Manic Jonah

Because Jonah slept late yesterday morning and we had to unexpectedly go to the doctor's office yesterday afternoon, I did not get to do his second dose of Pulmicort and Albuterol until 8:15pm last night. Apparently that, on top of his first dose of Prednisone I gave him at 6:15pm, was a little too much.

Jonah, 10:30 at night, after being in bed (VERY awake) for an hour.

Matt was at the Wake game last night, so for two hours I dealt with Jonah calling my name and wanting/need/exclaiming something every POINT two seconds.

After our normal nighttime routine, Jonah cried and fussed for about 20 minutes before I gave in and went up there for the first time. Mistake. This continued, some of it over the monitor, some with me up in his room, live and in person for two hours.

Jonah: Mommy, SING!
Me: (calmly singing) When peace like a river attendeth my way...
Jonah: Mommy, sing Jesuslovesme!
Me: (calmly singing) Jesus loves me this I know...
Jonah: Mommy! I wanna eat goldfish!

Later...
Jonah: Mommy! I wanna take a picture!
Jonah: Mommy! See that pretty light?
Jonah: Mommy! I wanna go downstairs!
Jonah: Mommy! I wanna play train table.
Jonah: Mommy! Who comin' today?
Jonah: Mommy! Wanna read books?!
Jonah: Mommy! I want my big pillow.
Jonah: Mommy! I need fresh water.
Jonah: Mommy! I went to the doctor!
Jonah: Mommy! I wanna get in the bathtub.

And on and on and on until he finally passed out at 11:30.

Moral of the story: No more Albuterol, Pulmicort, Prednisone combos after 6:00pm.

The End.

jonah update, again

I just want to thank you all for the prayers and advice. Some of the things you've mentioned, I've tried, some I haven't but I'm always thankful for the tips. What do first time moms without blogs do when they need help? I have my very own advice/support network. :)

Last night was MUCH better. Jonah had one bad coughing episode and coughed on and off throughout the night but nothing like the five or six horrible episodes he'd been having the previous three or so nights. Honestly, I've lost track and it all just runs together. I just know I felt way more rested today than I have been. :) Instead of trying to tube feed him lesser amounts of his high cal/fat/protein stuff I normally give him, I took Owen's mommy's advice and tried some lighter stuff through the tube. So for breakfast and lunch he had a container of baby food granola mixed with a pack of cinnamon applesauce, duocal for calories, and some rice cereal to thicken it up. That made about five ounces, and he held it ALL down at both breakfast and lunch. For dinner, I strained the chicken chunks out of some Cream of Chicken soup and tube fed him six ounces of that. HE HELD DOWN ALL HIS FOOD ALL DAY. Praise God!

Things were really looking up, but around 11:30 this morning, he started looking worse and was running a 100.4 temp under his arm. The temperature scared me, because with all his coughing, especially at night, pneumonia was my first thought. I took him to the doctor at 3:00 and she quickly determined that he has a double ear infection, but no pneumonia. Praise God!

So now we're to continue his breathing treatments until his cough and congestion are better, on ten days of Amoxicillin, and five days of (evil) Prednisone. He's coughed less today, and it seems the neb treatments are definitely working. Praise God!

So except for dreading five days of Meany Head 'Roid Rage Jonah, things are looking up!

Thank you so much for your prayers! As always.

jonah update

I emailed the doctor last night about the possibility of Jonah having Cough Variant Asthma. She emailed back saying that is what she was treating him for when she sent us home with a nebulizer, albuterol, and pulmicort almost a year ago. I didn't know that's what she was thinking he had... we never called it that. He had a horrible cough at that time but that was when his breathing had gotten so bad. So we came home with the nebulizer for that.

But I still have the nebulizer and I AM AN IDIOT for not starting breathing treatments days ago. I don't know why I didn't think about it except that I AM AN IDIOT. When we did breathing treatments last time, they were more for his horrible breathing, so I just didn't think about it for the cough. Grrr. I'm so incredibly frustrated with myself. I shouldn't have been so stubborn and arrogant and should have called the doctor earlier. Pre-nebulizer though, all they did was suggest Benadryl (which doesn't work for him) and I would just get so aggravated. Being humbled sucks sometimes.

