Friday, August 14, 2009

jonah update (and some other stuff)

Hi friends.

I took Jonah to the doctor today, and she says he's still moving air well and didn't seem concerned that the gagging/coughing were from airway issues.

His ears look good, which was the main reason she wanted us to bring him in... thinking that possibly he had an ear infection. (Severe reflux can increase his chances apparently.)

He is teething, which I already suspected/knew. She said that his only eating when sleeping routine is a pretty extreme reaction to just teething, but being how finicky he is in the first place, I'm not really surprised that teething would send him over the edge. Not much of a change today as far as frequency of feedings (still only when he was tired/on the verge of sleep), but he did take 23 ounces (just took 7 1/2 before bed). And no huge spit-ups, although he did soak the back of my shirt/arm pretty good at one point (thankfully, it was just before bath time).

So anyway, still very frustrating because he's only going to eat as much as he sleeps (which is still very variable with him), but at least he took in a pretty good amount (for him anyway). I'm wondering if he's also got some blistering in his throat, because his reflux is causing him more pain than it typically does.

He had the biggest blister I've ever seen today. When he was so bad in the hospital, it was mostly raw skin (which was TERRIBLE), but I've never really seen the size blister I saw today. It took up the whole back of his right calf, and was hanging at least an inch and a half off of his leg with fluid. I had to get a chux pad (those blue water-proof pads) just to drain it on. I would have had to use about 50 of those little 2 X 2 gauze. Anyway, it was really bad... so bad that his bandages on that leg were soaked by this evening, and we had to redress the leg before bed tonight. Anyway, I'm sure it's hurting him a lot less now, but if that skin sloughs off (which it most likely will, because it was so bad I had to make slits in it with suture scissors rather than using a needle), he's going to be in some real pain... especially when water hits it. I feel bad for him. His testicles are so raw from blistering that he cries when he pees. (I'm not trying to be oh-woe-is-me - although this last paragraph makes it sound like it - I just know you guys like specifics to pray for... so right calf please.)

I'm still angry with my computer, as I have some video of Jonah I want to post. I've reloaded the software to the computer after having it reformatted, and now when I load the videos, they are showing upside down in both Media Player and Media Direct. Any ideas? When I'm looking at the thumbnails of the videos, they are right side up, but when I double click on them and play them, they are upside down. (They are also showing up green in Media Player, but normal-color-just-upside-down in Media Direct.)

I don't have a clue. I'm completely technically challenged. I want my brother. Or my sister. Or my other sister. Or my sister-in-law. Any of those would do really.

Oh yeah, I think I've picked the boys' verses... still just trying to make sure they are my final decisions. Thank you, thank you for all your suggestions. I don't think I'm the only one who has been blessed by reading them.


Well, that's it for tonight. Sorry for no video ... again. I'm open to suggestions on how to fix it. I'm very sleepy, and it's Matt's night tonight, so I'm pretty pumped about a (sort of) uninterrupted night of sleep. I think it will do a body emotionally-spent spirit good. It's been a long week, but I'm looking forward to the weekend.

Oh yeah (I know. I know. I'm not very good at wrapping things up). Matt's grandaddy had knee surgery on Wednesday, and is not doing so well. He is extremely physically weak (which you might expect), but he is also completely confused. Yesterday he kept thinking he was in Birmingham (where he lived many years ago), and today he kept thinking it was 1992. Every time he wakes up, he doesn't remember where he is or what he's doing there. He's having trouble answering the most simple of questions. Instead of getting to go home tomorrow (as originally planned), he will be moved to a nursing home (we're not sure for how long) on Monday. Anyway, if you could pray for Grandaddy, we would appreciate it so much. If you recall, he is Deac's best friend in the world, and we're all pretty fond of him ourselves. He is a wonderful man.

Thanks! (again)

33 comments:

The Allen Family said...

I am deeply praying for your family!

I was clicking around google & saw that Oprah had a special segment on EB & there was a charity event to raise $$ for research. They are also selling jewelry & all the proceeds go to research. I thought you & your readers would be interested in it. The jewelry is beautiful & affordable. Here is the link..

http://www.satyajewelry.com/catalog/charity-butterfly-c-115_159.html?page=1&products_id=389

We are always praying for your family. We love us some Jonah- he is too cute!!:)

Lorraine-bo said...

I'm sad to read of the difficult time you're having. I wish I had some amazing words to make you smile.

