Black Plague..........

Or so it seems......

It started with me and was one nasty bug. Bronchitis, Croup, Sinus infection/ears then pneumonia! I don't get sick often but when I do look out. In fact 3 weeks later I'm still feeling the lasting effects of this..... No worries though this momma will be just fine.

Jophie on the other hand is not....

Jophie began acting ill about 5 days into my ordeal. We took him to see Sherrie his ped on Monday the 25th. She actually tried to put me in the hospital and for once Jophie seemed the healthiest one. How weird is that little twist of fate? Sherrie asked how I felt as far as admitting or going home. I truly felt he was good to come home and the girls and I could treat him there. Sherrie gave him 2 rocephin shots and sent us on our way with a script for a double round of antibiotics. Monday through Wednesday we worked round the clock treating him just as if he were in the hospital and all the while he was making progress.

Wednesday during the day he was just wonderful. Things were losening up and the temp was more under control. Late Wednesday night around 9 p.m. he had what I think was an asthma attack and from there everything went into a tailspin. My worst nightmare was unfolding before my eyes once again.

The next 9 hours continued on a downward spiral as things continued to worsen. By this time I had doubled his steroids, cranked his oxygen to 6 liters, was flipping him every hour along with breathing treatments/CPT and suction all to no avail. With each hour that passed all those supportive measures were becoming less and less effective and at 6 a.m. I knew he was in real trouble. I grabbed a very quick shower and opened the blinds to snow.

UGH....Could I not get a break?

I knew it was going to have to be cleaned regardless. I couldn't get out and an ambulance could not get in so out I went wet head and all. I was really worried I wouldn't be able to clear it all because at that point I was still fairly sick but somehow I managed to not only clear the whole driveway but the deck as well all in about 10 minutes! God musta had his hands mixed all up in that :0)

I get back in the house and he's struggling just to breath. I grab the phone and dial 911 to get the ambulance on the way then I phone Tammy(A dear friend and one of Jophies nurses). I needed her to be on the other line because I honestly feared he would die in my arms. I stood at his bedside with him in a sitting position with legs hanging off the bed and leaning into me all the while dumping albuterol unit doses in continually.

Let me just say this was only BARELY effective. I could NOT get his airway open no matter what. Tammy was my rock on the other end keeping her cool and in turn helping me to keep my focus. I know your reading this Tammy and I know I tell you this often but it never feels like its enough. Thank you so much for all you and your family do for Jophie and I. We couldn't survive otherwise. We love you!

The ambulance finally arrives which seemed like forever. In reality I know it wasn't long but it sure seemed that way. I do hate sending him alone but, there is no doubt in my mind that had we of tried to take him he prolly would have died in the van on the way.

Lora(Jophies other nurse) arrived about the same time as the ambulance. Once they were headed towards the hospital she helped me pack and load everything then followed up and spent the rest of the day with me. Thank you too Lora for everything you did that day.

Needless to say I was a mess and quite frankly still am. Tomorrow will be Thursday and I can honestly say I'm a bit antsy about it. The last 2 Thursdays have been just plain yucky. I hope tomorrow shows no signs of the same.

In case you haven't figured it out....Jophie is in fact in the PICU and has been since last Thursday. It took around 3 hours to stabilize him and I truly thought he would be on the vent when all was said and done. The PICU docs and nurses here are so amazing. They put him on Bipap in an attempt to keep him off the vent. In fact they were concerned as to whether or not they could even get him on the vent due to the progression and severity of his back/shape. This is such a scary thought for me and quite frankly I'm glad I was not aware of it till later.

For 3 days he was quite critical and so very touchy. Everything was messing up. His urine looked like black coffee or chocolate pudding. I've never seen anything like it. His potassium bottomed out and his temp soared all the while he continued to struggle to breath and the bronchospasms he was having were horrid. Each one you truly thought he would quit breathing. He continues to have these bronchospasms. The severity is not as bad but they are still just as forceful and draining of his oxygen and strength. He had one late morning that I didn't think would ever end.

Blood cultures were sent but we were unable at that time to get even a tiny bit of snot. He had absolutely no reserve so we waited. They started him on 3 antibiotics. Vancomycin, Zosyn, and Cephapime trying to cover all bases. The blood cultures came back clean so they dumped the vanc. A central line was placed so he would have good access. At the time he had only 2 teeeny ones in each wrist and both were either leaking or not working properly. While placing the line they tilted the head of his bed back and snot started rolling so they grabbed a sample. It later grew Pseudomonas. UGH! I hate that ugly beasty!

The line placement went perfect and still remains intact and working. One port got a bit sluggish but they hit it with some heparin and its working just fine now. Phew! We can't lose this line. He's still getting lots of fluids and antibiotics round the clock and a couple days ago we started his feeds at a very slow rate round the clock. We had to get some calories on that belly because he hadn't eaten for 4 days. So far he's tolerating this just fine so hopefully we can up the amount at some point.

