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For the past 2 weeks things have settled a bit. Granted his schedule is still very demanding but through it all I've managed to keep my eyes forward focasing on my goals. During his hospital stays I wasn't able to excercise like I normally do however, I still managed to lose rather than gain. Not huge amounts like when I was excercising but, a loss is a loss and I'll take that any day! :0)
I'm so thankful that I've been able to make it back to they Y and begin swimming once again. Just after 2 days I can already see a difference. I began this little journey on May 22 and to date I have lost 55 pounds and lots of inches. I have been taking pictures along the way but I'm not ready to share those just yet. I still have a long ways to go but I'm still going strong! I'm praying Jophie will remain well enough for me to continue on with what I've grown so accustomed to doing. Not only is swimming my most favorite thing to do but its one of the best excercises not to mention it has become my only reprieve from the stress of dealing with a medically fragile, chronically ill child. I can't even express how much better I feel when I'm able to get just that little 2 hour break.
My hope is that I will be able to pick back up following along and posting on Wednesdays. We big beautiful women do seem to do better in packs afterall! :0)
Good Luck everyone! I wish you a very successful week ahead! :0)
Wheeee! It's time! It's Time!
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Now go have some fun and win something!
Most of our outings entail a visit to the doctor, medical procedures/tests or worse hospitalization but thankfully this trip involved none of the above.
Jophie had been having a really good day Thursday. He was sooo chilled. All vitals looked good and he was full of smiles all day. We had been preparing ALL DAY because well thats what you have to do if you go anywhere with Jophie.
This is NOT an easy task
By evening I was preparing his evening medications/feeding/Water infusion/tubing/syringes so this could all be placed in a small cooler. I also packed some emergency meds to cover all possible complications while we were out. Now all that was left for me to do was shower and wait for Tammy(dear friend/nurse) to arrive at 7 p.m.
You truly never know what to expect when planning/traveling with Jophie. There are always surprises around the corner so needless to say I was a bit edgy. I wanted this to be a fun, relaxing trip for him. More than you know.
Tammy arrived and we got him ready. We started out the door and he started. Stridor, agitation and then a full blown asthma attack! I almost said "forget it"
I'm so glad I didn't! :0)
To pick out the larger portion of Jophies Wish. You see we had to take Jophie and let him actually sit in the theatre seats to see what would work best for him because of his back and limited ability to sit unassisted plus, we had to let him look at the tv screens to see which one he could see.
Jennifer(Jophies Wish Rep) had arranged in advance with Debbie(the manager) to meet after closing time. I was so thankful they were able to accomodate us.
When we arrived I had Tammy start Jophies meds while I went in and spoke with Debbie. It seems she has 2 family members that are immune compromised so she was very aware of the dangers to Jophie. She was indeed prepared for us! She sent everyone home except 2 employees who were very healthy. I can't express enough how much I appreciated them taking such precautionary measures.
And then she says:
"Jennifer said to pick whatever you want."
Be still my heart...Did I just hear what I think I did??!
I went back outside to pull the van closer to the front door and to begin unloading Jophie. This was a bit traumatic for Jophie as we were sitting at an angle which in turn caused us to transfer Jophie rougher than what we like. Can I just say I HATE our lack of safe/convenient/efficient transportation and or transfering of Jophie from van to chair. He always seems to get hurt and it just KILLS me!
By this time I was even more worried that this trip had been a mistake. UNTIL.....
We walked through those doors and let me tell you....I have no clue what it was about this place but he immediately calmed down. In fact you would have thought we had brought him to an amusement park. He was so fascinated by Big Sandy. How funny is that??!
Let me just show you how much so.....
Jophie seeing the Big Screen for the first time.
Take me to your leader! LOL
He sat like this for the longest time just staring and the best part.....It was a football game! Ah yes he is his mommas boy! :0)
Well alrighty then I guess he's chosen his tv. That was easy so lets move on to the next phase.
We headed towards the Theatre/Surround Sound packages and as we turn the corner........Everywhere you can see there are TV's! Rows and Rows of them.....
ON. HIS. LEVEL.
This was even more adorable! He had this look like......"OK can I have a wall like this at home" He just kept looking from one tv to another. Thank God they had the same thing playing on every channel or I think it woulda pushed him over the edge with so many choices! LOL
While he continued to drool literally over his newly discovered love for electronics, I stood off to the side and was just bursting with pride at my boy who clearly LOVES all things electronic as much as his momma. He's just like me folks and I LOVE it! :0)
OK next came the Theatre/Surround Sound package. The sales rep cranks up the sound and I kid you not.....Jophie was shakin in his chair and I looked like I had ants in my pants. He kept lookin around like Wow! "What kinda ride is this?" And ya know what....I could see in my boys eyes that he was growing to love this place even more.