Even when you don't *feel* like God is there, the Truth is that He is Faithful to His Word which Promises that He does NOT abandon the works of His Hands.

Sending hugs, love, & prayers!

Katie said...

I know you get bombarded with suggestions, so I really try not to post them too often. As you've heard over and over again, every EB kid responds differently. But something that might be worth a try (if you haven't already tried it) is desitin. What we do is on those big blister areas that we don't want the skin to slough off, after the blister is popped we mix a bit of aquaphor with desitin (not the creamy kind but the original kind that has 40% zinc) and put that on the popped blister. Something in the zinc helps dry out the blister and helps it heal faster. Just something to try. It does leave a white film on the skin, but I usually just leave it alone and it's gone by the next day. We'll definitely pray that the eating gets better and that these teeth don't cause any more problems.

Katie

Laura A said...

Hi Patrice-

I'm glad he didn't have any ear issues, and that he's trying to eat a little more, anyway. SO sorry about the blistering in such awful places. I deeply wish I could just say the words that would make it all go away, but do know that I'm praying.

Will also pray for Matt's grandaddy. Anesthesia can do funny things to the elderly - can really wack out their minds! It happened to my grandfather when he had hernia surgery. Sometimes it comes back, sometimes it only comes back partially. The mind is truly an amazing thing!

Thanks again for all your wonderful, HONEST postings. It does help us all know how to pray for you and Matt and sweet Jonah. Hope you all have a restful, peaceful weekend.

Love from TX!
Laura

Lorraine-bo said...

ps ... I know it's not easy to lean into and choose to remember what your head knows about the Lord when your heart isn't feeling it ... I just meant that I wanted to encourage you to continue to hold onto God ... and continue to let us know how to pray and love on your sweet family.

The Allen Family said...

Oh & here is the link to the clip of Oprah's segment on EB incase you didn't see it..

http://www.ebkids.org/spotlight/media.php

They raised over $2 million for research- AMAZING!

Kelsey said...

I am in tears thinking of your sweet little Jonah in pain...it breaks my heart. After reading your post from yesterday I was hoping that today would be better for you. I know that Jonah needs to drink alot more calories than normal, but if it makes you feel any better my kids never drank more than 5 ounces at a time, they just weren't big eaters. Take care and I am wishing you a wonderful night of sleep!

Angela said...

Poor, poor Jonah. My doc always said that when refluxers get sick or are teething that their reflux tends to act up. When my son was first diagnosed his reflux was so bad that he completely refused to nurse and started refusing even bottles. So we did what we had to do which was feed him when he was sleepy.

I will continue to pray for you (and Jonah of course) as you get through this rough patch. And I am certain you will get through it =)

queenmari said...

keeping jonah, and you and matt too, in our prayers. that big blister sounds painful and i'm praying that it heals quickly and he can be comfortable.

you are such a great mom patrice. you handle all this so well and with the love and care jonah needs to make him comfortable. i am in awe of all you do.

--mari

Brittany said...

Poor sweet Jonah. He is in my prayers! You too, Patrice!

Anonymous said...

Praying hard for Jonah's blisters to heal tonight - especially his calf! I hope you get a GREAT night of sleep, God knows you deserve it!
:) ashley

dg darling said...

Praying...for it all!

firstfruitsfarmne said...

My heart hurts so much for you, Patrice.

My son had a bad rash a couple of weeks ago and would cry every time he had to go and I know how much that hurt me. I can't imagine the emotional roller coaster you must endure. Oh, if only you could just have a tiny glimpse of God's plan in all of this, I'm sure your heart would be at peace. I guess that's where faith and trust in Him has to come in, huh? I'll be praying for that for you-- that the peace that passes all understanding will wash over you and Matt and sweet, sweet Jonah.

He is molding and refining you, you know--- and often that is painful, but He won't forsake you. He loves you so very much.

Praying,
Kim

Marie said...

You're not being woe-is-me telling us that Jonah has some seriously painful injuries. Woe-is-me would be complaining that your flat screen plasma isn't as big as your neighbours and it's not fair. Heal quickly Jonah!!!

Following HIM said...

You are so not sounding like woe on me! Jonah is in my thoughts & prayers daily!
~Elyse

Jennifer said...