Anyway, I started breathing treatments today (and LOTS of Mucinex). We worked three in and I'll work in a fourth if he wakes up enough tonight to cooperate. So far I can't tell much of a difference, but hopefully tonight will be better. He managed to hold down the four ounces I fed him for breakfast (I usually give him 6 to 8) but threw up all of the 5 oz (I usually give him 7 to 8) I fed him at lunch. I fed him another 5 oz at dinner, and so far so good. I thought he was doing some better this morning, but then he threw up his lunch and coughed ALL the way through nap. It was horrible.

He acts okay except for having moments of exhausted. I don't even think he knows what "hungry" feels like or is. I don't know how he's not starving though. He is worn out though and all he wants to do at nap and bedtime is just lie in his crib. He won't let me hold him upright and rock him to sleep and he won't sleep with me in bed so I can keep him propped up. And I try to prop him in his bed but he just wriggles his way back down to where he's lying flat. Poor thing just wants to be comfortable and sleep. His cough is so violent and he has bad spells of 10 to 20 minutes where he can just hardly catch his breath. And if he has anything on his stomach, he throws up. He hasn't thrown up at in his crib at bedtime yet (he did at nap time on Friday) though, because he's been throwing it up before he even makes it there. So if he can continue to hold down dinner, he may throw it up in bed, which would probably mean middle of the night bath/dressing change. So I'm just praying he can hold it down and the coughing subsides tonight. Nap was not encouraging though.

This is a photo I took with my phone right before lunch today. He was so tired, he had just rubbed his eyes like crazy. And then he couldn't sleep when it was time for all the coughing. It just breaks my heart.

And then he had this huge blister at dressing change time. (The white one is one from yesterday... the white is Desitin.)

So it was just an "EB sucks" sort of day.

Usually I don't get mad at God, but I'm having a hard time with this one. Being able to eat and sleep just seem like things you should be able to do. I don't know why it has to be such a struggle. I'm just so sad for him.

better!

Sweet Jonah has done much better the last two days. He still had diarrhea yesterday, but did not throw up. This morning's poopy was not nearly as runny (sorry, y'all), and no pukes again! Tomorrow we'll be moving up to seven ounces a meal, hopefully! Thank you so much for the prayers. It was just lasting so long and was so sporadic, I was starting to get freaked out. Your comments were so comforting. The normal stuff is just so scary because I don't know if it's normal or EB related. (I mean, he eats his freakin' bandages... seriously???)


I've been feeling a little sorry for myself (and Jonah, of course) over the last couple of weeks. We've just not gotten out much and we can't go to the pool and he can't play outside. He's feeling the effects of being cooped up and has been really whiney the last couple of days. My patience has been low, and I feel like I've been snapping at him more the last couple of days. I think we're both just a little stir crazy so I'm going to try to get us out somewhere tomorrow and Friday, just because we are driving each other crazy. :) He's so good, though. And I really really shouldn't complain. I've really been convicted today about how much we, as Americans especially, complain SO MUCH about EVERYTHING (it's too hot, it's too cold, stop raining, oh we need rain so bad, I hate my job, I want to be a stay-at-home-mom, my kids are driving me nuts, I have to get out of this house, There's nothing to eat (really?), My air condition is broken... and on and on and on). It just made me sad to think about. You know that verse about always being ready to give a reason for the hope that you have (I Peter 3:15)? Well, ain't nobody gonna ask me about my hope if I don't have any. O-U-C-H. My life and my attitude should look different. I should be and feel like an alien in my air conditioned house, my mini-van, and with my full pantry. If we're just going through the motions, living like everyone else, and complaining with the rest of them, we're not being much of a light. And we're surely not living in the joy and hope that comes with a true life in Christ. Well, kick my butt and call me Sally. That. Just. Hurt.


Anyway, I'm thinking A LOT these days. That's not always a good thing.


Hey, wanna see some cute shots of Jonah? Alrighty then.

