Saturday, March 28, 2009

So Much For Synagis

Nathan has RSV. He managed to get it even with the synagis shots. Poor little tyke is really feeling lousy.... he has fevers, funny nose, and is struggling to breathe. His oxygen numbers are lower than they have been since he was a little guy (few months old).... hopefully he'll pull through without needing more interventions than the usual pulmicort and albuterol.

Alex is also sick with RSV and is on his flovent, albuterol and prednisone.

Andrew is sick with cold/flu/who knows what.... on again off again fevers and a bad cold. Last night I got to see his dinner second hand when he vomitted all over his bed at 2 AM. :)

I hope tonight is a better night!

Friday, March 20, 2009

No More Synagis

Today was a a milestone day for Nathan. He had his last synagis shot - probably for the rest of his life! Every month during RSV season for the past two years Nathan has received two shots of synagis to help protect him from RSV. The shots have to be special ordered, cost about $1,500 per shot, and are pretty painful. Today when the nurse came in with the syringes, Nathan started saying "no no no no".... I was thrilled to hear him use a word (hadn't heard that one yet).... but felt badly for him that he knew what was about to come.

In any case... RSV season will soon be over and Nathan will probably not need the shots next year. So.... today was his last ever synagis shot!!! He has no way of knowing that is the case, but we do. I'm grateful that he's had the protection, but I'll be glad to not have to take him in for the shots any more.

The pediatrician had a preliminary report regarding Nathan's EEG. It is amazing how fast records can be transmitted in this electronic age. The pediatrician didn't really know much.... just that the preliminary reading showed some "sharp waves" in the occipital region... We'll have to wait on a neurology appoinment to find out more, and to reschedule the polysom study.

Home Sweet Home

We made it home last night. Thank you everyone for praying. Nathan was super happy to be home and to be able to run around free of wires! :) Alex, Andrew, Elizabeth and Herlinda made us a welcome home sign and a welcome home cake...... Hutch took care of Nathan in the middle of the night last night and I got 8 hours of sleep.... it felt so good!

Nathan had a rough time getting his EEG leads off. He's just like another family member of ours (and it isn't me!)... when he gets stressed he falls asleep. So... when the tech started taking off the leads, Nathan cried for a moment and then fell fast asleep for the next hour. I was even able to wash his hair while he slept... the tech hadn't ever seen anything like it!
For whatever reason they insisted on keeping Nathan's IV in until we were literally ready to walk out the door. It was the very last thing they did before discharge.
If you look closely in this picture you can see the red marker on Nathan's head that they used to mark the spots where they wanted to place the leads.
Nathan has a new buddy - his stuffed monkey. He held it throughout most of his hospital stay.... and he even tried to share his binky with monkey... and got quite upset that monkey didn't open his mouth. :)
After he woke up, Nathan enjoyed his cheerios and yet another Wiggles DVD.... still sporting his IV.
If you look closely at Nathan's forehead you can see red mark... the tech had put Nathan's head wrap on too tight. They didn't realize it until they took it off. He has several nice "abrasions" on his head where the metal pushed into his skin. Poor kid!
After we got discharged Nathan and I met up with a friend who is home on furlough from Tanzania.... Nathan was thrilled with the little red car that Louise brought him. Mommy was thrilled to be able to catch up with Louise while enjoying lunch at Bertucci's. :) Thanks for making the effort to come meet up with us Louise!!!! We hope to see you again soon!

Thursday, March 19, 2009

Homeward Bound

Looks like we'll get our walking papers in the next few hours.... It's a good news/bad news situation. The doctors came in and explained that the EEG through yesterday had come back normal... but that it is bascially meaningless info... as he has his episodes and we still don't know whether they are seizures.... however, they wouldn't likely treat with medication when they are so infrequent. So, perhaps it doesn't matter whether he is having seizures.

They canceled the sleep study which was to happen tonight becuase Nathan continues to run a fever..... this is day 6 of fever. So, we'll have to come back again for an overnight sleep study sometime in the next month or so... and we can't get rid of the oximeter at night until he has the sleep study. :(

The doctors came back in again a few minutes ago and said that the EEG has shown some "sharp" waves.... and asked a bunch of questions about Nathan (whether he gets pale with these episodes, has trouble regulating his temperature, vomits...) - stating that there are various syndomes that can be associated with these sharp waves... the waves don't indicate seizures, but indicate something else... then the doctors said they would speak to Nathan's neurologist about it and he would talk with me about it.... got to love the "just enough info to worry you, but no plan to speak with you anytime soon".... happens a lot I'm afraid. The doctors also suggested that it might be a good idea to put Nathan on long term monitoring at home... so... having him wear this head gear for a few weeks at a time. That sounds delightful!!!!

So... that's about it...

