Sunday, December 25, 2011
Wednesday, December 21, 2011
Love ya kid, but you stink.
Sunday, December 18, 2011
When you have a trach kid, you get used to a degree of trouble breathing. It usually sounds worse than it is (you get some funny looks when you're out and about), but nothing where you have to act immediately. When trach kids get sick, you usually suction dozens of times a day, usually thick goop, but nothing immediate. This was different and a little terrifying (even for me). It's terrifying for the little guy too :( Luckily our super awesome doc was great about emailing us back and gave us some tips that have seemed to help get over the hump of the nasties. No scary episodes for the last 8 hours. And thanks to my LM mama friends, I still have my sanity. It's so nice they speak "Hollandese" (a classic special needs poem.. http://www.our-kids.org/Archives/Holland.html )
So, after seeing every hour of the night last night (and probably the night before that too), I'm sure hoping for better tonight.
Friday, December 16, 2011
So, the doc had trouble getting his mouth open enough to do the work he needed to. This is not a new problem, although it's not one he's always had. In the process of trying to get his mouth open enough to do anything, 3 teeth popped out. This concerns me on many fronts... Speech, feeding, why his teeth fell out so easy, denistry, maxillofacial surgery.. to name a few. The doc was more than apologetic, and even paid the tooth fairy fees (isn't that hilarious!). I'm just sad my baby lost his first tooth without me, and that we've got years to wait for the new ones. Worse things could have happened, though.
Doc couldn't get in to cut out his tonsils and adenoids, so he used something called coblation. It's a radio frequency that shrinks down tissue. That was the plan for the swelling/LM on the base of his tongue. It's sometimes, but not often used for T&A too. The good news is, less pain, less risk of bleeding. Bad news is it doesn't completely remove the tonsils, but should significantly improve the situation. Apparently his upper airway was just massively swollen. His uvula was multiple sizes too large (and not in the good way, like the Grinch). Doc worked on that as well. Add in the T&A, the LM, the base of tongue and things were very tight. No small wonder swallowing food has been a massive challenge since his last surgery. I'm hoping against hope this will improve his eating.
I think that's the gist of it. Sounds like we gotta find some maxillofacial ppl... Unfortunately, Childrens (a top ranked hospital nationally) doesn't have them. Bummer.
But for now, I'm going to sleep. Because I love sleep. A lot.
Thursday, December 15, 2011
Wednesday, December 14, 2011
Tuesday, December 13, 2011
Tomorrow is phone call day... Call his nurse for his bloodwork numbers and call same day surgery for the details on when he has surgery. Gotta make a trip to the Ped, then we'll be ready to go on Thursday.
The sliver of good news is that we're planning on seeing our Cincinnati friends from when the kids were babies. We haven't seen them awhile, so it'll be great!
We got Luke Bearowitz this week, can't wait to post pics! Luke is a stuffed bear that carries Micah's story all around the world to other kids that have the same condition. They are called Traveling Awareness Bears. We had a super great fabulous time meeting with the girl bear and her friend this week! Leia (yeah.. Luke and Leia.. get it?) Bearowitz has the story of a little girl that lives about 2 hours away... and we got to hang out on Monday. Pics to come!
Sunday, December 11, 2011
I usually start packing about a week and a half before (I know, a little irrational). I have my super long list of what I need to pack for him, but always forget something anyway.... (Which reminds me, I need to order his meds tomorrow...) We're chancing it again and not bringing some of his bulkiest equipment. We've done it before, but only when we know it's only going to be a night. This time there's a chance he could be discharged to "local" and we'll be stuck there... Hoping not. Usually I push that if it's a possibility, but we aren't going to be in the Ronald McDonald House, and I'd rather not be stuck in a hotel room with him for any length of time.
I'm really hoping this one goes smoothly. No reason why it shouldn't. In theory, this should be easy. (Haha). We're planning on being down there til Monday, but if we can go home sooner, we'll just forego the loss of paying for the room...
In the meantime, I think I'm going to nap. I'm too stressed out. (It won't happen, but it's a nice thought!)
Micah is doing fine. He isn't sick, knock on wood. We have to take him to a doc Monday and Wednesday which is exactly what you don't want to do this time of year.... But you gotta do what you gotta do.... (Which reminds me, I need a pre-op physical form. Why didn't they send that?)
If you havcn't noticed before, I have a really short attention span. :)
Thursday, December 8, 2011
Sunday, December 4, 2011
I don't think I can find something that makes me want to jump off a cliff more than feeding my own kid. It's AWFUL. EVERYDAY. On the best days lately you'll get 5 bites... Of barbeque sauce. Dinner tonight was PUDDING. CHOCOLATE PUDDING. NOTHING.