Whiney or not. Summer or not. Crazy Momma or not. I love this kid. I love my life, no matter what it looks like. I have lots and lots and lots of hope. Now, come on, ask me. Cause I've got a whole bunch of reasons. :)

jonah is still sick :(

I'm feeling sad and confused tonight about Jonah's mysterious illness. He wakes up with diarrhea (like major blow-out diarrhea) every morning but then doesn't have it again all day. When he's healthy, we give him 8 oz of tube feed in the morning, 7.5 oz at lunch, and 7 oz at night. For the last several days, we've been doing 6 oz at breakfast, 5 oz at lunch, and 6 oz at dinner. And he's still throwing up at least one meal each day. I thought he was doing better today because he held down breakfast and lunch, but then he puked his entire dinner. I called the doctor and of course they think it's a virus and said to do Pedialyte. Thanks. But here's the thing, if it's a stomach bug, why haven't Matt or I caught it? We're on day five, and I thought most stomach bugs were highly contagious.


Irrational Fear #1: Jonah chews on his Tubifast (outer sock type bandaging) at night and eats the strings (that's not the fear; that's truth). Could he be developing some kind of blockage?


Irrational Fear #2: He has some sort of bacterial infection that's making him have stomach issues.


Irrational Fear #3: Some food I'm mixing with his tube feeds is bad?


I don't know, but something about it just doesn't seem typical to me. He's not lethargic or puny and doesn't act like he feels bad at all between the puking. He's normal Jonah, but with puking and diarrhea. It's weird.


And how long do I give it before I take him to the doctor? And even when I do, what are they going to do? Is it worth it to expose him to even more germs? Today was Day Five. He's having maybe three wet diapers a day.


In other news, I'm doing a whole lot of youtube surfing for beginner guitar lessons after J is down for the night. I tweeted this photo last night.

Don't worry. I've learned how to spell "chord" since I took this. I'm making great progress. 

I have most of the major (and a couple minor) chords written out, so now it's just time to practice learning them without looking/counting and switching between them. No biggie, right? And I have to say, you think guitarists just get up there and strum. But I am not good at improvisation. I can't "just strum." I need you to show me your right hand too youtube video people! Not all of us can just make it sound right. Some of us need order and rules and exact instructions for everything we do in life. Dang it. (I'm going to be a terrible go-with-the-flow, laid back musician.)

But back to the stuff that really matters. I would love for you guys to pray for Jonah's health and for clarity and discernment on our part. EB makes everything so much scarier, and you don't want to just run him to the doctor for any little thing. He's likely to pick up something just as bad, if not worse, there. It's always a question of how long to wait it out and when to take him in and what tests/procedures you can put him through that will do more good than harm. Prayers are definitely appreciated. 

our day and mono?

We've had a pretty good day. I told my dressing change help not to come, since we are unsure what kind of germs are lurking in our house, but I did dressing change all by myself! For the very first time! (Unless you count yesterday when Matt slept on the basement couch while I did it.) It went really well. I'm not ready to make a habit of it just yet because Jonah is so inconsistent with his freak-outedness levels, but today went really really well. We're on our way (hopefully)!

This afternoon we took some things to be mailed, stopped by my OBGYN to let them meet Jonah (I know, I know... two years, ridiculous), and then stopped by the park before coming home. It was a little too hot, so we didn't get to stay long, but Jonah really enjoyed the few minutes we got to spend. He even let me twirl him on the merry go round.

Matt went back to the doctor this morning. They are suspecting Mono, but we will know in two to three days when his blood test comes back. He's had a very severe sore throat, achiness, chills, probably a fever, and overall fatigue. If it's not Mono, it's some kind of kick-butt virus that I hope nobody catches. It ain't pretty, folks. (And I have about as much compassion as a green pea, so needless to say, we aren't on the best terms right now. I don't know what my issue is, but there's a lot of selfish resentment on my part that he can go sleep for hours and/or not set up or do dressing change, and that is NEVER an option for me. Jonah won't even let me take a nap if he's awake in the house. Lots of banging and crying at the door. It's not Matt's fault, but makes me mad nonetheless. I am not a very nice or sensitive person when it comes to sick husband... just trying to keep it real here on the old blawg.) If it's Mono, I guess I'll have another five weeks to practice and get it right. Sigh. We do still plan to go on vacation, knowing to be careful about coughs/sneezes, niece and nephew kisses, and eating after each other. Hopefully Matt can just hole up in the bedroom and get some rest if he needs to since I'll have so much help with Jonah.

