Be Joyful in hope, Patient in affliction, faithful in prayer. Romans 12:12

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Saturday, October 6, 2007


In case you haven't figured it out we are in the hospital again and have been since Wednesday. Jophie was doing very well. In fact I had just made the comment that I felt as though "finally" we've made it out of this storm then next thing you know we're dodging lightning bolts and twisters all over again.

Let me just prefice by saying I still believe we are making progress. Overall on the infection front we've got the tiger by the tail so to speak however, we now have this darn hypernatremia to deal with.

Look at this picture. Is it just me or can you see how swollen his face looks??

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. 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.......

1 comment:

Cathy Hengst said...

Thinking and praying for you Trina and Jophie! I would love to help out in any way that I can from another state! Is there anything at all you need etc!


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