Lately he's been spitting out (for lack of a better term) what he's drinking sometimes. My heavens, that's so irritating I could scream. He doesn't mean to, but ughhh.....
Here's what some other trach/g-tube moms said about feeding:
"I am constantly telling my friends that I would rather Harrison be g-tube free than trachless Obviously, if I really had a choice, I would take getting rid of the trach bc of the potential for long term damage, but as far as my patience goes, the g-tube drives me crazy. We have taken such gigantic steps backwards in the eating department, and most times I try practicing with harrison, we both end up in tears. "
"We were there for a loooong time. And it sucks. It sucks worse than the trach, worse than carrying a ventilator around......"
"Do you ever just get sick of it? I feel like we are stuck."
That is all.
Saturday, December 3, 2011
I need to write "The Parents Guide to Hospital Stays" book. If only the RMH was easier to get into. We're not even going to try, since we're only going to hopefully be there Thursday-Monday. Hopefully. Really hard to say... Stupid hotel policy.
Thursday, December 1, 2011
Tuesday, November 29, 2011
So, here goes... Nursing. We get 46 hours a week. We choose to use 5-8 hour nights to sleep (and a 5-6 hour day shift). Now to understand why we use it that way, you must know how much I need sleep. I don't do well on little sleep. At all.
When you have a trached child, you get a few choices. Sleep in the same room as the child, rely on a monitor, or have a nurse. I will not rely on a monitor. I can't rely on power to not go out, and not hear his monitor (his monitor has a battery backup). So, when we don't have a nurse, Travis and I sleep on his floor. I live in fear that if it were just one of us, we might not hear his monitor, so we both stay in there. It's really an irrational fear, but if you're kids' life depended on it, you might be irrational too.
This week has reminded me why... even though I sometimes can't stand our nurses, I need it. We had Micah 4 of the last 7 nights. Two nights ago, between 11pm and 6am, I was woke up... maybe 6 times? The feeding pump malfunctioned, and had to be reset. Feeding pump needed refilled (so did his humidity, but in my tired stupor, I forgot) Feeding pump needed shut off. Pulse ox alarmed. Pulse ox malfunctioned. Micah kicked me from his crib. Last night was a little better. I think Travis was up once, and I was up 2 times. Little punk decided to toss and turn from 4:45am on= very little sleep. He sleeps so much better when we're not in there.. probably because he can't hear Travis snoring!
In an ideal night, I get up at about 1:30am and 5:30am. That's if nothing beeps, nothing malfunctions, he doesn't need suctioned, and he stays asleep. (Read: this very rarely happens).
So, yeah. Nursing. Maybe someday Micah will be able to sleep without being attached at the foot, neck and belly. Until then...
Friday, November 25, 2011
Top 10 Manners for Interacting With Children of Special Needs and Their Families
By Julie Schenk Leach
I was asked to write this list for the MOPS group I'm a part of. It was included in a packet about manners and etiquette for children in various situations. I'm all about taking the fear out of interactions with my child, so I whole-heartedly agreed!
I didn't want the list to just be based on our personal opinions, though. I checked around on the internet and got a few ideas, but most of my research came as a result of a poll of a special needs group I have joined. I asked them what they would like to tell people to do or not do when dealing with their special needs child and his or her family. Let me tell you, the response was overwhelming! 50+ people responded with multiple suggestions. This is obviously a hot topic for special needs families and one that definitely needs to be addressed.
Therefore, I decided to also post the Top 10 list on here. I hope that it helps you know how to teach your children how to interact with special needs children.
Again, these are not solely my opinions. This is a compilation of suggestions from the families of children with a variety of special needs. We hope that you will take these thoughts into consideration the next time you encounter one of our wonderful children!!
Top 10 Manners for Interacting With Children of Special Needs and Their Families
1. It’s okay to ask questions. Children ask questions. That’s part of the learning process. Shushing your child if he or she asks questions about a special needs child suggests that the special needs child is something to be ashamed of. Instead, openly answer your child in a loving, gentle way that he or she can understand. If possible, try to link the child’s physical or mental disability to something your child already knows. If you aren’t sure about something and are close enough to the special needs family for them to hear your conversation, ask them to explain the machines or disability. Most parents would rather you ask about their child directly than avoid him or her. Plus, special needs parents are used to sharing about their child and will probably do a good job of explaining it in a way that your child can understand.
2. Be Tactful With Your Questions. Asking “What’s wrong with him?” is insulting to families who see their children as wonderful just the way they are. Instead, encourage your child to ask, “Why does she have to be in a wheelchair?” or “What is that machine for?” or "What's her story?" Of course, also help your child know when he or she has asked too many questions and is now just inconveniencing the family!
