthday party from last weekend-I have tons more-and will load them on my FB page soon. I want to say Thanks to all of my family who helped pull it off while Ethan was in the hospital! My Aunts Kathy and Mici, who stayed with us last weekend, helped get all the meat smoked and made the beans and salsa and corn confetti salad, did laundry, and dishes, and kept Parker busy while we ran around. My cousins Tony and Jim and sister Kim who set up the clubhouse tables and decorations and made the place look fabulous! Michelle, who made all the delicious cupcakes! My Mom, who made the potato and macaroni salad, and cut and blinged cupcake toppers. My Dad and Teresa who went down to the hospital and sat with stinky during the party so he wouldn't be alone. Thank you, thank you, thank you everyone! It was a wonderfully, fantastic party that won't be soon forgotten, I love you all very much! To all my friends and family who atttended-thank you for the gifts and cards and for being there. One thing I've learned in the last 40 years is that I have some pretty amazing people in my life that I wouldn't trade for the world!!
Gotta run-Ethan is not comfortable and is wanting to be held-which is quite an ordeal in itself!
Sunday, April 17, 2011
Day 3-whiny + pitiful = exhausting!
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| love the tongue! |
Brian, Parker, my Mom and I went to Hailey's last volleyball tourney of the club season, while Grandpa Chuck hung out with E for a while. Hailey's team took 3rd place and got bronze medals-and we got lots of great pics-will post soon!
The Purple Team decided to go ahead and do an IVIG treatment on stinky, and started the Gamunex at 10:30 this morning-it just finished, and they will have one more set of vitals to take on him in 30 minutes -then he can be left alone to sleep. Since he has never had an IVIG treatment, it had to run over 12 hours with vitals taken every hour-whereas normally it would only take 6 hours, or an hour if we do it subcutaneous at home. I don't care how long it takes-as long as he's getting it and showing no signs of an adverse reaction-he can continue it at home!
His oxygen has been weaned down to 1 liter-and he's maintaining in the low 90's. He did have a bad episode this morning where he would only mouth breathe, and they had to put a mask on him and crank him up to 3 1/2 liters for a few hours. He seems to be over that little meltdown now thank goodness-but that doesn't mean he spared anyone any other temper tantrums-those seem to be the norm today. I'm hoping he wakes up Monday morning in a much better mood. The only consolation for him right now is for us to ignore him and crank up his Taylor Swift CD-did I mention how much he LOVES Taylor Swift. Turn on her new CD-thanks Phillips Family for getting it for him for his b-day-and he stops wimpering for a while, or at least long enough to listen to his girlfriend sing for a while!
So that's where we are hanging for now-still no virus panel results back, and the adrenal insufficiency hasn't been determined yet to be worse or not-we should find all of that out tomorrow. He's not out of the woods yet, and I will update as we know more. In the meantime-Ethan sleeping means Mom needs to sleep, and he's sawing logs right now-so that 's my cue....
Please keep Brian's long time childhood friend Steve in your prayers, his Mother Marty (and like Brian's second Mother) is fighting Ovarian cancer right now, and things are looking pretty grim. They live in Tennessee, and as much as Brian would like to go down there and show his support, we kind of have a full plate here right now. Steve's dad, Roger, was my and Brian's wedding pastor and they have a very special place in our hearts, so please keep them in your thoughts and prayers for peace and comfort in the coming days.
love, hugs and prayers,
K
Someone told Ethan we have plans.....
we have plans to get family pictures taken? Ethan gets sick and gets admitted.
we have plans to go to the Weston Irish Fest? Ethan gets sick and gets admitted.
we have family in town for the holidays? Ethan gets sick and gets admitted.
we set the date for Ethan's birthday party? Ethan gets sick and gets admitted.
Seeing the pattern here??? We used to joke around that we couldn't share our plans with Ethan, or discuss them out loud around him-or we would inevitably be jinxed.
Well, leave it to the boy who loves his routine and adapts terribly to change-I have plans to run, and I mean RUN the Trolley Run for the first time ever tomorrow morning (I've walked it pushing baldy in the stroller for years)AND guess who's sick and in the hospital?
My FAB 40th B-day party is next Friday, and we have some of my favorite relatives coming in town to celebrate with us, and guess who's sick and in the hospital?