Once we had all the electronics squared away we had to pick some seating. The theare seats were nice BUT, they were too big as in wide. The arm rests were pretty much non-existance which meant Jophie would have no support sitting up. Just when I thought all hope was lost I turned a corner and saw....
A chair like no other! This was a big ole' smoooooshy/marshmellowy/leather chair. Oh I just had a feeling. My gut was telling me this was the chair. The true test would be when we sat Jophie in it.
Need I say more??
All righty then! He's chosen his chair! This chair even goes all the way back like a bed and the best part is his back just sinks back into that leather and it doesn't hurt him. He's gonna love it!
As we were leaving we caught him peeking at his tv again. How cute is that?? All and All it was a productive and fun evening. The only thing left to find is theatre drapes, lighting and a cotton candy machine. I'll get right on that Monday.
And if by chance your sitting there thinking how weird we are for liking a trip to Big Sandy. It's OK. Really. I suppose we are weird and ya know what? I wouldn't mind calling up our new friend Debbie to see about spending another fun filled evening(after hours of course) in mine and Jophies new favorite vacation spot. And don't you be surprised if one day your browsing Big Sandy and you see this momma and her son all stretched out on those big comfy chairs watchin one of those big honkin screens!
Be sure and say HI when you pass by. Now pass the Cotton Candy please :0)
Jophie continues to do well. We are 5 days out since the last dose of antibiotic. We haven't gotten his sodium level yet. Labs were drawn Wednesday but the sample hemolyzed. This was repeated on Friday with results pending. Upset tummy, persistent stridor and bathroom woes continue to plague him.
For now we soldier on and continue claiming this verse.
God promises us in Isaiah 43:2 that "When you go through deep waters and great trouble, I WILL be with you."
Once again I have to stand on this promise and KNOW its true. I have to believe it will all my being. There is no room for doubt.
I have to Praise him even in the Storm and it does indeed seem to be letting up! :0)
Thank you once again Casting Crowns for this song and others that continue to be a soothing balm for my soul.
OK gotta scoot and yet again this momma wants to thank you from the bottom of her heart as you faithfully approach the throne in Jophies behalf.
Or how bout this beauty??
CASIO has generously offered one of these pink beauties specially bundled with a camera case with pink stitching and a pink ribbon-clad lanyard to show support of the National Breast Cancer Foundation (NBCF.
Lisa The Preachers Wife has a fun package too!
Click HERE for your chance to win Beths "Loving Well" Study bundle package! Cute bag included! Wheee!
Now I'm off to do a little Jophie update! :0)
This momma is playing Pollyannas glad game!
I'm so thankful we are home and even more thankful that he's finally looking more like himself. :0)
Here's a pic from early Saturday morning at the hospital.
Now isn't that MUCH better than the last pic I posted?
OK gotta scoot!
Thanks again for all your prayers as you persistantly approach the throne in Jophies behalf. I appreciate it so much.
I took this picture right when we got home from Sherries office Monday evening. Before we left her office he was acting "odd". Before we got home we had to give him tylenol to try and calm him which didn't even begin to touch his problems. I transferred him to his bed and checked his temp which was 101.2 and he was setting his monitor alarms off with a 188-200 heart rate. This was all so frustrating and odd at the same time. He was in wonderful shape until we took him out. We do keep his environment very controlled inside but I have no control over the outside environment which lately seems to just make his body go haywire.
Please bear with me as I talk my way through this. I need to do this for many reasons but mostly so all these thoughts/symptoms can be in one place in the hopes that maybe I can piece this together or better still someone reading might say, "Hey, I know whats going on".
The last 4 days I have been cramming my brain with as much information as I can concerning Hypernatremia that is after I bout ripped my hair out the first 2 days trying to stay online! It musta been a server problem but I like to think I'm some big computer guru so for now I'm saying I fixed it. :0)
OK.....Lets start with a definition because thats where I started.
The normal concentration of sodium in the blood plasma is 136-145 mM. Hypernatremia is defined as a serum sodium level over 145 mM. Severe hypernatremia, with serum sodium above 152 mM, can result in seizures and death.