3. Staring is Embarrassing. When you see a special needs child out in public, turn your child’s staring into a teachable moment. Special needs families are probably used to staring, but that doesn’t mean that they enjoy it! Remember that special needs families are trying to live their lives just like you and don’t want to have to constantly feel “different.” Discuss with your child how he or she would feel if people stared at your family like that. Talk about how staring, even “sneaky staring,” makes people feel different and ashamed. Instead, encourage your child to smile, wave, and say “Hi!”
4. Start up a Conversation. As much as possible, children should speak to special needs children the same way they would speak to their own brother or sister (or maybe a little nicer!) :) While they may need to speak slower or repeat themselves (depending on the disability), it’s important that your child realize that special needs kids like to interact with other kids too! Often, these kids feel very isolated from their peers and they would welcome a friendly face.
5. Avoid Assumptions About Intelligence. Teach your child that a physical disability does not always equal a mental disability. Kids in wheelchairs or with physical deformities can often perform on the same academic level as peers, but are often treated by others as if they have learning disabilities.
6. Hands Off! Don’t touch a special needs child (especially the hands!) without permission from his or her parent. Often, kids with special needs have compromised immune systems that make them more susceptible to illnesses than other kids. Likewise, make sure sick children keep a safe distance from special needs children when possible. In addition, some children with sensory issues may not respond well to being touched by strangers. This could cause an episode that will draw even more unwanted attention to the special needs child. Take the cue from the parent, but err on the side of caution with this one.
7. Encourage Them to Find Common Ground. No two people are alike, but everyone has something in common. Regardless of differences, it's important to encourage children to look for things that they can relate to in others. Do both students adore the classroom hamster? Are both great basketball players? Finding common ground builds character and strengthens interactions between children.
8. Avoid Using the Term “Normal.” What’s normal, anyway?! The standard of “normal” changes depending on who you’re talking to, and I would venture to say that most of us would be out of the range of “normal” in at least one category! Using this term sends the message to kids that special needs kids are weird, or that there is something bad about them. Instead, use words like “typical” or the phrase “typically developing.” One mom says she likes, “radically distinctive!”
9. Be Conscious of Your Facial Expressions. Help your child to be aware of his or her facial expressions toward special needs children. You have no idea how many looks of disgust we have gotten, and that is hurtful to families who love their children unconditionally.
10. Don’t Show Pity. It is sometimes very difficult to see a child with major medical problems, but showing pity or saying, “I’m so sorry” sends a message to your child that this is a bad situation or something for which to apologize. For special needs families, they are just thankful to have their children and are doing their best to give them a fulfilling life. These families have fought through the hard times and are stronger for it, so take a cue from them and celebrate the small victories!
Thursday, November 24, 2011
For health, maybe not your "typical" health, but health.
For Micah, who has been through a lot and still has a wonderful wild, crazy spirit.
For Travis, who puts up with me (not very easy) and loves me no matter what.
For my parents who are willing to rearrange the schedules to accomodate babysitting Micah, since they're our only options (not that they'd ever say they'd mind)
For my in-laws, who I can hardly call in-laws since it's not the most positive term. Most people can't say they love their in laws. :)
For the blessing of raising little Micah, and how he is a joy to so many of you guys. We appreciate all the people that love him, even if you hardly know him. It's overwhelming sometimes to sit back and think about all the people that care so much about him, even if you've never met him or only met him once or twice.
I'm so thankful for our Cincinnati second family. They take wonderful care of us, and we couldn't ask for more. They make this road so much easier than it could be. (We're also thankful we haven't had to see them for awhile! It's a catch 22!)
And sadly, today brings about the 10th anniversary of my grandma not being with us. I can't believe it's been 10 years. I just wish she could have lived long enough to meet Micah.
Saturday, November 19, 2011
OH I'm so excited, I finally got this up. Lizziey B, this was supposed to be a little birthday present from Micah, but couldn't get this uploaded. All the rest of you can enjoy it too. Who doesn't love Green Eggs and Ham. :)
Friday, November 18, 2011
He's still asleep (its 8:3o). Which is exactly what I'd be doing if given the choice. :)
I usually wake him up at 8 if he's still sleeping (he normally gets up at 7:15)... but there's no time for a nap today. He has physical therapy at naptime, and by the time he calms down after that it's usually too late for a nap. So, we'll make the bet and let him sleep now.
Thursday, November 17, 2011
Sunday, November 13, 2011
I'd love for some of you to comment and tell me who you are! People check in from places I've never heard of, sometimes in different countries.
The easiest way to comment is "Anonymous" or with your website, which I'd love to follow. :) Just make sure if you choose anonymous that you put in your comment who you are!
Friday, November 11, 2011
1) For getting to see a million people at WCC on Sunday. I only get over there about once a year, so it's nice to see everyone including some from my moms group last year. And...