Yep, you guessed it-Ethan.
I know what jinxed us-we were in clinic on Tuesday doing the boy's intake interview for the Medical Coordination Clinic-and he was a PEACH! I mean charming as heck! Smiling, laughing, showing off for the new staff, following commands when we would ask to see his 'piggies' or tell him if he wanted out of his wheelchair he needed to raise his arms. And he was ON! We bragged about everything Ethan-height, weight, feeds, pooping, peeing -you know, all the important stuff. I *gasp* even mentioned that I would like to see about getting back into the amazing Jodi Gamis -OT Feeding Specialist Extraordinaire-to work on some oral stuff that would maybe eventually lead us into some oral intake again someday.
That was Tuesday morning.
Wednesday was good.
Thursday bad.
Friday TERRIBLE. He came home from school on Thursday with a note that said he took a nap that morning and another one in the afternoon which he had to be woken from to participate in music. That should have been our first sign...which we ignored. First mistake.
The second one was when Brian put him to bed at 7:30pm that night and he was still asleep when I got home Friday morning at 7:30am and we didn't take him in then.
Needless to say, I was not surprised when Brian woke me at 12:30 and said we've got to go NOW.
Rolling into Children's Urgent Care North with a kid like Ethan usually gets you taken right back. Rolling in there with a kid like Ethan whose sats are in the 70's gets you downtown in an ambulance pretty darn quick!
So, here we've been since Friday afternoon. On 3-5 liters of oxygen at any given time, lethargic and crabby.
Negative for Flu, RSV and Pneumonia-just some 'peri-hilar thickening and haziness' on his Chest x-ray. Pretty normal for the bald kid. Sats in the 70's-not so normal-even with 'hazy' looking lungs.
He was initially admitted under Dr. Kaine-Ethan's Cardiologist for fear he was in congestive heart failure. BUT-upon admission Dr Kaine came in and took a good look at E, and felt that CHF is not the case right now(Thank goodness) and transferred him to the General Peds team with the agreement that if anything changed over the weekend, Cardio would happily take him back. We are ok with the transfer-though we love Cardio-I like the Gen Peds team too, and his issues right now are not cardiac related. What are they related to? My best guess? The fact that he has been taken off his Immunoglobulin infusions since January due to an adverse reaction to the concentration of the brand we had to switch him to per our insurance.
For those of you remember fall of 2007 and most of 2008-Ethan had 10 admissions in 9 months, was a DNR at one point and we thought we would never be bringing him home, let alone celebrating another birthday with him! We visited Dr Portnoy in Allergy/Immunology and he found the cause....Ethan has CVID or Common Variable Immune Deficiency. So almost two years later of us doing home subcutaneous infusions weekly of immunoglobulin-we went from all those admissions in 9 months to 2 in two years! So, do I think that was the fix? YES-especially since we had to stop the infusions in January and we've had more sick days than normal since then.
Why did we have to stop it you ask? He started out on Vivaglobin-a concentration of 16%, which he did fabulously with for a year and a half. They stopped making the Vivaglobin-so insurance switched him to Hizentra-a concentration of 20%. Less volume, less time involved, but lots more reactions. Site reactions lasting two days, flushing face antihistamine reaction lasting 24-36 hours, and overall just plain crabbiness lasting from start of infusion until about one day before we were due to give his next one. All those combined made for a cranky kid and unhappy parents. Per Allergy-STOP immediately before the reactions get any worse, and wait til you hear from us about starting him on a new one-once the insurance company agrees to that -and to pay the $5000 a month it costs. And when did we get the phone call that all of this had been approved and he is due to get his first infusion of Gamunex C in the next two weeks??? Monday-yep, 4 days before admission! Oh well, that's how our boy rolls.
Over the two years on the infusions, he built up a nice immune system, but having been off for a few months now-our luck ran out, and so did his immunity to itty bitty viruses like rhinovirus (the common cold) and his body's ability to fight them off without needing to be hospitalized.
The Gen Peds team has contacted Immunology and they recommended checking his IgG, IgA, and IgE levels while he is here, and if low do an emergent IV infusion of IG if needed to boost him up. Easier said than done if we could actually get a good IV on the bald kid. Only 4 sticks this time to finally get one in his foot made Ethan a very unhappy boy! I don't think it will last to do an infusion through tomorrow if needed, but we will hope and pray.