And to lighten the "Patrice sure is a jerk" mood, here is an email Matt sent me today.

In the grocery store, I overheard some guy on the phone frustrated, presumably at a foreign person with whom he was having to discuss an issue. He said, “Could you put somebody on the phone that is more better at talking?”

Ahh... the people. They make me giggle (and also want to cry a little).

Last thing - Don't forget the Discovery Toys Fundraiser going on over on Hope for Anton. Super high quality, educational toys, with 20% of sales going to Anton's adoption fund. Ends on the 15th (Friday)! Click HERE if you're interested.

new day same sickness

Still feeling like a Crap Wad over here. I chose last night to tell Matt our plan in case anything ever happens to one of us during the night. I told him to call our neighbor Barbara to come sit with Jonah until my mom could get here. Why did I choose last night to tell him? 


Because I had taken -
- at least 15 ibuprofen in less than 24 hours
- hydrocodone
- two doses of my antibiotic
- Singulair 


and I think some other stuff. I was just waiting to stop breathing or go into some kind of spontaneous liver failure or something. Not really, but I was nervous.


Today I added Mucinex and Tylenol to the mix. Just trying to survive over here. My throat hurts so badly that I've barely eaten today. And if you know me at all, you know that for me to give up any amount of food means that things are bad. If you have the overwhelming urge to specifically pray for the right side of my throat, feel free to indulge. I know it's not strep. I got a strep test done at CVS yesterday. The quick test was negative and they called me tonight to let me know the longer one came back in negative too. So I'm thankful for that but ready for the current antibiotics to do their (freakin') job already. :)


Enough about me.


Jonah had a decent day. Still coughing. Threw up twice. But took an awesome nap (which means I did too!) and has been happy and mostly easy on me all day. My dad is here for a couple of days, so Jonah's really enjoyed having him around. I couldn't have asked for him to be any better today, considering how crappy I've felt. He's a gem. 


Matt is amazing. He's pretty much taken over most Jonah duties after work the last two days, and given me as much of a break as possible. And tonight, after he put Jonah down for the night, he went all the way across town and got me a Sonic chocolate milkshake. He's a super gem. And my sweet mother in law drove home last night in the dark (she's my Monday/Tuesday help every other week) so she could help Matt and I could rest. She usually leaves at 3 or 4 in the afternoon but stayed until 7, and then drove three hours home.


Moral of the story: I'm a pansy when I'm sick.


Glad Jonah doesn't take after me in the toughness (or lack thereof) department. 

bummage in the williams household

Things are a little rough here today. My sinus headaches from this weekend have turned into a full blown sinus infection. I only feel okay if I'm loaded up on at least 600 mg of ibuprofen. Otherwise, I'm aching, my ears and head hurt, and my throat hurts so bad I can barely talk or swallow. Stinks. Anyway, I started on an antibiotic today and I'm going to take another dose before bed, so hopefully I'll be feeling better fast.


Jonah's still sick, but I took him to the pediatrician today. She's started him on an antibiotic (apparently he's got the beginnings of a sinus infection too), and we came home with a nebulizer and Pulmicort! We have some Albuterol too, but I'm not planning on using that unless it moves down into his chest. So far, it's all upper airway. We may not have success with the Pulmicort, but at least it's something to try. Jonah was not a fan (to say the least) of us blowing that stuff in his face, but  hopefully he'll get used to it.


I'm missing my Radical book/Bible study tonight, and these girls (well, except Vanessa, cause you know, she lives in Texas)...

... which is a real bummer. 


Please don't miss the cut pink/tangerine baby girls' hat over on Hope for Anton. It's size 3-6 months, ADORABLE, and currently has no bids!


Hope you all are having a God-is-slapping-me-in-the-face sort of week.

sick again :(

Photos from our friend David's birthday party from this weekend. Ever since then, Jonah will tell me, "Sing," and I have to sing "Happy Birthday" over and over again. When I pause after the word, "Dear," he sings "Daaa-pid", and then I finish up. It is pretty much THE cutest thing I've ever seen. We love you, Dapid.

