Saturday, April 11, 2009

update

We took Jonah to the doctor this morning. She said that he's still moving air well, and that his lungs sound good. She thinks it's just some congestion, but wants us to keep an eye on it. If he begins to have a fever of over 100, she has instructed us to go to the ER.

While we were there, he breathed much better, wasn't quite as congested, and ate 60 cc's without a problem. It was like taking your car to the shop and it not making the noise. Hopefully he'll continue to improve. He does seem to be breathing a little bit better. They used saline drops and suctioned him out a little at the doctor's office, and we'll try to do the same thing as needed and before he eats.

He smiled at Matt this morning. I missed it, but Matt says it was definitely in response to him. Maybe I'll get a smile one of these days. I just feel like he feels pretty crappy right now. Poor thing hasn't had a whole lot to smile about.

Jonah's waking up to eat. Hooray! Gotta run...

22 comments:

Stacey said...

Praise the LORD!! I am so glad that things are going good. I will continue to pray for this nasty bug to go away. I hope that suctioning him before eating will help.
I hope you guys have a great Easter Weekend,
<><

Hope said...

I'm praying for Jonah. You two are awesome parents!! God chose you for a reason!!

Townsends said...

I swear that as soon as my daughter gets to the Dr's waiting room she is healed!!! Happens every time!!! I'm going to just start taking her to sit in the waiting room instead of actually going in to see the Dr.!! I'm so glad Jonah is doing so well!! Still praying!!

RLR said...

Same here - the kids are always perkier/feeling better when you take them to the dr. Saline works wonders - glad it's something you can do for Jonah.

Robin & Slater said...

If you will email me (rglowry12@yahoo.com or leave my a message on my blog)the specific things you use/need I will see if I can get some of them for you (my husband is a Medical Doctor and I am the Office MAnager)... I will look and see how much Aguaphor cost us (from our medical supplier) and see if I can get it for you cheaper than $11 ...
I hope ya'll have a GREAT first Easter....

Robin

Raising Olives said...

Our son has Erb's Palsy and it never fails that he will do things for his therapist that he will never do at home. That has been true since he was a newborn. Makes me look insane.

We are continuing to pray for Jonah.

Blessings,
Kimberly

caseyzach said...

Hello patrice..I have a 2 year old with dystrophic EB and I feel compelled to add a coment to your post. Having an EB child myself i follow most other EB children's stories..and we pray for your son daily..My son had airway issues for the first 14 months of his life. Eventually at 14 months we had to emergently have a trach put in to manage the blistering in his epiglottis and upper airway. I just want to make you aware that your ENT is completely wrong about airway issues and EB..I was told many of the same things you have been told but they were wrong..I lived it...and it all started the way your son is starting and at the very young age your son is. I guess each ENT has different views..scopes are invasive..require anesthesia with EB kids...and should only be done if there is reason to suggest there is a problem so that advice may be accurate..The very poor advice he gives them is it will be very obvious...I can tell you from experience, it was NOT very obvious with Casey...It DID come and go..which made it confusing to diagnose..and once it WAS BLATENTLY OBVIOUS as she says..HE WAS IN RESPIRATORY ARREST...and his airway was the size of a straw.. for months he compensated ...even though he stopped stridoring, his airway was swollen and he never showed any sign that he was in trouble ..no color changes..clear lungs...happy and doing all his normal activities...without distress..while all along, his airway was almost swollen shut and we didn't even know it..it was a time bomb..and we got lucky we had a second chance..even when the stridoring stopped, his airway was still a mess with no symptoms.blistering can come on suddenly and block their entire airway, esp when it is that tiny in a moment....I can only say casey has a different type of EB..junctional children may need to take a different approach and I'm not sure what they do with junctional children and intervening for airway issues......I can only say this, don't get false hopes..it is very easy to believe what you WANT to hear...but don't be fooled..once it is absolutely obvious.YOUR CHILD WILL BE IN TROUBLE. watch for the stridoring and watch for the drooling..don't let it fool you..I'm not writing to scare you but to make you aware.. the best weapon you can have is knowledge..arm yourself with all you can get and all the experiences of other parents who are living what doctors think they know about and you may be able to stay ahead of this sneaky disease..email anyime..johnbeth91@aol.com for advice or help with issues you will need to tackle..we're always happy to help...hugs and kisses, beth

Sara said...

Please be very careful with the suction. We did it to our daughter nose when she was a baby not knowing the damage it would cause. It torn the skin off the inside of her nose and it scab completely closed. We were so scared she was going to stop breathing. Luckily we were able to get the scab off with some Aquaphor. And then it got infected and she almost ended up in the hospital because of the infection. Plus the force of the suction could tear the skin or cause blistering in the airway.

We never did find an alternative. Just the saline drops to loosen it up and hope she sneezed it out.

Jane said...

Wishing you a Happy Easter. I am glad you took Jonah this morning, better safe than sorry. And don't worry about taking him in for every concern you might have. Jonah is a special child and being you and Matt don't know what to expect, it is the right thing to do. You are doing a great job, I know it is very tiring, but take one day at the time. God is with you every step of the way. Continuing to pray for all of you. May God Bless

Penny said...

Good to get the reassurance of the Dr. I hope the saline helps so he can get more groceries in and get over the bug quickly.