The Gen Peds team also contacted Endocrine about E's adrenal insufficiency, and the possible need to do some stress dosing of hydrocortisone. YES was the answer-right away, right now and a higher dose than what we normally do at home during illnesses. ALSO-they recommend a re-test of his adrenal function to make sure it's not any worse than before and that we don't need to be medicating him all the time instead of just in times of stress-illness, prior to surgery, etc. Those results will be back in the morning, and the plan may change then. All of the symptoms Ethan had which brought us in this time coorelate with Addison's Syndrome, and adrenal crisis. I never put them together, because he has been so well in the last two years. But when he was initially diagnosed with adrenal insufficiency, we were warned about a possible lethargic state, accompanied by low blood pressure and GI issues which could put him in a coma-like state and possibly death to which we would have to give him a shot of dexamethasone and call 911 immediately. Fortunately this time wasn't like that -but well could have been had we let him linger on with this illness any longer before taking him in. Honestly-we are pretty on top of the little guy and he crashed hard and fast this time-I had no idea I would see sats of 70 when they hooked him up at UC. So I've learned my lesson this time, and I will be the crazy, over-bearing Mom now for a while again, until I feel like I can breathe a little easier.
Sorry so long, lots going on with the little guy-will update as soon as we know more.
Hailey's last volleyball tournament of the year is tomorrow-so GOOD LUCK CLUB NORTH 14-5's! Play hard and play to win-but most of all, enjoy the fabulous club season you all had! I am so proud of Hailey's success and drive to get over her injury and back on the court! Love you Hay Jay!!
love, hugs, and prayers,
K
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| Ethan riding the big rig to the Mercy! |
It's been a long time since we've had to keep our upcoming plans a secret from Ethan, but we seem to have fallen back into our old familiar ways of needing to do just that. It started quite a few years ago....we have plans to get family pictures taken? Ethan gets sick and gets admitted.
we have plans to go to the Weston Irish Fest? Ethan gets sick and gets admitted.
we have family in town for the holidays? Ethan gets sick and gets admitted.
we set the date for Ethan's birthday party? Ethan gets sick and gets admitted.
Seeing the pattern here??? We used to joke around that we couldn't share our plans with Ethan, or discuss them out loud around him-or we would inevitably be jinxed.
Well, leave it to the boy who loves his routine and adapts terribly to change-I have plans to run, and I mean RUN the Trolley Run for the first time ever tomorrow morning (I've walked it pushing baldy in the stroller for years)AND guess who's sick and in the hospital?
My FAB 40th B-day party is next Friday, and we have some of my favorite relatives coming in town to celebrate with us, and guess who's sick and in the hospital?
Yep, you guessed it-Ethan.
I know what jinxed us-we were in clinic on Tuesday doing the boy's intake interview for the Medical Coordination Clinic-and he was a PEACH! I mean charming as heck! Smiling, laughing, showing off for the new staff, following commands when we would ask to see his 'piggies' or tell him if he wanted out of his wheelchair he needed to raise his arms. And he was ON! We bragged about everything Ethan-height, weight, feeds, pooping, peeing -you know, all the important stuff. I *gasp* even mentioned that I would like to see about getting back into the amazing Jodi Gamis -OT Feeding Specialist Extraordinaire-to work on some oral stuff that would maybe eventually lead us into some oral intake again someday.
That was Tuesday morning.
Wednesday was good.
Thursday bad.
Friday TERRIBLE. He came home from school on Thursday with a note that said he took a nap that morning and another one in the afternoon which he had to be woken from to participate in music. That should have been our first sign...which we ignored. First mistake.
The second one was when Brian put him to bed at 7:30pm that night and he was still asleep when I got home Friday morning at 7:30am and we didn't take him in then.
Needless to say, I was not surprised when Brian woke me at 12:30 and said we've got to go NOW.
Rolling into Children's Urgent Care North with a kid like Ethan usually gets you taken right back. Rolling in there with a kid like Ethan whose sats are in the 70's gets you downtown in an ambulance pretty darn quick!
So, here we've been since Friday afternoon. On 3-5 liters of oxygen at any given time, lethargic and crabby.
