Leslie, my thoughts and prayers are with you.. I hope Gillian feels better soon! Just an FYI and something to think about... we use an antibiotic lock in Devin's line and so far it's worked wonderful! With a bad bowel we get translocation of bacteria, which seeds the line. Boston Children's gave us the protocal on it. Just something to think about. Line infections make them feel horrible.. two doses of antibiotics and they are good again...
If I can do anything for you let me know...
Thoughts and prayers always!!!

Hope all goes well tomorrow with the removal of the Broviac. Too bad you couldn't bring her to Children's to have labs drawn, Verla in the outpatient lab is wonderful. She does most the transplant kids. Her and Megan have an interesting relationship, Megan has to have the sticker and sucker in hand before Verla can touch her with the needle.
If you need anything tomorrow I will be in the office and I need to run over to SLCH in the morning to get Megan some more Sensicare (Meg has had a diaper rash from an antibiotic all week).

Good luck tomorrow. Please let me know if you need anything.
Kristie

So sorry to hear about all the problems. Hopefully she will be able to kick this nasty infection once the line is out. Trust your instincts on whether or not you think they should put one back in. I am lucky in the fact that Gracie got use to the needles rather quickly and they don't bother her anymore. So the routine labs are rather easy on us. IV'S are another story. She will take "squitos" any day, but the "squitos" that have to stay in are not welcome at all. :) You know your daughter best so go with your gut!

Hang in there. I hope that you get to feeling better soon too!

I am so sorry to hear Gillian is having all these post transplant issues. Unfortunately, the first year after transplant is not a pleasant one. I thought we would never make it through it. Luckily, we haven't seen the transplant team since August and we do not go back to see them until March (Megan will be 2 years post).
Did Gillian's bottom get any better? Ask the nurse to get you some Sensicare (they do not usually have on 9 and have to call 8). That way you can see how you like it. If you need anything (like allergy medicine) please let me know. I'm going to school around 2 if you want me to bring you some sinus medication. Let me know.

Kristie 314-368-5696

I had a bad experience with a Broviac during Bryce's first 7 months in the hospital with a temp spike of 106 within 1 hour on the day we were supposed to go home for the first time. Bryce can be a hard stick as well but the frequency of labs decreases quickly and the risk of infection was too much for me to put in a Broviac, etc. especially with the decreased immune system. He doesn't like the labs draws but we get through them normally with one stick, now 1 time per week - I stay with the same people when they prove them selves and if I don't feel confident in the person attempting I boldly ask for someone new :) Lets face it we already have so much to worry about for me this was one less thing. Hope this helps and do what is best for Gillian. I'm praying and hope you will be home soon!

So sorry to hear that she is back in the hospital. Gracie has been the one to kick someone out of their room because of isolation, but oh well! At least you don't have to worry about all the extra funk!

Sorry about the nurses. I have had the same problem and I usually make myself known and that I am not happy. I know you have the debate of making the person mad that ahs to care for your child, but that is what they are there for. Shift change or not, they should have been in there. I would complain. Especially since it is not the first time it has happened.

I will say extra prayers that she starts feeling better and quick. And I pray that God gives you the patience you will need to not hurt any of the nurses!! :)

Take care!

That is awful about the mistake on the test! That is so frusterating. Isaac has to have urine tests ran every couple weeks to have his antibiotics adjusted and they often run the wrong tests. You think by now they would be used to it. Can't those people read? lol
I hope things get better soon!
Angie Thacker

Happy New Year Irons!

Hope Gillian's bum is doing better.

Kristie

Happy New Year to your family and hope 2009 is good for all of us newly transplanted families! Glad Gillian overall is doing well and hope you can get the diarrhea under control soon! Hang in There!
Tracie, mom of Bryce

Sorry to hear about all the diarrhea. Poor thing. I can't even imagine how painful it must be. If I was her I would be scared of going near a potty too. After all she has been through and now this. Ouch!! I don't know anything about Sensicare, but I have found that Happy Hiney is a miracle. It used to only be by prescription, but I think you can order it online from their website now. Not positive though. The quickest would probably be to ask her doc for a script. It has worked wonders for us. Hope all the tests/cultures come back alright.

Happy New Year!

Leslie, having a child with short bowel I can feel you frustration with butt issues. Sensicare by far is the best thing we've ever used. If you can get it apply a layer to cover her entire butt, be generous. If you can't get it e-mail me your address and I will over night you some. cmqrn@aol.com

Sorry to hear Gillian is having loose stools. Try Sensicare for the sore rear (Butt Paste did not seem to work well for Megan). I found this at SLCH Outpatient Pharmacy. It is a very, very thick skin protectant and it works great.

Kristie

I hope that Gillian's tummy feels better soon. It is very exciting that she got her kidney for Christmas! I am sure this will be a Christmas to remember. I will continue to pray that Gillian gets healthier and stronger everyday! We love boring too! Hugs from our entire family.
www.cotaforjaclynp.com

Hope that tonight and tomorrow are better and that she is feeling really good soon. I will pray that the remainder of your weekend is "boring" and that you have a good trip Monday.

I hope you are home with Gillian now. Merry Christmas and the very best of a new year. Trust me there are still some rollercoasters to ride but hang in there, it is worth it!

Merry Christmas Irons family - hope you had a good one and glad that Gillin is doing better! Hope we all have a good 2009 with our new kidneys! God Bless!
Tracie, mom of Bryce

Merry Christmas Irons Family.

The Grotes

Glad to hear the procedure went well and that you are getting to go home. Have a very Merry Christmas.

Kristie

Leslie, as always my thoughts are with you and your family... Praying Gillian feels better today and you are home bound..
Have a WONDERFUL Christmas... Don't think you can get a bigger or better gift this year!
Hope Gillian enjoys Christmas
Merry Christmas!!

Glad the stint is out.. I have been told that stints actually cause more pain, but when they are removed the patient feels so much better..

I hope this is the case..
Merry Christmas Irons Family.. WIshing you all homeward bound today.
Momma K