Sunday, October 23, 2011

The roller coaster we are on....

Things have been really off around here for a while. And I haven't given any updates. It's not that I don't want to share what is going on. But rather that I don't want to rain on the SB Awareness parade with my personal struggles right now. On the other hand, I have vowed to be real, authentic and transparent here in all things... So I am going to share what is going on around here!

I am having a few "I HATE Spina Bifida" moments recently.

I don't think ANY mother like to see her child suffer. And I just happen to be able to blame SB for my son's suffering recently.

So... let's bring you all up to speed on what is going on around here.

Two weeks ago tomorrow, Nat went in for a routine dental procedure that he had to go under anesthesia for. He had an allergic reaction to the anesthesia, and went into full respiratory failure when they pulled the breathing tube out. He basically stopped breathing, and then his heart faltered greatly. He flat lined for a few seconds while they reintibated him (he was laying in my arms when all of this happened so I had a very clear view of all that was going on! Heart wrenching!) We ended up in the hospital for the night. He was vomiting blood, not breathing right, had low H2O saturation, and his heart rate was abnormally high.

The next day he seemed fairly stable so they released him to go home. His heart rate was still elevated, but they said that could take a few weeks to stabilize out, and his H2O saturation was still slightly down, but not in a dangerous zone. But he has not been quiet himself since then. He has had a bunch of problems, that all taken alone seem normal for him, but all added up are just wrong.

His current problems include:

~He has been having unexplained headaches pretty much non stop for two weeks. Some of them bordering on the migraine side with him vomiting and seeing lights (he does normally have 2-3 migraines per month).

~He has been battling a UTI, even though he was on a 10 day course of antibiotics to treat it. He also seems to have an irritated urethra due to a little "stubborn streak" he had the week before the procedure. We have had to adjust his cathing protocol to help with this. He finished his antibiotics, yet still seems to have the borderline UTI (for SB folks... he will be crystal clear one time, chunky milk the next 2 or 3 times, then clear again for like 24 hours. This seems to be happening at least once a day).

~ His kidneys are not functioning properly. And are giving him a hard time.

~His right ankle (the one prone to staph and ostio) is swollen, hot and VERY PAINFUL. The painful is concerning everyone because he usually has little to no feeling in this foot. This COULD be due to a change in his braces, but with everything else going on we don't want to completely write it off to that. We are watching this foot closely due to previous history.

~He is still not breathing properly and easily looses his breath or gets winded. This is NOT AT ALL normal for my energetic guy that can run for hours on end.

~Now on top of everything, he is not eating or drinking right for me. That is messing with his bowel management system that we have him on, and I personally think he is bordering on dehydration. Yet I am so hesitant to do a clean out on him with him already down and out. So hard to know what is the right call in the SB world!

Nat's doctor, when looking at all of these things together, feels like the medication that caused him so much trouble in the hospital is still in his system and causing havoc with him. Systems that are normal "weak spots" for Nat (that right foot, his urinary tract, his migraines) are all failing due to the stress on his system. The breathing and lung issues, his Dr feels are directly related to the respiratory failure when the intibation tube was pulled, then reintibabting him so quickly. Dr is hesitant to introduce any new medications at this time, he is unsure how Nat's system will react. So right now Nat is on full bed rest, in his wheelchair, and we are TRYING to convince him to eat and drink.

Needless to say... I have had a rough two weeks, and watching my boy so sick and being able to do so little is TOUGH!

Right now we are hoping and praying that rest and down time will help his body find center again and then get stronger, so in time he should be back to his normal self. But only time will tell.

Prayer is truly the only place of peace I have had in the past two weeks! I have spent an enormous amount of times on my knees! If you are a praying person, we would LOVE your prayer in healing Nat's body.

So, while I LOVE my son, and I am thankful beyond words he is in my life, Spina Bifida and all, I am SICK of the havoc right now. Now I KNOW there are those with SB FAR WORSE off than us, yet I also know that there are those with SB that have it way easier than us too. SB is a big ole spectrum and you can fall anywhere on it at any given time. We are on the hard swing right now, and I am personally DRAINED from it. But I have faith that we will find center again and carry on. I just hope center comes soon....

So that is what is happening in our corner of the world... what is going on in yours???
(Come on, leave a comment, I REALLY DO want to know what is going on with my friends since I have NOT had blog reading time recently!)


Michelle said...

Does he have a fever? The leg thing sounds so much like cellulitis. Poor guy. :(
My heart goes out to you - not out of pity or sympathy, but empathy. I know what it's like to be on the downside of SB and it is not fun!!!
I have Nate and you in my heart and thoughts and am really hoping he is feeling better very, very soon!!! xoxo

fivejensenboyz said...

My dear dear friend.....please know you are in our thoughts and prayers daily....put it all out there and it makes me SOOOOO sad and MAD at SB that something routine could cause such havoc for him. Praying that answers will come soon and more importantly that he will feel better ASAP and have no lasting effects. If you want to know what I'm about these days check my blog.... I know you are anyway!

{april kennedy} said...

Blake has just started saying his own personal prayers at night before going to bed. I will tell him Nat needs his prayers and we will add him to Blake's!

We are heading to SB clinic at Shriner's this week and also hoping to get MRI results with neurosurgeon. Blake just recently got glasses and is wearing them for everything and can't believe how much they help ease tension in his head!

We are rearranging our home constantly to try to make more room and trying desperately to try to at least finish one room so I can feel like remodel isn't happening all around me.

We are just finishing up Volleyball season for Kaia. She has excelled so much in this sport in such a short period of time and loves it.

Dave and I are working on a new joint handmade business making home decor and while it just adds another stress to our life....we are finding great joy in it.

Nervous about SB clinic and ACE malone decisions...but other than that...plugging away trying ot make the best of it. That's what's going on in our corner of the world.

Smile...God loves you!

Amanda said...

Oh Gretchen,
I can't beleive you are going through all of that stress and worry and still keeping up with all of the SB awareness!
I'm thinking of you both and sending you my thoughts and prayers.
I hope all of the rest will give Nat the strength he needs to give SB a big kick in the behind!

We are all good in Ontario - getting some cooler fall weather. Nick is going to be 2 in a couple of weeks - I can't beleive it!
My blog has been pretty depressing lately - but I'll try to cheer it up for you when you have a chance to blog-surf again!

And I LOVE reading about all the awareness! I tried to get my mom to send something in (to get a grandmother perspective), but I don't think she has.

Jamie said...

I am sorry you have so much going on right now. Man it stinks having a sick little one!! You guys will be in my prayers!