Negative for Flu, RSV and Pneumonia-just some 'peri-hilar thickening and haziness' on his Chest x-ray. Pretty normal for the bald kid. Sats in the 70's-not so normal-even with 'hazy' looking lungs.
He was initially admitted under Dr. Kaine-Ethan's Cardiologist for fear he was in congestive heart failure. BUT-upon admission Dr Kaine came in and took a good look at E, and felt that CHF is not the case right now(Thank goodness) and transferred him to the General Peds team with the agreement that if anything changed over the weekend, Cardio would happily take him back. We are ok with the transfer-though we love Cardio-I like the Gen Peds team too, and his issues right now are not cardiac related. What are they related to? My best guess? The fact that he has been taken off his Immunoglobulin infusions since January due to an adverse reaction to the concentration of the brand we had to switch him to per our insurance.
For those of you remember fall of 2007 and most of 2008-Ethan had 10 admissions in 9 months, was a DNR at one point and we thought we would never be bringing him home, let alone celebrating another birthday with him! We visited Dr Portnoy in Allergy/Immunology and he found the cause....Ethan has CVID or Common Variable Immune Deficiency. So almost two years later of us doing home subcutaneous infusions weekly of immunoglobulin-we went from all those admissions in 9 months to 2 in two years! So, do I think that was the fix? YES-especially since we had to stop the infusions in January and we've had more sick days than normal since then.
Why did we have to stop it you ask? He started out on Vivaglobin-a concentration of 16%, which he did fabulously with for a year and a half. They stopped making the Vivaglobin-so insurance switched him to Hizentra-a concentration of 20%. Less volume, less time involved, but lots more reactions. Site reactions lasting two days, flushing face antihistamine reaction lasting 24-36 hours, and overall just plain crabbiness lasting from start of infusion until about one day before we were due to give his next one. All those combined made for a cranky kid and unhappy parents. Per Allergy-STOP immediately before the reactions get any worse, and wait til you hear from us about starting him on a new one-once the insurance company agrees to that -and to pay the $5000 a month it costs. And when did we get the phone call that all of this had been approved and he is due to get his first infusion of Gamunex C in the next two weeks??? Monday-yep, 4 days before admission! Oh well, that's how our boy rolls.
Over the two years on the infusions, he built up a nice immune system, but having been off for a few months now-our luck ran out, and so did his immunity to itty bitty viruses like rhinovirus (the common cold) and his body's ability to fight them off without needing to be hospitalized.
The Gen Peds team has contacted Immunology and they recommended checking his IgG, IgA, and IgE levels while he is here, and if low do an emergent IV infusion of IG if needed to boost him up. Easier said than done if we could actually get a good IV on the bald kid. Only 4 sticks this time to finally get one in his foot made Ethan a very unhappy boy! I don't think it will last to do an infusion through tomorrow if needed, but we will hope and pray.
The Gen Peds team also contacted Endocrine about E's adrenal insufficiency, and the possible need to do some stress dosing of hydrocortisone. YES was the answer-right away, right now and a higher dose than what we normally do at home during illnesses. ALSO-they recommend a re-test of his adrenal function to make sure it's not any worse than before and that we don't need to be medicating him all the time instead of just in times of stress-illness, prior to surgery, etc. Those results will be back in the morning, and the plan may change then. All of the symptoms Ethan had which brought us in this time coorelate with Addison's Syndrome, and adrenal crisis. I never put them together, because he has been so well in the last two years. But when he was initially diagnosed with adrenal insufficiency, we were warned about a possible lethargic state, accompanied by low blood pressure and GI issues which could put him in a coma-like state and possibly death to which we would have to give him a shot of dexamethasone and call 911 immediately. Fortunately this time wasn't like that -but well could have been had we let him linger on with this illness any longer before taking him in. Honestly-we are pretty on top of the little guy and he crashed hard and fast this time-I had no idea I would see sats of 70 when they hooked him up at UC. So I've learned my lesson this time, and I will be the crazy, over-bearing Mom now for a while again, until I feel like I can breathe a little easier.
Sorry so long, lots going on with the little guy-will update as soon as we know more.
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| Good Luck Hailey! |
love, hugs, and prayers,
K
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