Hello Patrice! I will be praying for little Jonah's calf and his testicles. I know that sounds funny... but last summer my (then 4 month old) had salmonella and his rashing was so terrible in his private area that he had huge open sores and he was pooping like 24 times a day. We would lay him on the floor with a few receiving blankets, completely naked and that way when he peed it would usually spray up and over his head and the poo would go straight to the blanket. It caused a lot of laundry and I don't know if you could try this with Jonah because of his sores and dressing changes... but I thought I would share.

Enjoy your sleep!!!

Christina said...

I wish I could reach through this computer screen and hug you and Jonah. I hope this will do ((Patrice)) ((Jonah)). I pray that his blisters heal quickly. My heart is just broken over the blisters on his testicles....I pray those heal very quickly!!

Beth Norman said...

Hi Patrice. I read your blog all the time, but have never posted before. I just wanted to give you something to think about as far as Matt's grandad is concerned. I am in the healthcare field and I know that generally after knee surgery they have him on some pretty strong pain medications, which may be a simple explanantion for his confusion. Morphine especially can cause some serious confusion in the elderly. Also, anytime elderly people have an infection of any kind it can cause some delirium and confusion as well, so have them watch him closely for pneumonia or a knee infection. Both are pretty common after an operation like that. Hopefully, this will resolve soon as you and Matt have enough on your plate with that precious baby of yours. :)

godfrey said...

We are praying for Jonah's little leg. I have a little girl the same age as Jonah so it is easy for me to imagine all the cute things that you are describing Jonah doing. This is such a fun age. I am a speech-language pathologist in a nursing home and we get people like Matt's grandfather ALL the time. Usually the altered mental status will go away and sometimes it takes as much as a couple of weeks. (google: Post operative confusion) also suggest that he see an SLP during his rehab in the nursing home. She will be able to assist him with things such as orientation, problem solving, and safety awareness. We will be praying for you guys!

Staci said...

Wish I could help you with your computer issues...you could always just tell people to turn their monitors upside down to watch it :) Bless you all! I hope Jonah's right calf heals quickly and painlessly.

Anonymous said...

Your family has been very heavy on my heart and mind. Praying for you around the clock and hoping for a wonderful, uplifting, blister free, food eating, non spitting up weekend for you, Matt, and sweet Jonah! Hugs from Sarasota, Fl!
Terah

Anonymous said...

I continue to pray for your sweet family. Granddaddy is on the list there too! I want you to know you are doing such a great job of parenting (in general and with Jonah). I have been parenting for 11 years (so still pretty new at it!) with three kids. What I have learned for sure is that there is never a perfectly right or wrong decision. Everyone has a plus and minus side. You have to learn what is best for your child and your family (cloth or disposable, breast or bottle, public, private, charter or home school, G rated or PG rated). It never ends. Please remember that they are YOUR decisions and he is YOUR child. If you make a decision prayerfully, then don't worry about other people. I am here to stand by you and support you in prayer. You can't make the people happy. You must follow what God tells you. Hope things are improving on the eating/sleeping/healing front. Each day I enjoy me some Jonah (pictures or video add to the joy but are not required!). Keeping you in prayer and thoughts, Patrice. Jennifer in Southeast, NC

Mimmy said...

Patrice - Sorry I've been away for so long. As I returned, it hurt me to hear that Jonah is not doing as great as he had been and that you are not your super, cheerful self. Having said that, you are entitled. If there is anyone in this world who is entitled to a breakdown in spirit, it is you. Dealing with EB on a daily basis, especially when you have friends with health, happy, babies has to be one of the hardest things to endure. Just remember God doesn't give us more than we could bear. I'm sure that you wish He didn't have so much confidence in you and Matt but try to think of it as Him being very proud of you and giving you a very special baby that no one else in this world was ready to raise.

Jonah is and will be a champion for God as long as you and Matt keep your faith in the forefront. There is no doubt in my mind that you will do so and you have, literally, a world of blogger friends behind you.

Take care, God Bless, and I love you to Heaven and back,
Mimmy aka Aunt Joyce

The Greene's said...

I don't think I've posted before, just a lurking reader from Minnesota :)

Anyhoo, when my grandma had knee surgery years ago the same thing happened to her. She came out of soooo confused and had to spend some time in a nursing home as well. Slowly but surely she "came to" and was able to go back home as normal. Praying for him that his prognosis is the same :)
And praying for you guys and Jonah as well!

-Sarah

Mimmy said...