I'm disappointed that Nathan didn't have any of his episodes while here in the hospital... i was hoping for a miracle. Obviously not part of God's plan to handle things that way.... and I'll wrestle my way through that one.... My emotions don't always keep up with my intellect as far as what I know to be true about God.

On the other hand, I'm thrilled that they didn't find something majorily wrong with Nathan. This floor of the hospital is full of kids with all kinds of problems - surgeries, cancers, neurological disorders... and I'm grateful that while Nathan is quirky, he is relatively healthy!!!

More when we get home.

Wednesday, March 18, 2009

He called me Mama

Nathan has referred to me as Mama, but he has never called me Mama.....

Last night, however, he called me Mama!

I don't need to say any more than that!!!!! I've been waiting a very long time to hear that word from him!! I'm ecstatic!

Hospital Update

It was a very long night last night! Nathan had a fever and was uncomfortable and slept only half hour or an hour at a time... So it made for a long night for Mommy. Nathan was cheerful when he got up for the day, though. He had cheerios and a piece of bagel.... and was thrilled to sit in a "big chair".... It's the small things in life, right? He almost managed to pull his IV out... no surprise there.
Today was "more of the same". We hung out all day... playing with Nathan's nemo balloon
Talking to doctors and trying to persuade people to not offer Nathan foods with milk in them. (They had a volunteer come around pushing a cart with all the "fixings" for strawberry shortcakes.... and asked Nathan if he wanted whipped cream... not a good thing! Of course he wants whipped cream!)
Nathan has already started with the Hutchinson trait of "dumpster diving".... he kept trying to pick things out of the trash can in the wall... not a great idea while in the hospital.
His monitors attach to a computer that is housed in the little black backpack that he is wearing. The backpack has a wire coming out of it that is attached to wall.
Nathan still has a fever, so we were not allowed to go down to the play room.... The nurses were kind enough to bring Nathan a supply of cars and trucks.
I think that Nathan loves trucks and cars as much as Andrew loves helicopters.
This shows you a view of the backpack.
Nathan does not care for the added weight of the backpack... makes him look kind of drunk when he walks... poor kid!
As to be expected, some of Nathan's leads came undone... so the techs had to undo his "hat", take off the faulty leads, and put on some new leads.... Nathan was not. a. happy. camper. to say the least. He is very leery of ANYONE who comes in the room...
This is what is under Nathan's "hat".
Nathan is going to need several good shampoos before all the gunk will come out of his hair!
This afternoon Daddy, Elizabeth and Alex came to visit. Mommy was SO GLAD to see them.... Mommy got to take a shower, take a walk, return a couple of phone calls, and take the kids to the cafeteria for a treat!
I think Nathan's gotten used to having Mommy around.... He didn't want to be left with Daddy this afternoon.... and made that quite well known to everyone on the floor!

However, when Daddy and the kids left tonight, Nathan didn't want anything to do with Mommy.
Nathan is sleeping now... and will hopefully do better tonight. So far Nathan has NOT had any episodes that I am aware of... so please keep praying....
Also pray for communication with the doctors. There are several teams of doctors and nurses up here. They have all beeen very nice.... but they don't communicate well with each other... and not so well with me, either.... there have been several snags in this whole process.... scheduling different procedures at conflicting times, not understanding why Nathan is here...
As it stands right now, Nathan will NOT be getting his sleep study tomorrow night.... so we may be discharged tomorrow afternoon.... and will have to return for that test at another date. I had questioned whether we really needed the sleep study and was told that the previous study had not been "entirely normal", whatever that means.... That was news to me! :)
Thanks for all your prayers and well wishes. Elizabeth, Andrew, Alex, and Hutch all seem to be doing well.

Tuesday, March 17, 2009

Nine North - We're here!

We're here! So far all is well... not easy, but going well.

