Wednesday, October 28, 2009

jonah update

Just a short post tonight. I feel very tired and it's my night with Jonah, so I'm trying not to be up too late. Plus, I feel like I should spend some overdue time with my hubby and pretend to care about The World Series... ya know, cause that's what good wives do.

Jonah ate 20.8 oz today and maybe about an ounce of solids.

I gave him the Periactin today before his nap, and he slept for three and a half hours. I don't know if that's because of the medicine or because he was so tired from not having napped yesterday/doctor's appointment today. His sheets were bloody (not unusual) when he woke up and I could tell his nose had been bleeding (unusual), so I'll have to keep an eye out for that. If the new meds dry him out too much, we'll have to stop them... bloody noses and corneal abrasions are the last thing we need. He also seemed VERY itchy from the time he got up from nap to the time he went to bed... strange considering the new med is an antihistamine. AND he was irritable.

So anyway, those things could be coincidental, but I just want to stay on top of it. If the same stuff happens again tonight, and he wakes up irritable and itchy tomorrow, I'll discontinue it. Any of you EB peeps ever tried that med?

Okay, off to wash dishes and mix milk (and pretend to care about baseball).


Angela said...

Sorry to hear Jonah has the itchies. I found that Periactin helped my daughter sleep and nap better. I would suggest giving him the Periactin closer to when he's going to eat since the effect (increased appetite) usually kicks in within 30-60mins. I remember our GI instructed to give it to our daughter before meals. Good luck and get some rest =)

Anonymous said...

I hope he isn't having a reaction and I hope it all works out. We are all "on your team" (is that cosidered baseball lingo?).

Sounds like prayers were answered...and the surgery isn't a go as of thankful...hopefully you will all have some peace for a while.
Thinking and praying for you all 3 daily.
Wendee in Lewisville

Janel Waters said...

I know we live in totally different areas, but I don't know if its the weather, if something is blooming or what - but all day today I have wanted to RIP my skin OFF I itch so bad!!

Also - when I am itchy I am also *itchy - if you get my drift - irritability is to be expected when you literally itch everywhere at once.

Hopefully its not the meds - praying that they work for you!!


Kristen said...

I do not have an EB baby, but my little girl was prescribed Periactin because after she turned one she failed to gain weight. At first the medicine made her sleepy and irritable (one of the side effects), but it did increase her appetite. I hope it helps Jonah.

I know how frustrating it is when my little one does not eat, I can only imagine how hard it is for you. Sending you and your family positive thoughts all the time.

Anonymous said...

hello wendee again...just wanted to say to Jonah...Way to go...keep eating little buddy! My two little boys didn't love baby food either...we just started with soft table foods...Keep up the good work amaze me and so do your mommy and daddy! You guys help restore my soul and faith! Also wanted to let you know...God has some big plans for you are already fulfilling them! We love you!

Kristy said...

Praying for you.

Quick note about the nosebleed -- last winter Carson was having almost nightly nosebleeds (and I mean BIG nosebleeds). We started using a humidifier in his room at night and that was the end of the nosebleeds.

This winter - first night we ran the heat - yep, a nosebleed. We've been running the humidifier since and it has been fine.

We also give him saline spray during the day (when the heat has been running all day and all night). I wasn't sure if Jonah was old enough for that, but thought I would mention it.

Kristy - mom to Carson, 6 yo, EBS

Tiffany said...

I hope his "itchies" don't turn into something more. Praying for you all.

Mimmy said...

Patrice, I've been gone for a few days but am so thankful to read that Jonah is not going to need the tube right now. His "birthday" post touched me to the core. Jonah is such a luck little fellow to have you and Matt. Please know that you all are in our prayers.

Love you to Heaven and back,

Anonymous said...

Ugh, that is so frustrating! It's so hard to know what is causing problems when it comes to your baby and they aren't able to explain to you what is going on! I will pray that it was just a fluke and that those things clear up. Yay for a good nap today! Both of my kids napped today at the same time for 3 HOURS! I finally had to go wake them up because we were going somewhere. Long naps make all the difference for us moms!


