homeward bound!

We get to go home tonight! Hudson never had to be put back on the I.V. drip. The Ibuprofen and Tylenol seemed to do the trick through the night. Today he had a dose of ibuprofen at 9 a.m. and hasn't had a fever all day. Although, yesterday's fever didn't start until 6ish, but I am just going to be diligent about alternating both pain relievers. The indicator for me today that made me feel comfortable leaving tonight was that he didn't sleep all day like yesterday. He was actually awake for much of the day. We even got to play on a floor mat, and I gave hime nice warm bubble bath too. He has been wide eyed and looking around and moving around too. Another awesome highlight today....I have not seen any tonic seizures....always a treat to get a break, even if it just for most of the day! He still has his cough but we have been doing lots of deep suctioning over the last couple days so he sounds better.

I am coming down with something...sneezing, scratchy throat and cough, chills...hopefully just a cold! Anyways the best place to recover at this point is at home and God forbid Hudsons fever can't be control they told me to come right back through the E.R.
We can use prayers that a return is not in our future and that he slowly recovers and gains his strength.

Can't thank all of you enough who cared to keep up with us and pray as we have endured a very difficult couple of days. A part of me is relieved that we have gone through this and he survived without any major complications...reminds me Gods plans are so much bigger for him than I can ever imagine, and I am so grateful!

"we are on a short leash"

Those were the words tonight from the resident doc. Hudson has a fever again. It started at 99.5 and within 40 min. was at 101.5 He felt hotter that that to me, I was holding him. The "look" became all too familiar....labored breathing, restlessness, heavy, glassy eyes. The fever simply begins his downward spiral and he spirals fast! He had 2 tonic seizures within one hour and that was with the rising fever.
Motrin has brought it down but we have decided to piggy back motrin and tylenol every 2 hours tonight. If this does not keep him looking like he did this afternoon we will have no choice but too put him back on the I.V drip. Good news is he has so far kept his bolus feeds down.

Even in one of the best facilities in the country, I have learned to be such an advocate for my child. A year ago I would never have spoken up, and direct the care of my son, I have truly become the greatest "uneducated" nurse when it comes to the healthcare of my child. I check all meds they bring in his room...they have mis-dosed his Zonisamide, and twice now his depakote. I wrote out the schedule of when I feed and which meds he gets with which feed. They have missed meds, and I find myself reminding nurses, asking where they are. It is a full time job, but critical in getting my boy through this. Part of the control freak in me has not allowed anyone, that being Paul, to stay overnight with him, as he insisted I go home tonight and get some sleep, but I just feel this is all so critical, which it is, and I am his main care taker...I can't allow mistakes to happen, and I am willing to run on only 3 hours of sleep for as many nights as it takes to see him through.
That is not to say....I feel like a zombie...the living dead....haven't showered...hair is greasy...deoderant is my friend cuz I have one sweatshirt and sweats to sleep in and one shirt and pants for day. I look the part... like a mom whose critically ill son has swine flu.
I planned to shower tonight...haven't got the energy...will wait for tomorrow morning... to get glam and actually put makeup on, and feel human. Hope that does the trick because I have a "tickle" and find myself coughing. and I have been chilled all day, and dream about sitting in a hot bubble bath...I am just hoping these are just symptoms of lack of sleep.

As always, thanks for keeping us in prayer, as we go through the night.

Our amazing soldier

Hudson is stable, praise God for that!
By 3 a.m. he got his seizure meds, and the I.V. fluids seem to help him. After posting last night when I got back in the room he looked like he was going down hill... again...quick, between the fluids and more ibuprofen he started sleeping more comfortably. The bad part is he has been having to get poked to check blood sugar, every 2 hours. His poor fingers look so pitiful covered in bandaids and dried blood. Today's nurse has been going for his toes, but just a bit ago we got the o.k. to take him off the I.V and actualy start administering his regular bolus feeds.This means no more blood pokes every 2 hours-yeah!