2) So thankful for my parents staying an extra hour and for my mom taking micah to the nursery. This was the first time he's really gone to the nursery to play with other kids. While the germ-a-phobe in my just about threw up thinking about it, I was SO glad he was able to have that normal experience (and that I got to sit through church for the first time in a LONG time!) I love my home church, it was just nice to have a change of pace!
3) Micah got his cute little feeding pump that goes in a cute little backpack (although the backpack already broke! Boo!) It's nice to let him have more freedom to roam and not be herding him to get fed every 15 minutes!
4) For podcasts online. I've been listening to various podcasts this week from various churches and Bethel. It's been a blessing since I can't always get to church.
5) For a fun group of youth, and the fact that Travis is cool again (in the eyes of Cora, but not Erica). They are great kids, I hope their parents realize this! We've got some fun things coming down the tunnel. New things! :) Can't wait to roll it out! (By the way, this isn't my job, it's my husbands... hehe!)
Alright, that should be enough for the week. It's been a good week. Micah's got some bug (remember that germ-a-phobe thing.. yep... this is why). So far it's been relatively easy... suction city but no sign of respiratory issues other than that! Hooray!
Wednesday, November 9, 2011
In english... IT'S GOOD!
It means, barring any significant trouble, we can avoid the city of Cincinnati til December 15th or 16th. That'll be 2 WHOLE MONTHS! :)
The abnormal has become so normal, the old normal seems abnormal. Got that? Eh, me either it's past my bedtime.
I'm trying to upload another silly video, it's just not working. Sorry. Internet doesn't seem to be quick enough. I'll try to edit tomorrow and try again.
On a bummer note, the little man is sick, it appears. That's what happens for being let out of the house for the last ten days. As long as it doesn't turn into anything major, it's no big deal.
Tuesday, November 8, 2011
Sunday, November 6, 2011
Things have been delightfully uneventful here! :) Can't complain about that!
We had a little dance party tonight to the "Walt Disney" station on Pandora. Nothing like the jungle book song "bare necessities" to get your toe tapping. It's a fun station, I'd recommend it!
Micah has bloodwork on Tuesday, mostly to check his IGG and make sure it's not crazy low again. We figure it'll drop, but hopefully not as quickly as it has. It's been 3 1/2 weeks since he's gotten it, the last two times he's been over 100 points low by this point. We figure one more trip to Cincinnati before his surgery (Dec. 16). I can't tell you how happy that'd make me!
Thursday, November 3, 2011
1) So thankful we haven't had to be in Cincinnati for the last 3 weeks (today!) It's been months since this has happened! We love our team, but they'd rather us stay home too!
2) For Target's dollar bins, which make me happy! 48 Christmas cards for $3. Yes, please! :)
3) For a really "normal" Monday. Travis is off on Monday typically and we went Christmas shopping and out to lunch with Micah. Poor Micah hasn't been out much at all in the last year, really! It felt so normal, it was almost abnormal!
Monday, October 31, 2011
Sunday, October 30, 2011
I'll get more pics up later, blogger is being a pain!
Thursday, October 27, 2011
For the last month or so, Micah can rarely hold down his morning feeding. Just this morning, I gave him 15 mL (1/2 ounce) of blended food/pediasure, and up it came within 5 minutes. Sometimes we can't get past his AM meds without puking.
This is his current feeding schedule.
9pm-5:30 am- 13 oz pediasure, 2 H20, multivitamin
8:00- Morning meds if he has them with 1 oz water
8:30 am- (Attempt) 4 oz pediasure, 1/2 oz water ("bolus" at fastest 15 ml every 15 min)
11:30am- 6 oz pediasure, 1 H20 (bolus 30-45 mL every 15 min)
3:00pm- 4 oz pediasure, 1 H20 (bolus 45 every 15)
6:00pm- 6 oz pediasure, 1 H20 (bolus 45 every 15)
He gets minimal food/drink by mouth, at max an ounce of each a day.
We've tried pediasure, blended food (although that usually gets mixed with 1/3 pediasure to thin out). Sometimes he even pukes with water in the morning. Occasionally he has trouble with other feedings, but about 75% of the time it's the first one. He has a BM a day, usually late morning.
I'm baffled as to why he barely tolerate anything in the morning. As you can see by our feeding schedule, we're packed the the max with feedings just to get them in. I've debated going continuous in the AM, but he doesn't have a pump he can carry and he's WAY too active to sit still for over an hour.
I'm thinking it's not a motility issue since it doesn't take anything to make him puke. I'm wondering if it has to do with his nissen... Maybe something is pooling up on top of it overnight. Sometimes the puking is caused by coughing, sometimes by suctioning, sometimes by nothing at all. Or maybe it's allergies, and he has too much going on 'junk' wise in the morning.
