Monday, December 31, 2007

Hello there. We had a pretty good night. Elijah was only up a couple of times, but we were all able to get some good solid sleep in. His WBC is down to 1K, which only means one thing NO immune system. Mamma is paranoid!!! The oncology nurse came to talk with us again today and tried to remind us that yes we have to be careful, but he also has to have a normal life. She also reminded us that his own body is his worst enemy as far as bacterial infections are concerned and that it's inevitable that he will get some viral infections like a cold, but as long as he doesn't have a fever we should be pretty safe. They seem to stress the fever thing a lot and she even said that they try to scare parents with that because besides the disease itself, a fever that isn't treated soon enough could be fatal. They transfused some platelets this am because they were going to remove his central line and extubate him. His platelets at 04:00 were 21. Normal for platelets is 150-250. This is what can cause him to bleed and bruise very easily. he has some bruising on his arm just from taking tape off. They removed his central line with him still intubated so that he wouldn't fight and cause it to bleed even more. They had to hold pressure on it for ten minutes and they thought this would be easier if he wasn't awake. The best news today are a couple of things. One, he is now extubated and doing well with it. They did put him on what they call heli-ox. It is helium and oxygen mixed together. The reason behind this is when the two are mixed together if forms a less dense air. Oxygen alone is dense and they explained it by saying the less dense it is the smoother the air flows so that if there is any swelling of the vocal cords or pressure on his trachea, the air will flow through easier. It's easier to understand with hand movements, and from the doctors who know what they are talking about. The second piece of good news is that all of the doctors (pediatric intensivsit and oncology) and nurses seem to be very pleased with all of his labs and numbers. The oncology nurse even said to us that they couldn't ask for any better at this point. There are several of his labs and numbers that are still in a critical range, but they expect that right now. Elijah is still on some sedation medication that they will slowly wean off over the next couple of days. The staff doctor says that we can plan on staying in the PICU for the next 3-4 days, just to make sure he is stable and his airway is okay. They are also going to give him a drug they call methadone which is used for withdrawal. He was on a narcotic for 7 days so he will have to go through withdrawal but this medication should help with that. We are still waiting for poop!! I never thought I would be praying for my three year old to poop, but he really needs to. We had some friends from my work visit today (Amanda, Wendy and Audra). It was nice to see some new familiar faces, thanks for the bag of goodies that was very sweet of you. Thanks to all of you who are willing to help out when we get back. I got a comment from Teresa Giles about the sign-up at church. We can't even begin to say how much we appreciate every one's willingness to serve and help out. It's absolutely incredible and I don't know what we would do without our support system. Thank-you, Thank-you, Thank-you. It really does mean the world to us. Hope I have more good news to report later. Bye for now!!


tmd said...

Tami, Dennis' nurse at Walnut Creek Peds, gave me this blog to check out. I'm your neighbor across the street who met Elijah on Christmas Eve. I want to let you know that I've been praying a lot for you and Elijah since then. I had intended on bringing over a Christmas treat for you since I hadn't gotten around to introducing myself yet, but I'll come knocking on your door when you are back at home. God bless you all.

Ben, Rebecca & Natali said...

You guys are in our thoughts and prayers daily. Thank you for all the updates! We are anxious to help in any way we can.

The Fluhmans

Anonymous said...

I just wanted you to know we're thinking about you and praying that everything goes well. We're so sorry you have to go through this. Please let us know if there is anything we can do.
Love, Amy & Vik

Anonymous said...

I just wanted you to know we're thinking about you and praying that everything goes well. We're so sorry you have to go through this. Please let us know if there is anything we can do.
Love, Amy & Vik

MichaelandKyra said...

Elijah, despite those tubes around him and in him, looks more beautiful and wonderful then he's ever looked. It's because of you Amanda and Levi who are making it possible. You both get the parents of the year award for sure. He is fighting it and in the pictures you can tell. That's what is so amazing. Make sure you guys remember to eat to keep up your strength. If they had a kitchen there you know I would be cooking up a storm for you, your family and the nurses there. Viva la Chef. I wonder if the nurses have some secret kitchen on the floor?Love you

Leslie said...

Levi and Amanda - I am so sorry to hear about Elijah. If there is anything we can do please let us know. We will keep your family in our prayers. I hope he continues to improve. Merry Christmas and we hope you have a happy new year. Take Care.
Love, Gary and Leslie

Anonymous said...

Levi and Amanda - You and your family are in our prayers! I was so happy to see you'd had a better night! We're praying for more good nights and days!(and for that poop!) Please let Jack & I know if there is anything we can do for you! We love you guys (and miss seeing you every week at church!)

Love, Jack & Steph Ruby

Jeni Depue said...

Amanda and Levi,
Happy New Year! I will pray for POOP! Keep your chins all look great! Love the picture with Bruce...we love him at our house also!

Jeni Depue and the Depue Zoo!

Anonymous said...

We want you to know that we have been praying for Elijah and your family.


Dan and Emily Hodson

Jennie said...

Amanda, Levi and Elijah,
We just wanted to let you know that you are still in our prayers constantly and in our thoughts always. WE are so happy to hear that things are looking positive as hard as this situation may be. In church on Sunday,(Spanish ward for us)it was announced over the pulpit to pray for your family. So not only are you getting the prayers of people that love you but also the prayers of those who don't know you at all. We are happy to see that Elijah got his frog blanket. I'd thought he'd like that! :) Love you,
The Heileson Clan

TheBeans said...

The common theme in all of these comments is that you are in everyone's thoughts and prayers. You guys have certainly had a lot of challenges over the past year, and we pray that the Lord will bless you with peace and comfort as you endure this latest trial.
We live just down the road, so if you guys need anything taken care of at home, please let us know.

Brent, Suzie, Megan, Joseph, and Sarah

The Jones Fam said...

Amanda and Levi,
We are praying for you and thinking of you. You both amaze me with your strength! Elijah is so lucky to have you as parents!