Bethany Discussion Forums

Wednesday JJ had his soft palate reapired. We were hoping to go home today, but he has had temperature elevations. This morning it was 102.6. They haven't found the cause yet, but mostly due to room mates, I am only getting about 2 hours of sleep a night. I am tired. Please remember us.

Pat

Update: In spite of JJ having a temp again this am, the doctors decided it was viral and sent us home. I am very tired, but glad to be home.
Pat

Pat,

I know exactly what you are going through. It was rough staying at the hospital with Anna. I too was only getting a couple of hours of sleep and worrying like crazy. Anna got a temperature the night before we were to be released and we were in Chicago and were planning on catching a plane the next day. I was so worried we wouldn't get to go home. She continued through the night to have a fever and I just knew we were going to have to stay longer. But she was fine and they let us go. The doctor told us that many times children will spike a fever after surgery kind of the bodies way of starting to heal. I'll be praying for you.

Shelley

Hi Pat,

I've been wondering how things were going. You and JJ and the rest of the family will be in my prayers. I hope tonight is a better night so that you can sleep and that JJ's temps go down so that you can go home.

Jill

PAT praying for you & JJ,We also went through no sleep & a rough night at The Hospital with Amanda with her Cleft palate surgery GOD BLESS~Denise~

Praying JJ would feel God's healing hand and that mama can get some sleep.

Hi Pat,

I'm glad you posted, I have been wondering how you were all doing. I'm sorry to hear about JJ's fever and that you have not been able to go home yet. I will be praying for his recovery and for you to get some much needed rest. Hang in there, we'll be praying!

Slept better last night, but his temp was over 102 again. It came down to 97.9 with tylenol, but I am not sure that they will let us go home. We are setting small goals. We are trying to get scrambled eggs for breakfast. JJ is being picky and only eating orange jello and apple sauce.

Pat

PAT,at least hes eating something since Amandas cleft palate surgery shes not eating anything,im using an eye dropper to give her pedisure,if i give her apple sauce or baby bananas ,she has bad Gas& Tummy Cramps ,she had her surgery back in AUG,shes going to see a GI specialist ,but not until FEB,there ALL booked up until then, she also has a feeding specialist coming to my house next month,this has been so hard.I will be praying for JJ hope his temp goes down soon ~Denise~

Denise,

I am sorry to hear that Amanda is having trouble with eating. I will be praying for her.

Pat

Praying for you all!

Our Della has her palate surgery on the 30th of this month.....have been using all your experiences for possible scenarios....

Sooner the Better getting them to drink after surgery & keep up with The meds for pain around the clock,I have heard that this will Help them to bounce back sooner.PAT SORRY I didnt mean to vent at you,you are going through alot right now with JJ,Im praying that his Temp goes down & that you ALL will be Home soon.just get him to Drink & keep giving him Drink as often as you can even if its a little at a time GOD BLESS You & your Family ~Denise~

Abigail was given shakes in the hospital that I think they mixed it up with pediasure. She LOVED the strawberry one. Morning after surgery (lip revision, closed front and back of palate) they brought her a vanilla shake, she would scream, I would squirt and she'd swallow. When the strawberry shake came at lunch time she was opening her mouth up for more and just chugging it down as fast as I could squirt it in! She didn't drink as much after her 2nd surgery here (closing up middle of palate) but they let us go home anyways as she was happy, babbling, etc. We got home and she drank 24 oz. pediasure in @ 3 hour time frame! She had a new set of ear tubes done in May and she wouldn't drink in recovery room but as soon as we were in the van she started drinking.

Hope the fever goes down and stays down. Do what you can on getting fluids, etc. in him but don't sweat it as he may do a lot better with it at home. A pediasure shake or milkshake - feel free to ask the hospital for it, they can do it, whatever you think will work just ask for it.

Janell

He is actually taking things well orally. I've used my blender and stick blender to puree peaches, mandarin oranges, watermelon etc into drinks. I even took his favorite boiled dumplings and pureed them with chicken stock and fed it to him and he liked it. He hates his antibiotics and this afternoon I almost had to lay on top of him for him to take it. Tonight I told him that he could take it the easy way or the hard way. Since his dad was drawing up the medicine, he chose the easy way.

I really didn't get a chance to take a good look at his mouth in the hospital. I was holding him and encouraging him to open up for the doctors. Tonight I looked at it. While the repair was of the soft palate, they did incise some of the tissue of the hard palate. Along the mid line each side of it, the tissue is whitish. Almost like they cut the skin and are letting it heal in on its own. I may call the on call clinician tomorrow just to make sure that all is right. His temp went back up to 102 tonight. Very frustrating.

Denise, no apology needed. I did not take any offense with you voicing your frustrations with Amanda's progress.

Pat

THANK YOU PAT,I just wanted to make sure I didnt upset you.Im still praying for JJ Healing.its hard on these little one ~Denise~