The puking has come and gone his whole life, but not with reason. He just came off 7 weeks straight of Keflex because of the drain. I'm sure that's left his system beat. We're doing probiotics to try to negate some of those problems.
Wednesday, October 26, 2011
Not sure what the plan is between then and now, (7 weeks, 2 days). I assume we'll be down there for IVIG at least once between now and then. In theory we shouldn't be having the catastrophic drops because he's not draining. It would be super to only have to make one trip in the next two months... I can't even imagine! That being said, I'm not getting my hopes up.
Tuesday, October 25, 2011
I gotta get a post up soon about Micah's feeding schedule, because I need some of you special needs mama's to HELP!
Monday, October 24, 2011
Friday, October 21, 2011
The drain is out now, so we dont have that antibiotic irritating his stomach, and let me tell you, 7 weeks of a pretty potent antibiotic... UGH!!! Not to mention the one he's been on for most of the last 6 months... I hear parents so tentative to give abx for an ear infection or something... and I can't help but think that I wish we had that luxury to worry about that.
He's off the immune suppressant, the drain is out, and his iGG is fine (for now). What? My kid has an immune system (well, maybe not quite, but soon?!) Oh wait, it's October. Doesn't matter because he doesn't get a free pass out as long as he has a trach, in my humble opinion. The (sort of) good news is that he gets synagis again this year, it's sort of like a vaccine against RSV. UNFORTUNATELY, it's monthly shots for probably the next 6 months. This mama just about had a breakdown when I heard that he qualified again. It's a torturous shot (he was upset for about 5 seconds about a flu shot, this he'll scream for), and he knows by now what's coming. And we just got past weekly bloodwork/sticks. *bangs head against the wall* Poor kid... poor mama and papa. I'm just sick of it. Sick of bringing my kid in for torturing, knowing all the while we don't have a choice. RSV can be devastating for a trach kid. Most kids you only worry about for the first year, but it's constant with a trach kid. RSV is just a specific type of cold, nothing an adult would ever have a clue about having.
He's got his yearly evaluation for First Steps this morning. It's kind of silly because he qualifies for OT, PT and Speech just because of his medical conditions, so why bother? We don't ask for the 4th type of therapy anyway! They'll probably try to convince me he doesn't need PT... Good luck with that one!
Which leaves us with our two "big" problems, his puking and his swelling. I'm hoping somehow the puking is related to all the morning meds he was on (two abx and advil). Unfortunately I know I'm wrong, LOL. In the morning the kid just can't tolerate food. We used to be able to get about 5 oz in an hour. Now we're at 4 ounces in about an hour and a half, and he's still trying to throw up (and being successful if we don't get it all back out of his stomach in time). It's baffling. We've had to increase his feedings from 3 to 4 already to accomodate the increase in volume he needs to grow.
Okay, I'm being incredibly boring to about 90 percent of you who don't live in this world. Long story short, he's got swelling in his face that leaves his eye swollen shut for the first half the day, but it goes down which says it may not be LM, just tissue swelling... but why?
That's enough of a novel, I'd say.
Wednesday, October 19, 2011
Tuesday, October 18, 2011
Until... this morning I get a text from the nurse (it was my errand morning) that there's milk coming out of his trach.
A basic anatomy lesson... food goes down (and up) your esophagus, not your trachea. He aspirated everything as a baby, but has been cleared for everything for a long time. No signs of aspiration since he was an infant. Milk coming out of his trach... Dang. Of course I wasn't here to see it, but I have to trust she was right.
The conservative approach would say "do a swallow study, don't give him anything by mouth until we know what's going on" . The opposite would be to say (not that one is better than the other) "given his history of not aspirating in a long time, we'll call it a fluke and go back to what you were doing."
So, I think we're going to try to keep the puking to the minimum by slowing down feedings and watch any by mouth feedings carefully. He's not been doing well with them anyway since surgery. He's holding food in his mouth, which can be a sign of other problems.
Hopefully this random aspiration is a fluke. I'm concerned it was enough to actually cough out of his trach.... Not just a little suctioned out of his trach.
(Didn't I just say I thought things were going to slow down? I REALLY need to stop saying things like that!)
Monday, October 17, 2011
I'm starting to wonder if Travis has a second career coming! Mind you, this drain is supposed to be stitched in. Luckily, as we played with a little, we found out it wasn't stitched in anymore, and out it pulled! It came out really easy. He's only gone something like 3 days without a drain in the last 7 weeks! Once the site closes, the kid can finally take a decent bath and get a haircut!!! (And boy, let me tell you he needs both!)
He's still pretty swollen around his eye. Hoping a good long course of advil will take it down (it doesn't seem to be cystic swelling, really).
Looks like we may not have to be down in Cincy in the next week! It's been 4 days and we haven't even had the conversation about returning, whoa!!!