Patrice, after I caught up on my blog reading today I went to my own blog to post. All I could think of was you, Jonah and Matt and the feelings you have shared over the past two days. Hopefully, you will not mind that I made your family the subject of my post and wrote a poem for Jonah. I have e-mailed a copy to you and hope you enjoy it.

Thank you and God Bless,
Mimmy aka Aunt Joyce

Anonymous said...

Praying for Jonah, as his body grows. Hard on babies getting new teeth, even harder for Jonah.

Grandpa is probably "snowed". Snowed is when older people have too much medication in their bodies, so that their brain cannot function like it should. Praying for grandpa that the medication will leave his system, so he can get back to his old self.

purejoy said...

sorry you're having a rough week. i think some good sleep will do you well! as for granddaddy, i hope that once he's off the pain meds,it will clear up his mind some. my son just had surgery and those meds really mess with the mind!
take care and i hope you have a blessed weekend!

lifelaughsandlove said...

Awww, poor Jonah. Reading about his blisters made me so sad for the pain he has to endure. I can't even begin to imagine what a tough little guy he must be to go through all of that, and what a tough mommy you are for having to handle all of his medical issues. I have a hard time handling splinters, so I am in awe of what you do for him. You all are in my prayers, as well as Grandaddy. It's so hard to see those we love in such a mentally confused state. We are going through similar stuff with my Grandpa.

~Amy

P.S. - Can't wait to hear the verses you chose!

lifelaughsandlove said...

Sorry, me again! I was just thinking about the whole eating thing, and maybe this is way off base, but I'll throw it out there. Is he acting like he is really hungry and just not eating? or is he seeming content with not eating?

I ask because for the past few months I really struggle to get Anthony to eat during the day. Even before naps I can't get him to take a bottle. It's been very frustrating to say the least. However, at night he chugs bottles like he can't get enough. He literally takes more than half of his total ounces in the middle of the night, sometimes waking up 3 times (and he is 10 months old and should probably not be waking up so much!). I think he is probably getting around 20 ounces at night!

Anyway, my theory is just that he is so interested in what is going on around him he doesn't want to be bothered with eating. He just wants to look around the room and take it all in. Even at naptime if I dim the lights and try to give him a bottle he wants to sit up and look around the room.

In the middle of the night he is much more groggy and tired, and it is very dark in his room so I guess there aren't the same distractions.

Anyway, just a thought that maybe Jonah's eyesight has improved and he is noticing more stuff and is too easily distracted. I know his situation is different and he needs as many calories as you can get into him, but maybe it will reassure you that it is not a medical problem and it is more of a developmental thing?

~Amy

the-mommy-person said...

Love to Jonah! Blessings!

Heather from Ontario Canada said...

Patrice. This might be way off the top and don't take it as a medical advice or anything jsut my thought. When you said it hurts Jonah when water hits the open sore I started thinking. When I have an open sore I soak it in salted water. When we sweat we sweat salt. I'm wondering if it would be helpful to put a bit of salt in the water before bathing Jonah. I'm wondering if this would hurt less for him? Just wondering if there was someone professional you could ask?

Anonymous said...

Patrice:

You are inspirational. It is o.k. to be frustrated, worried, and concerned. I have been that jealous parent too (without a good reason). In your case, you don't wish to have your son in any pain and want him healthy. You are not wrong to have those feelings; you are strong to admit them.

As another reader said, try hard to focus in on growth and development vs. ounces. Use your instincts though. That said, keep persevering and hopefully the pendulum will swing back.

Your son Jonah will be a very proud little boy and you will continue to be a proud Mommy. Clearly, you were meant to be a Mother.

Center for the said...

Hey Patrice,
First of all, I'm so sorry to hear Rudy is not doing well..
maybe it's just the anesthesia taking a while to wear off...
I bet that is all it is...

Now- as for everything else..
I start by saying...
I still think you are amazing...and strong...
blah-blah-blah...

on the reflux thing...
have they put him on Nexium yet?
Did you get the Neocate? Could be he still needs to be on something more sensitive than Allimentum...
Not trying to tell you what to do - and I know there are so many other issues to consider...
but the reflux thing can be managed...
I still say - see if you can see Dr. Jim Sandburg w/ Pediatric Gastroenterology. He is AMAZING...
has office hour sin Concord/Kannapolis - which would be closer to you...
anyway - hearing about his blisters in this throat just make me so sad...
Let me know if I can get you Jim's number - or do anything else...
Love,
cathie clarkson