Posts Tagged ‘hospital’

IVIG received – much needed

Thursday, April 12th, 2012 by by

On Tuesday, we headed out to our other new hospital – Huntsman Cancer Institute in St. George.  This is where Haven will get her port flushed every 4 weeks, and then every 6 weeks she will get her labs drawn, and then every 8 weeks she will get IVIG.  So, we actually get a one month break, and then we’re in ever two weeks for a month….then another month break.  Every few months she will head to SLC Primary Children’s for a full run down of labs and check ups.

Her room was very nice at this hospital.  It’s bigger than my labor and delivery room, and she had a private bathroom.  I was very surprised and happy.  She was very well taken care of. (more…)

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Discharged!

Saturday, April 9th, 2011 by by

Ava was discharged from CCHMC :)  Her EKG showed sinus tachycardia, and she now has to go to the cardiomyopathy clinic regularly and get echos every 6 months. She has to have an echo within the next week or so.  The cardiologist explained that since she has Mitochondrial disease, she has to be followed closely by the cardiomyopathy clinic.  Mito causes heart weakness (and many other heart related issues).  I also found out that her last echo showed a small VSD.  I didn’t know about that!

She’s home and still not feeling well, but hopefully she’ll start perking up.  Her oxygen needs have increased.  Her doctors said that she handles any illness a lot worse than “typical” children.  The smallest things really set her back.

We met a sweet 12 year old girl with EB from New Jersey.  Childlife asked if we could show her and her Mom Ava’s feeding tube.  Ava is very proud of her tube and was happy to show it off.  Ava was very impressed with this girl’s bandages (she has EB and wears bandages all over her body) and asked her nurse for some of her own.  Today the girl is getting her feeding tube put in.  I hope she does well.

Johns Hopkins / MIX 106.5 Radiothon

Saturday, April 2nd, 2011 by by

WOW!!! We got our card from Hopkins thanking us for being part of the 2011 Radiothon. We’re so happy to be able to do this. We’ve met so many families being part of the Johns Hopkins family for almost 4 years.

You can check out all the 2011 kids – HERE.

Thank you to every one that donated, especially our Haven readers. Total Radiothon dollars raised this year was $850,000. WAY COOL!!!!!

Just in case you don’t have time to click the link above and read about the Radiothon and how much it made, I thought I’d share a snipit from Hopkins web site:

With support from the Children’s Miracle Network (CMN), the MIX 106.5 Radiothon has raised more than $13.1 million since 1989 for Hopkins Children’s, with a record $1.1 million raised in 2008. Hopkins Children’s is a member of CMN, an organization dedicated to helping raise funds and awareness for 170 children’s hospitals throughout North America.

Your donations are much appreciated!!!

Hospital pictures

Wednesday, November 17th, 2010 by by

Just to show you that being in the hospital for 3 wks isn’t all bad for her. 
(taken by my cell camera)

Painting:

Photobucket

Playing in a box:

Photobucket (more…)

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Missing Home

Saturday, November 13th, 2010 by by

Ava is still inpatient and and has been having a grand ol’ time here.  She got her wheelchair today (pics coming!).  She’s meeting new friends and is turning into a very social girl. She’ll even hug a couple of her nurses!  She and her friend Derby have become the girls of A6 south!  They’ve been neighbors for a couple weeks now.

I’m glad Ava is handling this admission well, but I’m not.  I miss my other children so much.  I want to go home.

We’re trying to decide if we can handle Ava’s GI problems outpatient or not.  She’s having some malabsorption problems.  I’ve been doing her hormone shots nightly without any problems.  Her blood glucose has been stable for a few days.  She hasn’t needed any oxygen in days, which is a great surprise to us all. :)

Ava’s new blankie!

Friday, May 14th, 2010 by by



I’m sorry I’m out of the loop this week.  Ava is sick again and we’re trying (and failing) to avoid the hospital again.    This Spring is being so rough on her, worse than Winter. My girl is struggling lately.   I did want to thank Lacey at Jaxson’s Blankies For Babes for her beautiful blankie they made her.  It’s precious.  Ava loves it!

I do have good news, her echo didn’t show any heart defects!  That’s such a relief.  She took her new blankie with her to get the echo, so maybe it’s good luck!!

When everything stops

Wednesday, March 11th, 2009 by by

It has been a very long time since Jonah and I have made an update on our journey together. We have written several posts about cloth diapers, rice cereal, and homemade baby food, however when events took an unexpected turn two weeks ago, I could not find it in my heart to post any of them.

To be told that there is something wrong with her child is a mother’s worst nightmare, and even if the ailment is temporary, as parents we live in the realm of “here and now” and everything seems to stop until our babies are well again. Two weeks ago, Jonah and I went to meet our new pediatrician. I suspected nothing out of the ordinary would take place; just a routine visit and an interview to make sure that she was the correct pediatrician for Jonah to see. When they weighed him, my heart sank. He weighed the same as he had on Thanksgiving. He hadn’t gained any weight. I knew that he was tiny, and he was skinny, but (more…)

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