Saturday, October 15, 2011
No luck getting Micah's swelling under control. We're trying a regimen of advil to bring down the "inflammation" type swelling. We've tried to drain it around the drain, but still no luck even after the doc working on it Thursday. Sad day. As the day progresses he can see out of his eye somewhat, but not usually until the afternoon. Doc wants to watch and wait for awhile, since we've been intervening so much in the last few weeks. I understand, but it's hard. Maybe, though, that buys us two or three weeks from traveling though, which would be a nice change of pace.
I can't remember if I put this last time, but I've requested some time off until the next round of surgery/procedures. Maybe at least a month when this gets sorted out. It's cold and flu season now, which isn't a great time to be out. Don't want to wait too long though, since the weather will turn south in December, probably.
Oh... What to do... what to do...
Friday, October 14, 2011
The poor kid hasn't been able to see conistently out of his eye for the last week.
Things are just really stressful around here. We don't know what to do to get this all under control. The poor kid... He's been on antibiotics for 6 weeks now. That can't be good for his belly (or for anything). We're doing probiotics, because I have to feel like I'm doing something good for him.
He didnt seem to tolerate the rapamycin again... Even after being off it for about 28 hours, it was still in his system higher than it should have been. I think the consensus is we're at the end of that road.
We've seriously thought about just taking a week and living in Cincinnati and doing whatever it takes to get this figured out... Problem is I don't think that'd even help, because there's nothing new left to do.
This disease is far uglier than I ever imagined. And if you know Micah you'll find it no surprise he's over in the next room playing. His face is swollen like a balloon, he can't see out of one eye, he's puking just about daily, but he's playing. I wish I had his spirit.
Thursday, October 13, 2011
Still waiting on seeing Dr. Elluru. That ain't gonna be pretty. At least the tylenol is in his system (and the benadryl won't hurt either) :)
Tuesday, October 11, 2011
Still having leg issues. Might be slightly improved today, hard to say. Ped will yay or nay the x-ray in the AM.
Monday, October 10, 2011
We had a laundry list of bloodwork to get done, I think 7 different tests in all! That might be a record. We should have the first round back this afternoon, and the rest back later this week. We've been in contact with various docs all weekend/today... The bloodwork will hopefully rule out infection, although it seems highly unlikely at this point. Unless is IGG comes back in the toilet we may not have to go down to Cincinnati this week! We are seeing a new ENT in FW to see if he can fix the drain situation. Also, learned we can do IVIG in FW if need be, although we seem to always need to be in Cincinnati for something. (Plus, I'm not sure if they'll do it at the same fast rate we've become accustomed to, since they don't have proof he tolerates it just fine). I'll take the 8 hours of driving and 3 hour infusion over the 8 hour infusion, LOL!
Is it me, or do things just seem really complicated right now? It's my life and I can't even keep it all straight!
Saturday, October 8, 2011
Micah's got some strange symptoms going on. His right leg seems to be causing him pain and is weak. He's limping/dragging his right foot just a little. The reasons could be endless. Luckily, the hematologist called me today (on a sunny Saturday afternoon) because it could have been an infection, which at this point is a trip to the ER. Looking less like an infection, and more like just about anything else. Hoping to figure it out soon. Could be entirely innocent, but it's been going on for 24 hours now, so who knows.
Friday, October 7, 2011
Isn't this a super fun idea? You can read much much more at
and if you're not on Facebook
They have bears for different conditions, including pediatric stroke, congenital heart defects, chiari malformation, cavernous venous malformations, and esophageal atresia/tracheo-esophageal fistula. Those bears are off on their adventures, and it looks like more are in the works.
It will be a little while til Luke and Leia begin their adventures, but you can request a visit on their website.
Thursday, October 6, 2011
Birth- EXIT to airway, intubated 3.5 tube
Micro laryngoscopy/bronchoscopy (ML&B), Neck dissection (bilateral)
ML&B, G-tube w/ Nissen fundoplication
Ultrasound of head/neck mass, ML&B with lasering of lymphatic malformation in airway, ABR hearing screen, bilateral PE tubes
Sclerotherapy, ML&B with lasering
Neck dissection (behind ear)
Neck dissection (bilateral), right parotidectomy
Coblation tonsillectomy/base of tongue lasering
ML&B, sclerotherapy right temple
Mass excision right side, removal of right masseter muscle
Abscess drained (Lutheran)
Sunday, October 2, 2011
We go back down tomorrow. Someone asked how many times we've been down there... I think it'd be interesting how many days we've spent down there in the last 800 or so days... Including the time we were there before he was born, we're at roughly 120. That doesnt even count the clinic visits/follow ups/day hospitals. Maybe someday I can figure out a general number. It's kind of depressing, so maybe I shouldn't.