Sara said...

Sami was older (3-4) when we used this stuff. I looked up the side effects and they scared me half to death! (

I second the humidifier, we still use one in Sami's room to help prevent nose bleeds and eye issues. Just make sure you clean it out every day (i know something *else* to deal with) but they like to grow mold and you don't need that problem either!

Jennifer, Sunshine, Angel, Miss Thang, My Birdy (formerly Baby) said...

I hope your night goes well as Jonah's. Praying that the nose bleed was just a freak thing never to show again. And if some of the side effects are sleepy & cranky, I would say don't expect too many results until he has a chance to get used to how he's feeling. He may be hungry from the meds but if he's also tired & cranky how likely is it that he is going to cooperate for meals?

Your son is loved beyond measure by his Father, our Father. Prayers are the answer.

Anonymous said...

Hi Patrice,

Doing my nightly check on our baby..I mean your baby. He is such a precious boy and I am joining you in prayer to ask God to wrap His healing arms around Jonah.

You probably know about this already but here's a website about something you should WIN. Hope you do...

Candice said...

God Bless you and your sweet family. You are amazing!co

Anonymous said...

I don't have any experience with EB but have been through everything wtih nosebleeds. After many years I learned to lightly coat the insides of my nose with Vaseline on a Qtip. Perhaps a little Aquaphor in his tiny little nostrils? (Not too much, air needs to move...)

Anonymous said...

Whenever we turn the heater on at night, my son gets nosebleeds from the dry air. Applying a little Vaseline on the inside of his nostrils (with a Q-tip) & keeping a humidifier in his room has helped tremendously.

Anonymous said...

Definately try a humidifier... get a decent one that will make the air nice and moist. It will help with the nose bleeds.

Anonymous said...

Hi Patrice,
I have never commented on you blog before, but I have been reading it since shortly after Jonah was born and doing lots of praying. My parents go to Grace (right next to Pinedale), so that is how I heard about your blog. I am a pharmacy student at UNC (tell Matt not to hold it against me, WF doesn't have a pharmacy school) and you brought up drugs, so I had to post =). Antihistamines are famous for drying everything out; so, despite their anti-itch potential, the drying is likely causing the itching and the nosebleeds. Also, don't be surprised if he has less urine output and dry eyes. I think that the humidifier is a wonderful idea. Also, antihistamines cause lots of drowsiness but, conversely, particularly, in young children, they may occasionally produce excitation. I hope this helps and I’ll be praying for Jonah.

triplehmoms said...

I don't have EB experience, but I do have dry skin and nosebleed experience. My nose can bleed for 30-60 minutes, easy, especially when super dry. We use humidifiers in every sleeping room of the house. It is a pain to clean them, but we don't clean them every day as someone mentioned here. We clean them each week with white vinegar and them bleach. We do change the water every day, but that's easy and only takes like 30 seconds to do. I was instructed by my ENT to put vaseline in my nose every day too. When I do it with my kids, I use a q-tip because their nostrils are smaller than my fingers. With my own nose, I do often just put it on my finger and wipe around in my nostrils. It helps TREMENDOUSLY!
Again, I don't know about EB, but could the lanolin in Aquaphor and any lotions you use be a factor with some things. My daughter has really dry skin and actually has a slight allergic reaction to lanolin. It's not enough to see, but lotions with lanolin (and lip balm too) do not do anything for her skin. We changed to lanolin free products, and that helped a ton too.
Yo hablo poco espanol y yo escribo poco tambien. Yo espero Jonah come mas comida hoy. Yo comprendo su preoccupada con este. Mi chiquita hija no le gusta comida. Ella le gusta dulces pero no comida tipica.
Buenas suerte!

*Mirage* said...

I agree on the humidifyer! My lungs get dry in the winter from the heater and I wake up gasping for air unless I have the humidifyer going. I've gotten nosebleeds from it.

Happy (belated) birthday to precious little Jonah! And congratulations on the weight gain! He's such an adorable little prince. :)