Jophies level was 157 when we arrived at the hospital and suffice to say he was very ill. Once the labs showed such a high number they triple checked it then swapped his fluids out for a cocktail that slowly reduces the sodium with slow being the key. IF you drop it too fast it can cause cranial hemorrhage and that my dear friends is when I decided I'd better educate myself a bit more on this little problem.
As you can imagine my mind is all over the place trying to piece this all together. I have lots of questions and unfortunately there aren't too many answers and that drives me crazy or should I say even crazier than I already am. :0)
I've picked my brain to death trying to pull clues from what I've observed over the last few weeks. I've even went back over a year because honestly he's been having problems for over a year now.
Here's where I begin to ramble on and on which I've been doing for days but now the only difference is I'm making you listen to.
How long has this been going on? Is it possible that this is whats been wrong for over a year now? He presents with dehydration almost every hospitalization even when I think he doesn't appear dry to me. He's been spiking temps for over a year in which some are related to infection but other times we just scratch our heads. Both the dehydration and the temps are symptoms of hypernatremia as well as seizures/seizure activity, jumpiness and one of the scariest ones is paralysis of lung muscles. Umm duh....His lungs are so compromised to begin with so can't you imagine how much trouble he'd have with this going on?? Could this be the source of all his pain over the last few weeks?? Now am I just crazy or does this scare anyone else?? Maybe I'm just being a wacked out anal mom??
I find myself questioning my sanity all the time especially when the docs don't seem as alarmed as I. Often I wonder how much they really do know about something unusual? Do they go and look it up to prepare themselves so they can care for the patient better? I know I would for sure especially after dealing with Jophie all these years (who does not follow the book by the way) it tends to make a person a bit more cautious ya know?
The plan so far is to continue lowering his level with the fluids and pushing more free water via his Mic-key button. Course he has to be poked to death to get those levels. He started at 157 then dropped to 153 then to 151 and hung out at 151 then finally Friday it was 144 which is within normal limits but still on the high side and now this morning....well yesterday morning he was back up to 151. Crud!
We actually were leaving Thursday but the Xray showed a probable left lower lobe pneumonia. We had to repeat that Xray twice and still they aren't 100% sure. I know your probably thinking why in the world can't they read an Xray?? Jophie has a more than 90 degree kyphotic curve. You don't have to know anything about Kyphosis to know that more than 90 degrees is a kiss your butt curve. Now let me paint you an even clearer picture. There's only one way to get an Xray of Jophies lungs. He can't lie flat on his back so I sit him up in bed on the side with his back to me then I place the film between my stomach/chest and his back and lean forward holding it in place then I have to pull his arms that are contracted up, back and to the side and still its not great. The reason he had so much trouble reading this one is because Jophies heart was in the way and no need to rub your eyes because you absolutely read that right. He is so curved that while sitting up his heart shows up in the lower left lobe of his lung. I know it makes me blood run a bit cold each time I hear it too.
I started this morning by trying to double his free water which would be 120 ml after his feeding. The nurse then came in and said the doc had written orders to do exactly what I was doing. That morning I was actually able to add 140 but by lunch he was drowning. He is very volume intolerant and with his lung problems if you feed him too fast or too much liquid he just drowns. It's really a touchy balancing act at best and thats when things are working properly. At the moment its going on 5 a.m. and I still haven't given him all his last meal nor have I started his free water not to mention I'm already short 120 from earlier in the day. At this rate I'll be up 24 hours a day but if it works it'll be worth it!
Tomorrow at noon they are going to check the level again. I sure hope all this work I've done this past 24 hours has paid off. If not then they need to start checking underlying problems involving the endocrine system and all hormone producing glands. We do know his adrenals are bad so it wouldn't surprise me if something else is as well with the steroid use.
Please continue to keep Jophie in your prayers. I'm also dealing with some things that should not even be an issue but are. It's literally driving me batty and I honestly don't have time for it but it's something I can't ignore either plus Monday the docs trade off. Each of the peds docs rotate as attending on the floor for 2 weeks at a time and just so happens the one coming on Monday I have issues with. I'll not go into details but it's a very horrible situation which once again I shouldn't be placed in. And last we have a tentative date for Jophies annual fundraiser on October 21'st. I wish he could go but I'm afraid it's too late in the season to expose him to the germs that are raging. Sincere will be singing for us once again. I'll post all the details once they are all confirmed as well as contact numbers/emails in the event you are local and would like to help in any way.
OK...my eyes are literally slamming shut. I need to get up and move around to stay awake so I can finish his food/water.
Thank you all for your continued prayers. I appreciate them so much! :0)
Weary but not broken.......