Thursday, September 29, 2011
We went to Cincinnati Friday, they cut open two slits on his face, drained the fluid (estimated about 6-7 ounces), and put in a drain above his ear. Now, I'm not a fan of drains in general, but this is the worst kind. It looks like they put a straw in his skin, and stitched it in place. It doesn't empty into anything (so all over his hair)... It's so open it could catch flies. (It's covered, don't worry). Talk about infection risk, yuck. (As long as it's covered it should be fine, but still).
The good news is Micah was somewhat of an immune system at the moment. His white blood cells are decent (they're never good), and his IGG should be up still. We've made two trips out, one for pizza with some of our youth and one to do some visiting in Warsaw. Both good times, and he's not even sick yet! He's off the rapamycin due to the strange things it was doing to his body, although I'm sure we'll start it again soon. Boo! So, one infection risk of 4... That's the best we've done since oh... March?
We go back to Cincinnati Monday. I'm pretty tired of these visits, won't even lie. Should be quick and easy, although it's not til 5:30, so it'll be a late drive back.
Micah's doing well though, so no complaints.
Thursday, September 22, 2011
Wednesday, September 21, 2011
*update* They're letting us stay put til at least Monday, hooray!*
They pulled the drain and of course, it ballooned up literally overnight. We have to try to open up the drain site ourselves tonight. We did it with the last surgery, but it really stinks. Won't even lie. The drain site has been closed for about 48 hours, so hopefully we can get it open. If we can't, we probably have to go back to Cincinnati Friday to put a drain back in. If we can get it open, we have to go back next week it looks like (to put the drain back in).
As some of our youth kids would say... "epic fail". That's about right.
Had to get repeat bloodwork today. I believed they called the vein in his elbow "old faithful" because it's been poked so much recently.
I repeat... UGGHHH. We did get out of one day of therapy, saving a trip to FW. That's good.
Monday, September 19, 2011
Since he's had IVIG a few times before they were able to run it at twice the speed of normal, 2 hours instead of 4. That meant we were on the road by 12:30... A very unexpected surprise!
They decided to pull the drain since it's showing no sign of slowing down. They're hoping a compression sleeve (basically) will help slow it down. At this point, it's something to try. If it doesn't work, what we were doing wasn't working either. If nothing else, he should be losing less fluid this way since at worst it'll fill up and stay put.
The rapamycin hasn't done much (although it's only been two weeks). A bit of a scare today... his level of the rapa in his blood was about twice what it should be? Why? No one seems to have ANY idea. Scary stuff. We're taking him off it til Wednesday when we have to repeat bloodwork *whimper* and make sure it's out of his system. It's the same dose it was after his last surgery... Puzzling. His body isn't processing it like he should all of a sudden.
We are headed back in two weeks, barring any major changes (haha).
This week is crazy busy... We could use prayer for that alone. Travis has class T, W, Th... works Friday and half day Saturday. Won't even start listing Micah and I's agenda.
And this was the quick recap, right? Here's a pic of the sweetie passed out on benadryl.
Saturday, September 17, 2011
Micah decided that instead of waiting til his planned C-section a few days later that he'd make his appearance at 8pm on August 31st. They did what was called an exit-to-airway procedure (I was under general anesthesia) to do their best to ensure they could intubate him before he was cut off from my oxygen supply. From what they say, he handled it like champ!
5 pounds, 13 oz and 19" long.
What we hadn't talked about much was the impending surgery, and the fact that I wasn't going to get to hold him until after surgery (ended up being 6 days, yikes!) He had surgery on September 3rd. This was Micah after surgery number 1, the first day he could be held.
After another week or so they decided he didn't need his breathing tube anymore, and he was extubated. About a week later he started showing signs of respiratory distress and after a particular test they found he was aspirating on his saliva very severely. Luckily, he'd been tube fed or had IV nutrition until this point.
There wasn't a lot of discussion to be had, he had to be reintubated and eventually trached. He also needed a permanent feeding tube. He had his feeding tube at 5 weeks, and after finding mass in his trachea, he was trached at 6 weeks. After his trach surgery we were so happy to see his little face! We were on the grow and get trach trained plan for a few weeks after that. Not to mention the "insurance won't pay to let us have what we need to go home so they'd rather pay for weeks of the NICU" plan. Irritating beyond belief!
By now, Micah had a firm diagnosis of lymphatic maformation. In very easy terms, his lymphatic system did not form correctly. It happens in about 1 in 6000 live births, but often not this seriously. It is not a genetically inherited condition, completely random. His type primarily consists of macrocysts, very tiny little bubbles filled with lymphatic fluid. This type of LM basically is a disease that is managed, not cured. It recurrs, although hopefully with less severity after each surgery. We believe that his mass at birth inhibited the growth of some of the branches of his right facial nerve.