He is still very congested and coughing and the lungs don't sound clear, but they are really monitiring his breathing still. Right now it would be nice to see him tolerate his feeds, I am sure that will be instrumental in a quicker discharge, although they have talked nothing about letting him go.He has been sleeping all morning, very sound asleep. He did have a tonic seizure once he woke this afternoon, follwed by the "shakes" as if he had the chills. He looks very pale and frail, but it was nice to see his eyes open, even though it was only a short time. He has had no fever today.
Paul got Hunter to school this morning, another praise....he is the only one still healthy. Hailey is at her Nanna's (my mom's) but my mom is sick with a bad cold. Paul said Hailey had a fever through the night and this morning. When I talked to her she sounded good and she told me she ate pancakes! She must be feeling a little better. :) I guess HR kicked Paul out of the office so he is here with me and  Hudson working out of our room. They told him to take the rest of the week off, which will be a huge help. (although Paul won't he will just work out of the home I am sure...workaholic)
Hudson has amazed us all, he is a strong boy and I know the Lord is filling him with the fight, and the strength to endure and defeat all odds. As parents we are in awe of him and his strength. We also know this fight wouldn't be acheivable with out God walking us through this battle....I have always felt Hudson was one of Gods mighty, littlest soldiers.
Thanks for all the encouragement and prayers...I know God hears every one of them and is working all of this for good and to His glory. We are filled with much hope that we will bring Hudson home, at some point, and he will be o.k. He is not completely out of the woods, mito can change his circumstances at any given moment, but we are so hopeful that our soldier will continue the fight.
If anything changes I will post....keep the prayers coming!

I didn't want to be here, doing this....

It is 1:15 a.m. and I am writing this from Seattle Children's. At 4:40 p.m. I took all three kids to their PCP, although the appointment was only for Hudson and Hailey.
Hudson very quickly was deteriotaing this afternoon even though I wasn't seeing a huge spike in temp...he fell in and out of sleep all day and not moving much. The pediatrician took one look after getting his info and history and was either calling the medics to take him by ambulance to our local children's hospital or would allow me to drive him to Seattle Children's as long as his O2 levels were at 98 or above. I sat there praying that I would be able to transfer and that is exactly what I did. The Pediatrician did the nasal swab on both kids and Hudson came back positive and Hailey negative. Paul is at home with both kids and I am at the hospital. We made it here at 7, and Hudson looked frightengly horrible, his breathing has been labored all day and he seems to be working so hard to breathe. Hudson took priority in the E.R. and they got him in a room as soon as we got there. His temp was 103. By 10:30 we were admitted into the hospital and got a room. He has had blood work to check oxidation and how well his body is absorbing oxygen, it came back good. He had urine and blood drawn and so far it has all come back good. He had a chest xray showing he has viral pneumonia associated with the flu, not bacterial...that's good. We will get confirmed results tomorrow on the actual cells in the nasal cavity to confirm N1H1. He is very, very lethargic, glassy eyed, gurgly, and his seizures have been odd. His poor feet and hands are icy cold and his body burning hot. They have finally started I.V. fluids and he just now got the tamiflu and his regular seizure drugs. I hate the pace of the hospital, any hospital...my kids is burning up and when I left to get a snack cuz I have eaten nothing all day, and do this post we were still waiting for the Motrin and Tylenol...ggrrrr! I wish I had some in my purse, to speed up the process!

I won't be able to answer personal emails at this time, so please, any of you that want specifics, when I update tomorrow I will check the comments section for any questions and answer them there. Hope that is o.k. as it will save me time!

Need to go be with him now...prayers are everything to us right now...Hailey had a 100.1 fever along with Hudson at the PCP. I am worried about her too, but she is in Daddy's care...our whole family needs lots of prayers right now...this is killing me to see my baby like this....I wish I could trade places with him....relying on prayers.....