He will give you "that" smile, and again you will melt. It will be so worth the wait.

I loved the little "there you are" smiles and the cooing when the kids were little.

Praying for no congestion and easy dressing changes..........

jewelrylady said...

Oh, the sweet sound of answered prayers! I'm so glad your doctor's visit went well! We'll continue to pray for your little man & that he starts to feel better soon!

I wanted to tell you...when I worked in the BICU, I took care of a little man with EB and loved, loved, loved him. From taking care of him, Johan is doing so well with the help of great parents and our heavenly father! Hang in there.....your smile is coming along with a big hug soon!

Melissa said...

Awwww...his first real smile....how sweet! I'm sure there'll be lots more to come...he's got two terrific parents, and he knows it...

Michelle in Va said...

So glad you got a good report. God is hearing and answering our prayers. Continuing to pray. God is so good!!!!

Anonymous said...

Patrice, I am glad you had him checked out today but a suction device should not be used with Jonah. The lining of his nose and throat will come right out. I agree with Beth and Sara, in their posts. I appreciate their honest statements as I know they speak up with your son's very life in mind. It is so important that you have someone that understands EB. When you mentioned the increase in drooling, it made me really nervous as it was another symptom associated with EB airway issues. The hoarse voice is a symptom of blistering in his vocal cords - another sign of an airway issue. The strider - it all goes together. Unless they scope Jonah, there is no way to know what is actually happening. Your doctor can not make a diagnosis based on listening, swallowing studies or anything else. Only a scope will show the area. Can the scope do damage? Yes, but much of the damage can be prevented if an experienced EB doctor is doing it. A child wtih EB can experience a respitory emergency with little or no warning. Your son is actually showing warning symptoms that should be evaluated by an EB specialist. Our son showed the same symptoms at home but looked and sounded fine at his doctor's visit. After telling the ENT his symptoms she immedicatley grew concerned and scoped him in the office - we found his airway was the size of a coffee stir stick. Without intervention, she gave him one month or less to live. I know this is a lot to learn and I belive you are fully capable but I also know that you son shows symptoms of airway issues that need to be addressed by a competant EB doctor. A baby with Junctional EB is at an even higher risk of airway problems than our son with Dystrophic EB. Beth offered you her e-mail, she and her husband are a great resource and if you are in need of a referral to an EB clinic, please let them know as I am sure they can assist you.

Respectfully submitted by,

Barbara and AJ (RDEB 15 months)
adopt@embarqmail.com

Amber Schmidt said...

Yes yes... it is just like a car. Our daughter is the worst with her temperature regulation issues... i have to physically take teh thermometer into the office with the numbers saved for them to believe me!

Praying for you guys continually!!

The Mind of a Mom said...

Ohh a miracle for your little miracle! :o)

Anonymous said...

As the mother of a child with JEB AND airway issues, please listen to Sara, Beth, and Barbara. A doctor suctioning out Wesley's nose is what sped up our path of destruction. DO NOT suction his nose. Your child is giving you the classic signs of airway obstruction. Wesley ALWAYS sounded like air was moving, had a 100% pulse ox, was white, and had feeding difficulties. They did swallowing studies, x-rays, CT's and everything else you can think of, they only way to KNOW is to scope. When we were finally able to get him scoped he had less than 2mm of airway left and were told that he probably would not have lived another week. I had to FIGHT for this scope and it was the best thing I have ever fought for.
Heather Stone

Tribulation said...

http://www.ebinfoworld.com/ABCwrapping.htm

i found this website that may help you figure out some more ways to keep jonah safe.

they have THREE kids with eb so you might want to check it out.

Our family page said...

You guys, I know absolutely NOTHING about EB,except what I have learned from you. I feel so badly for you. Reading all of your posts and comments, I know you must be overwhelmingly confused. I am going to pray my big behind off that God will lead you to the right Dr. with the right advice on how to treat Jonah and that you will have a huge amount of peace. I remember how nervous I was as a new mom with a healthy child. I can only imagine that you are scared to death. Please know that I take it upon myself to be on what I call night duty. I generally sleep "on-call" all night. I wake up on average 5-20 times a night lately and I pray. I pray for whoever it is that needs prayer. Lately it has been for a little boy who was badly burnt and Jonah. So, when the Lord wakes me up, I start praying, so that you can get some sleep. It's like I am babysitting Jonah. So, when he is in trouble, I pray, the angels come and wake you up and you can take care of him. So, rest easy, God has it all under control! Love, Missy

Anonymous said...

I have been praying for Jonah for a while now and was so excited to see his healed little hand!!!! I was wondering if there is any way to copy the Praying for Jonah picture on the blog spot, so I could put it on my fridge, give it to friends and take to church so more are in constant prayer for Jonah! Love in Christ
Happy Easter!! Donna

Tricia said...

can you videotape him when he's having an episode and show it to the Dr?

Good luck and God Bless.

Anonymous said...

Happy to hear that Jonah is eating better and is less congested. And he SMILED at his daddy! Jonah is just waiting for the perfect moment to show his mommy her first smile! :-) Looks like from all the comments, you have a lot of information to digest; praying that you stay strong and aren't overwhelmed.

Gail
Annapolis, MD