He got to fly back to Indiana on a medical airplane ride, where he spent three more weeks in the hospital before getting to come home. Spent a whopping 3 months in Cincinnati, he spent 8 weeks in the NICU there and 3 weeks in Indiana.
Welcome home Micah :) It was mid-November when we finally took him home. It was a beautiful crisp fall day.
At about 6 months old he was declared safe to start trying baby foods. By this point though, he wasn't interested despite the hard work of the therapists. At about 11 months he was cleared for liquids but agian, same problem. He has multiple difficulties in his mouth/tongue/jaw area that make it difficult to do oral feedings.
We didn't have to go to the hospital much for the next year. He had a few procedures to remove the mass from his airway and a few other odds and ends (scopes, P.E. tubes, etc). Considering his prematurity and time lost in the hospital, Micah was hitting most of his developmental milestones very nicely. (Of course, not speech or feeding, but we'll focus on the good.
He had a really big birthday party and we went on vacation that fall. By now, as you can see, the mass had be returning pretty rapidly and decided that a spring surgery would be in order. As you've probably noticed about Micah, he's a happy, pretty well adjusted little kid. He has about as much personality as you could handle, and he brings people a lot of joy.
The March 2011 surgery was a doozy. They werent able to accomplish as much as they'd hoped because of major blood loss. It helped though, especially with his ear and probably his hearing. Unfortunately the surgery results didn't hold up as well as we'd hoped. He still made a really handsome little man dressed up for Easter (here's the before/after)
His surgery recovery wasn't very easy. He spent 3 days in the PICU (the Peds ICU) and about 7 more days in the hospital after that. He lost a lot of fluids from his drain, and it lasted a total of 10 weeks. He needed replacement IGG (immunoglobulin G) and eventually a crazy medicine to stop the drainage. For whatever reason, a medicine they use to prevent transplant rejections often works to stop lymphatic drainage (don't ask, I don't know!) Problem is, it's an immune suppressant. He was on the medicine a total of about 4 months before the next surgery, just this August. The August surgery was much longer, but overall less dramatic than the March surgery. (THANK GOODNESS!) He spent 8 days in the hospital, and is still draining (about 3 1/2 weeks later). The results from this surgery are much more obvious. I don't have a super recent picture on my computer, I apologize.
Here's a brief update on the last year. Micah will be turning 3 very soon! This year was a little less busy than the previous two, but still had some big surgery. They removed a large muscle in his face that had never formed correctly and was holding his mouth too shut. While this surgery helped, it ultimately didn't solve our primary problem. Progress has been slow, and now we need to wait for him to grow so that he can have enough room in his mouth for them to fix his airway issues.
Micah has been doing great. He's ornery and fun and has a ton of energy. He babbles to his hearts content (when he wants to, he's also very stubborn!). He will start preschool this year in hopes it will help him catch up on some of the social aspect he's missed.
|Physical Therapy- Febrauary 2012|
|Micah at the zoo, August 2012|
It has been quite the ride, I won't lie. I wouldn't change it for a thing. I remember reading all the scary words that come up with the term cystic hygroma.. the fetal hydrops, the poor outcomes. It's not easy, but this kid was put on this earth by God for a reason. Never one day have I doubted that. He's our Miraculous Micah. :)
Friday, September 16, 2011
I really hate staying overnight places though. I'm so freaked out about bedbugs. We've got our "favorite" hotels both inside and outside of the city that haven't given us bedbugs yet... Speaking of which, I should probably book one of those.
Oh, the joys of medical parenting.
I am working on a fun post, though. I promise. And if you don't have anything to do on Oct 1st, come join us at the Camp Mack Festival. They have pontoon rides, hay rides, kids activities and delicious food (and I'm sure so much more!) If you want more info, let me know. (or go to www.campmack.org)
Thursday, September 15, 2011
I feel like I'm upside down this week with busy-ness. Next week is Travis' 3 day class at Bethel (T, W, Th) and was going to work at Mack M, F. Apparently Monday will be hospital day instead.
Tuesday, September 13, 2011
Well, the drain continues to make our life more dramatic. The stitch holding it in place has come out, so technically there's nothing holding it in. We've used tegaderm (think very thin very sticky tape) to tape the length of the tubing to his shoulder so it won't get pulled. It could go either way... they could just say, alright, well as long as it doesn't come out, you're good. Or they could say, come down ASAP and get it fixed (I know, couldn't be more different!) The being 4 hours away doesn't help of course.
Sent some emails tonight (everyone gets emails on their phones, so hopefully they'll get them). If they don't get back with me tonight, darn. We'll see what happens... They're not happy with this drain, but he needs one, so it's hard to say what they'll do!