Nathan was thrilled this morning when he was given his own personal DVD player prior to the MRI/MRS. He took the video out of the case, inserted it in the player and pushed the play button. How did he learn how to do that? He was still all smiles at that point. He did have a high fever when we arrived. There was some debate as to whether they would continue... but the doctor decided to go ahead.... so THANKFUL for that.
Nathan did well with the anesthesia... I entertained myself for the bit that he was "out" and when I returned Nathan was waking up and eager to see me. He had some juice and then fell into a deep sleep for about two hours.
Once in the deep sleep he started desating and they had to start some oxygen. After an hour or so of that he was much better. He was really conked out.... my poor arm had no feeling in it after a few minutes of his heavy sleeping.... but i loved every minute of watching him slumber.
We got up to our new room on 9 North around 3 PM. It is a little tiny room.... Nathan was happy to be able to walk around... and happy to have some more juice.
I got him changed and ready for phase 2 - putting on all the electrodes. One of our big surprises up here is that Nathan is required to have an IV... wasn't expecting that... and he doesn't like it one bit... keeps trying to pull it off. Nathan still had a high fever so they treated him with meds.. and may give him fluids later.
The nurses keep opening the door... and Nathan closes it again as quickly as he can. Our normally smiling boy has decided that he's had enough of that.... last time he smiled at a nurse he got "put to sleep".... he doesn't want anyone in this room!
Here's Nathan's new sleeping quarters.
My bed - the green chair in the corner... ought to be a really comfortable few nights!
Nathan likes the view out the window.. .it's a long way down to the street below... He likes to point and say "ball".... whatever that means. :)
Nathan was NOT happy getting hooked up to all the leads.... it took quite a while.... The person doing it was learning how to do it... and had to redo several of the leads. But... we endured and got it done.
Nathan has a new "hat"... the wires are mostly under the "hat"... and attach to the black backpack that I have to carry... the backpack is attached to a long wire that plugs into the wall.
All is well in Nathan's world at the moment - nothing a good Wiggles video can't cure!
Oh... that and a binkie.
Nathan fell asleep watching his video... the doctors haven't made rounds yet... so not sure if he is out for the night or out for a nap... in any case, i got some things squared away and got to log onto the computer.
Several of you have tried to call... it is much appreciated.... however, EVERYTHING in this room is monitored... so whatever I say can be heard on speaker in the next room... so I am not really free to talk much... that, and I will run out of power on my cell phone.... I love getting the messages you have been leaving though... I have a feeling it will be a very long few days.
I haven't been able to get a hold of Hutch and the kids to know how things are on the home front. Please keep praying....
The insurance company only approved a 48 hour LTM admission and a 24 hour polysom admission... so pray that Nathan would "do his stuff" SOON! :)
Thanks a bunch!

Monday, March 16, 2009

I'm Off To The Hospital

Lord willing, I'm off to the hospital with Nathan in the morning. This admission for testing has been a long time in the making and it will be good to get it done. Nathan will have his MRI/MRS study (general anesthesia) in the morning (11 AM) and then after recovery will be admitted on the long term monitoring unit for a few days. We expect to be there until Friday and then he'll have his repeat overnight polysom study.

Please pray for Hutch and the kids while I am away... hard enough to be in the hospital, but to be two hours away is even more challenging. Pray especially for Andrew - given his Asperger's he really dislikes changes in his routine... and he has plenty of changes to deal with this week.

As odd as it sounds, we are praying for Nathan to have one (or more) of his "attacks" while we are in the hospital. His drop attacks and breathing difficulties happen so infrequently and randomly that it seems like this testing is like looking for a needle in a hay stack. But... we know that God is in the business of doing the seemingly impossible. We, and the doctors, are really hoping that this testing will lead to a diagnosis of what is wrong with Nathan and wisdom as to how to treat it.

I can't believe how far our little miracle boy has come! For those of you who don't know... Nathan was born at 34 weeks due to my having vasa previa (different than placenta previa). He spent 23 days in the NICU and required blood transfusions and oxygen. He came home on oxygen and with an oximeter and remained on the oxygen for 10 months. He struggled with low tone (and still does)... and was quite delayed in most areas... they didn't know if he would sit or walk or talk.... For the first four months he didn't focus and didn't track with his eyes. They thought perhaps he had cortical blindness. Now he sees just fine. He sits and walks and almost runs. He babbles and is working on coming up with a few words. He loves life and is nearly always smiling. We're so very grateful.....

I don't know if i will have computer access at the hospital, but if i do, i will post updates here.

Thank you for praying!

Check out Doni's Blog

In my last post I asked you to vote for our little miracle boy. I had submitted his picture in a photo contest. Well... Nathan's picture didn't "win", but the picture that did win was stunning! Doni finished painting it and put it up on her website today. Check out the link below (previous post) and go see what she did! The link will take you to Doni's photography website. Click on blog to get to the photo she painted.

Thanks for voting!

Thursday, March 5, 2009


There's a photo contest going on on one of the blogs that I regularly read. The woman that writes the blog takes amazing photos and has started a new small photography business. One of the products that Doni offers is digital painting. I LOVE her paintings! (Check out her photography website for samples of her work She has offered to do one free 11x13 digital painting for the lucky contest winner.... and I'm hoping that lucky winner will be me! :)
One of the contest rules states, "Yes you can harass other people in to voting for you". SO.... I'm going to bug all of you to please cast a vote for Nathan.
How do I do this? Go to her blog and leave a comment voting for number 21. (Vote Here: ) To add to the suspense, Doni won't be approving any comments from new voters for a few days... so your comment won't show up.... but it will be counted!
So... if you are so inclined, please go vote for #21, our sweet little miracle boy!