The birthday boy!

Big brother Micah.

She went home today. I don't want to talk about it.

My best good friend and her beautiful Mommy.

Three generations. Elizabeth, I could eat you with a spoon.

I'm frustrated tonight. Jonah is sick again. Coughing like crazy, throwing up meals, not sleeping well (b/c of the cough) and has already damaged his airway (again, the coughing). The doctor's suggestion? Benadryl. I will be seeking a second opinion. I currently have him on an expectorant during the day, Delsym at night, some kind of natural honey cough med that Matt picked up at Whole Foods, and I had to give him a steroid dose tonight. After one day of coughing, he is already struggling to breathe and has stridor. This is ridiculous.

And did I mention that the "L" and "J" key tops have popped off on my computer and I can't get them back on?

And that I've gained five pounds in the last two weeks?

And that I spent a ridiculous amount of time today on the phone with the Social Security Office and DirecTV ("I just want to cancel. You aren't going to convince me. Your price goes up every two months. You replaced our DVR box for "free" but charged us $19.99 to ship it. It took three days. We had to pay $15 for a remote that broke by no fault of ours. I don't think it's right I have to pay $6.00 a month if I want to insure your crappy equipment. Please just set the cancel appointment. Now.").

AND VANESSA WENT HOME.

I said I don't want to talk about it.

videos

Here are a couple of videos from the last week. The first was kind of a disappointment. I mean, I think he's cute. Don't get me wrong. But it was during the half time show of the Super Bowl, and he was dancing and rockin' out to The Black Eyed Peas (he was the only one of us that thought it was any good). But of course, by the time I got the camera out, he was winding it down. Just take my word for it. It was cute.





And this one is from today. I mainly wanted to get his breathing on tape (or memory card, as the case may be). He seems to feel fine. He breathes okay when he's awake, although he coughs some. But when he goes to sleep he gets really junky, is having some stridor, rattles a lot, and also ends up throwing up and having a really hard time getting the mucus up. He had a really low grade temp yesterday, but today he's seemed okay. But once we put him down for bed, he fell asleep again, started that scary breathing, woke up coughing, puked, and choked again. I'm starting to get freaked out. Pneumonia? As much as he throws up it makes me scared that he's gotten some of this mucusy stuff in his lungs. I guess I'll call the doctor tomorrow, but I hope to avoid xrays if we can. That is not fun with an EB child. Especially an EB child who throws up when they get upset. Praying he's okay and for wisdom. (It's still an adorable video though, in my opinion. And please notice that he is now sleeping with his purple ball. He carries it around All. Day. Long. and it's the first thing he grabbed as soon as he woke up. I'd say he's attached.)

some better

We're feeling some better today. Matt and I seem to have finished the worst of it last night, although we are extremely weak and sore today. Jonah is still throwing up some with his meals, but it's hard with him to know what he can and can't handle, seeing as how he refuses food all the time, even when he's feeling okay. We are almost 100% tube dependent these days, so we just keep trying to feed him small amounts. Sometimes he keeps it down. Sometimes we do our best (although not often successfully) to catch his full stomach contents in a cup. You're welcome.


What I learned today: Sucks to do dressing change when you feel like crap. I'm so glad we were doing better though because there is no way we could have done it today if we had been in the shape we were in last night. We were pathetic, I tell ya.


Matt's going to help me with dressing change tomorrow since I don't want anyone coming in to the house just yet. Matt's Dad is sick too from being here for 24 hours over the weekend, so we're obviously pretty contagious. Matt's going to attempt a half day at work tomorrow. Hopefully we'll both be feeling much better by then.


Oh, I ordered this thermometer today. It doesn't have to touch his skin at all, which is what we need. The regular one or ear one and probably even the forehead one could cause damage if he fought. And believe me, he always fights. (Thanks for the link, Vicki!)


Thank you all so much for your prayers. I'm hoping we're on our way up. :)

ugh

Stomach Bug - 3. Williams Family - 0.