Friday, March 13, 2009

Frustrations...

We have had a crazy frustrating day. We started this morning with a major lab error which sent everyone panicking of Gavin's platelets being 17. They were not 17 but with starting the Omegaven it gave us all a scare. We had an OR time of 10:00 which was bumped to 2:00. Around noon Gavin decided to spike a fever. Great. Dr. Katz came in at 4:00 and said we are not able to place the line due the possible infection.

To make matters even more frustrating we are fearing Gavin is having a reaction to the Omegaven -- with the fevers. One of the reasons for Gavin not being able to tolerate the intralipid is due to the high fevers it caused. In this case we are actually praying for a line infection and not a bad reaction to the Omegaven. Also Gavin's triglycerides are very high this morning and is they are higher tomorrow we will need to take a break from the fat. Gavin always had had difficulty processing the fat in his TPN, in fact we had an episode last year where Gavin's blood was light pink and his triglycerides were 3000 --- yikes! His levels are no where near that but it shows what a crazy guy Gavin tends to be. We are also removing the Foley tomorrow morning and we begin strait caths every 4 hours. -- Oh gosh.

So here I sit at 5:00 and I'm rather bummed over today's events. We are getting ready to start another very long weekend and I'm wondering how in the world we are going to stay sane until monday.

It could be worse.

20 comments:

justcindy2 said...

Covering you in prayer right now. Hang in there.

Cindy

Anonymous said...

you will all be in my prayers this weekend....take care

Kathy in Texas

Anonymous said...

hang in there!!! I love you!
your sis

Jennifer said...

I just don't know what to say...I was hoping so much that the Omegaven would be a miracle drug that would fix so much; I feel my hopes dashed & know how desperately disappointed you must feel. I'm sure the seemingly endless hospital stay must really be wearing on you all...praying really really hard for all the bumps in the road to be smoothed out so you can all get home where you need to be, together as a family.

Kirsten Yarnall said...

Oh Karen, I am so sorry. We will be praying, praying, praying. We love you guys and pray that everything will turn around in Gaivns favor over the weekend.

Tiffani said...

my goodness. so sorry about the frustrations, I'm sure it only adds insult to injury...

Praying just a special comfort and peace over ALL of you this weekend! Hope it goes by quickly.

Anonymous said...

Hang tight. There have been a few reactions documented through Dr. Puder's research. Can they contact him(he is very accessible)? They started Ryan on 1/2 a dose for a few days, then bumped him up. His liver enzymes and c-reactive protein went higher, then slowly(as the c-reactive protein level dropped), that's when the enzymes(bilirubin-specifically) dropped. See if they will do 1/2 a dose like we did. Hang in there, this will work.
Katrina

kyna said...

Love you, and we are praying for you!

Anonymous said...

I have a chart to show you how his labs may look from day 0 to day 48, you can show this to the doctors to hopefully ease everyone's minds...I am e-mailing it to you now.
Katrina

Anonymous said...

Just found your blog and I wanted to say that Gavin is one of the most beautiful babies I have ever seen. Grace and blessings be with him and with you.

Becky said...

we're praying for you this weekend!!

Anonymous said...

It could be worse, I guess you are right, but that just shows the faith you have, and hopefully Gavin and the Omegaven will work out their issues. Hope his pain is decreased and your load a little lighter. EP

Mia said...

UGH. And I just wrote how I wanted the discharge soon. Maybe they'll be able to get the fevers under control or find that it's from something else that's minor.

~ Lisa @ AbidingThere~ said...

Praying, praying. Keep us posted.

Sitesx6 said...

Oh...God bless you all.
I can't recall how I found your blog, but I prayed for Gavin this morning and I'll pray again and again....God comfort you all, I just can't imagine!!!!!!!

Hang in there!!!!!!!!!
God's peace
Kelly in Michigan

Anonymous said...

Is the Omegaven being run over 24 or 20 hours? If its over 24, it may be better to run over 20 hours and then take the lab draw on the 24th hour before the next infusion. This gives the liver time to clear it from the boby. This is part of the Boston protocol before dosage decreases are considered. I think the triglycerides get higher initially for the first few days because its the Omega 6's being released from the liver as the Omega 3's are taking their place. After that the levels should go downs. We actually had an attending stop the Omegaven because our levels were over 200 but I whipped out the protocol and told them to turn it back on. We use to be 330 on Intralipid (I know its not 3000) but now its like 24. I hoping things will turn around with more time. Good luck.

OConnor Family said...

Karen:

Sam's triglycerides went up to just over 300 the first week or so that he was on Omegaven as well. They stabilized and started to come down at about week three, so that might not be a "Gavin thing". If you, or the docs, are in doubt at all I would definately seek Dr. Puders opinion.

We're hoping for an infection for you, although I hope that is the first and last time I have to hope for that for you or anyone.

Jason, Deb, Ryan, and Sam O'Connor
www.samoconnor.com

Heather said...

Frustrations seem to be a frequent companion on your journey.For that I am so sorry and well ....frustrated for you as well.Prayers for infection,sounds strange to some but that is our prayers and we are sticking to it!!!

3saints said...

I am so hoping that you had a good Saturday and that thing get better, we've just started the mito testing process and I'm pretty nervous. Dr Puder actually did surgery on my son 3 years ago, just as he was starting the research on TPN...we talked to him a long time about TPN...it's such a small world sometimes...
Keeping you in my thoughts..
Warmly
Kate

Reagan Leigh said...

I'm so sorry for all of the junk you are having to deal with right now. It is so frustrating and I can only imagine how tiring it must be! I think of you all often and I will continue to pray for Gavin and your whole family. There's no place like home! There's no place like home!