Jan. 18, 2008
Busy night ahead
Posted in Noah Updates
Noah is holding his own quite well, all things considered. His blood cultures have stayed negative (YAY) which means that this is not a line infection/sepsis but is probably more of a run-of-the-mill upper respiratory infection. His cough is a lot worse but there aren't any signs of serious problems there.
There are some problems on other fronts, but nothing that can't be treated. His hemoglobin has dropped to the point that he needs another transfusion tonight. Labs indicated that he *should* be making plenty of red blood cells of his own, but evidently he hasn't read the lab reports because for months now we have seen a pattern of transfusion, steadily dropping hemoglobin, repeat. This is probably just a budget issue. He's getting a pretty big transfusion tonight in hopes of getting him good and high so he has farther to fall before he needs another one.
Noah is also being started on IVIG. This is also a human blood product and consists of immune factors. Just like with the hemoglobin, Noah's labs indicate that he has perfectly fine immune system - but we know that functionally his immune system isn't too great or he wouldn't be inpatient for the 12th time in 10 months. This first infusion must be done inpatient to watch for complications, then we will come to Greenville once a month for outpatient infusions. They will take about 4-5 hours each.
Of course, Noah being Noah, nothing is too straightforward. We know from his blood pressure that his little heart isn't working as well as it should right now, and there is a very real concern that the transfusion and the infusion will overload him with fluids. He has just been premedicated for his transfusion. They will start the transfusion soon, and run it for 4 hours. Next he will be treated with Lasix to flush excess fluids out of his system. Once we see that happening (think soaked diapers), we can go ahead and administer the IVIG.
Both of these treatments are needed, and we hope that the IVIG will help him stay healthier longer, but any treatment with human blood products carries a risk. Please pray for safety, for effectiveness of treatment, and for the Lasix to do the job so Noah doesn't end up overloaded with fluids - that carries a whole host of possible problems. I would also really appreciate prayer that he and I will be able to get something resembling a good night's sleep. His vitals will be monitored closely and frequently through all of this and I'm hoping that all of the IV benadryl used with both treatments will be enough to keep him sleeping through it all come bedtime. :-)
On a Mary Faith note, I was able to go around the corner to OB triage (literally around the corner from Noah's room) and get today's non-stress test which was absolutely perfect. Our friends the Rausch's kindly came and played with Noah so that I could get away and take care of that appointment.
Noah's meds are kicking in and he is getting sleeeeepy, so I'm going to pick him up and enjoy some sleepy snuggles (and maybe a nap myself).
If all goes well, we may be going home tomorrow. :-)
Love,
Kate
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Jan. 18, 2008 - Untitled Comment
Jan. 18, 2008 - Untitled Comment
 Posted by Anonymous
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I will be praying for Noah through the night for his protection through both these transfusions.
Glad to hear everything went well with today's non-stress test. Almost there!!!
Judy
http://myadventuresinhomeschooling.blogspot.com/
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Jan. 18, 2008 - IVIG
Posted by ragamuffinsc |
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Hi Kate!!
I just want you to know that I understand all there is to know about IVIG. My Blake has been getting it since he was 6yrs. of age. This June will mark 10 yrs. of a lifesaving medicine that has enabled us to be able to enjoy our son.....
If you have any ???'s about this just feel free to give me a holler either by e-mail or phone!!!
Make sure they start VERY VERY S.....L....O......W!!! THis will cut out any side effects.
Good Luck with both infusions(we have been there...needing 2 different types of infusion at once, also) & we are praying for you & Noah to get a good night's sleep!!!
I do believe you will see a longer time between illnesses once you get on the pattern with the IVIG. We saw tremendous change in the amount of hospital stays & even in the "break through infections". Blake just had/has NO immune system to work with!!!
Take Care!!
Julie
http://www3.caringbridge.org/sc/blakester
The Greatest Adventure of MY Lifetime!!!
ps.......
You can go to:
www.immunedisease.org
The Organization is called IDF(Immune Dificiency Foundation) & you can register Noah as receiving IVIG & they will send you all you need to know & even be put in contact with a Peer member of South Carolina & get lots of info about IVIG & Sub-Q. Just thought I'd be a little helpful!!!
Edited by ragamuffinsc on Jan. 18, 2008 at 5:27 PM
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Jan. 18, 2008 - Praying here.. heard you got snow.. know a girl I think is in Greenville Childrens
Posted by Anonymous |
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Hello and God's Peace, I had posted last week about being blessed with another child after your child is very sick.
I have six siblings( of my 13 siblings I was blessed with) that live in the Greer/Lyman/Taylors/Inman area and my parents live in Asheboro NC but come to SC almost every weekend. I told my sister that I think you may have been in the ER the same night that she was there with her 8 month old son for dehydration! What a small world!
I heard you had snow yesterday! Too bad you couldn't "enjoy" it!
Also, there is another QF family (last name Niemitalo) who have a little girl who has tumors on her brain and spine. She had a brain tumor removed last Friday. I believe she is in Greenville. Just thought I'd mention it to you! Her dad and my mother in law are first cousins.. her name is Carly... thought you might like to know so that you can pray! I am not sure how many children they have but they do have quite a few and lost the one above Carly (she is the baby and I believe she is four) a few years ago.
God's Peace!
Sarah
www.caringbridge.org/mi/laban
talojs@aol.com
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Jan. 18, 2008 - Praying............
Posted by jkiessling |
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We will send prayers your way in many ways!!
Extra health will help for Noah and you all for the next few weeks when Mary Faith gets here!!
Hope all goes well!
Sleep well!
Hugs and Blessings from the Kiessling family from Fresno, California
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Jan. 18, 2008 - Untitled Comment
Posted by Anonymous |
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Praying all goes well tonight and that this will in fact give Noah an extra boost of good health during the time of Mary Faith's birth and introduction to your family.
Rest well in God's peace.
Love and blessings,
Pam in SE MI
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Jan. 18, 2008 - Praying for you
Posted by Anonymous |
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Hello, Kate. I am praying for you and Noah. The Lord is bringing you to mind quite frequently. I am so thankful that there is no infection to treat for Noah, and am praying for healing. I am specifically praying for the Lasik treatment- that it would go well for Noah.
May you have a peaceful night with your little one- even in a busy hospital.
In Christ,
Sarah E.
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Jan. 18, 2008 - Untitled Comment
Posted by Anonymous |
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I think of your family often and pray for you all. Hoping Noah makes a quick recovery and you have a safe delivery!!
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Jan. 19, 2008 - little note
Posted by llewis |
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Thank you for your updates. Noah is such a fighter. He is like a champion fighter no less. Keep up the good work, mom and be brave. My Jeff and I (Lauri)will be praying for your family as you get ready for Mary Faith. In Christ, Lauri Lewis (Toledo, OH)
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Jan. 19, 2008 - praying continually
Posted by Anonymous |
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Kate and family,
May you continually feel the love of your extended Christian community, brothers and sisters in Christ, supporting you. We are praying.
Sherry in Delaware
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Jan. 19, 2008 - Praying!
Posted by Anonymous |
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Kate,
Thank you for the updates. We are praying for a short stay at the hospital and then a long season of good health for Noah!
Looking forward to news of Mary Faith's arrival!!
Jennifer in Texas
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