2 days ago we attempted to take him off Bipap and put him on a venti mask which didn't go over well at all.....He bottomed out on his oxygen sat in about 20 minutes so back on the Bipap he went. Yesterday we tried again and he did much better lasting about 10 hours but he really had to work hard to keep that O2 sat up. He had a horrible night and it took him till around 8 a.m. to recover from it all and then it was time to go back on the venti mask. I was able to hold em off till bout noon which gave him a bit more time to relax. Today he did well on the venti again and slept most of the day. At the moment he's back on Bipap and having bronchospasms off and on but so far he's been able to recover from them on his own.

The PICU docs had a meeting a couple days ago about Jophie and they all feel he would benefit from a trach. Talk about being caught off guard. That was so unexpected and even still I'm trying to wrap my brain around it. The attending PICU doc came and spoke with me again to see if I have thought about it anymore. I did phone my friend Tammy and we talked a bit and then phoned Sherrie his ped. This is such a huge decision and I just don't want to make the wrong one. Today I could sense an urgency in his voice to proceed. They are in no way pushing me which I appreciate but at the same time I don't feel like I can ignore that urgency in his voice. I'd be lying if I said I wasn't scared. In fact I'm pretty much terrified and to boot its coming at the worst possible time. My biggest support system(Tammy and her family) is going to be outta town this weekend and thats exactly when they want to schedule it. Ugh on the timing.

Yep I'm pretty scared.

As of today he's still stable but I would say still in a very guarded state. He's sittin on the fence so to speak. No longer on the critical side but not yet far enough on the well side.

***Sigh***

I absolutely hate making these decisions.

Thats us in a nutshell for the last 3 weeks. Nightmarish eh?

OK gotta scoot. Please continue to pray for Jophie to overcome this bug, for me to make the best decision for him, for the doctors who are and will be involved with his care and this upcoming surgery. Gosh that makes it seem even more "REAL" typing it out.


Will update as often as I can now that I have my computer up and running! Can I just say Broadband....DUH? I had to call Gateway so they could tell me how to turn on my radio so I could receive a signal. Can I get one more DUH? :0)

P.S....I'm not even gonna check for misakes so excuse the choppy mess and pathetic grammar I KNOW Tammy is absolutely cringing over. Don't even lie and say you didn't notice! Your prolly correcting it right now....LOL

Trina

Hypernatremia............

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.

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.......

Lovely accomodations.......

I'm not complaining mind you. But lets be honest here.

• First and foremost we are here which sucks to begin with.
• We are NOT looking at the waves splashing on the sand from our ocean front condo.
• We are however looking at 4 "plain walls" aside from a Noahs ark border up top.
• 1 window facing a "brick wall"....lovely
• Unpredictable climate control. I will say I'd rather be too cold than too hot.
• The "new and improved" sleep chair which may be more pleasing to the eye but it sure is lacking in the back department. One word.......chiropractor.
• The rooms are small.....really small. We're talking the walls are closing in small.
• The food. OK what hospital food is good? I do know of one but it aint this one which tends to favor serving "mystery meat" which at times suspiciously resembles road kill or possibly the cat I saw walking about the parking lot? Nah I only jest.....Really :0)

The good news is.....The new wing is scheduled to open next month. A childrens hospital within a hospital! How cool is that! All the rooms will be private and rumor has it a shower in each room. Wheee! Of course with our luck they will just wheel these horrid new sleep chairs right on over. You know they will. LOL

It truly is going to be so nice. Pediatrics, PICU, and NICU will all be together with each gaining a few rooms/beds. This jump in size should also bump it to a level 1 treatment center. They've also hired a child life specialist which I've always thought they needed especially for the kids in the cancer wing. The other thing we are hearing is a second ER will be opening which will serve only kids. WOW! Do we ever need that. I do know they moved the old ER to a diff. location in the building so now I'm wondering if they will be using the old ER for the kids? I guess we shall see.

It probably seems kinda crazy to be excited about all the new additions but when you spend as much time here as we do additions like this can help make what is not so fun at least a bit more tolerable.

Ok onto Jophie news. His labs finally coughed up a clue for us. He grew klebsiella and strep in his urine. Lovely. He is now being treated with Rocephine which is sensitive to both of these bugs. The good news is he does very well on Rocephine and always seems to respond very quickly to it. After just a few doses I could already see improvement. I pray it continues to work and more importantly kills it completely!

The tentative plan is to repeat chest X-rays again in the a.m. and by that time the cultures that were re-drawn to just double check should all be doing hopefully "nothing". His last 2 chest X-rays did show a right lower lobe pneumonia but the last one showed improvement in airation so thats good news. We are hoping this new one in the a.m. will show even more improvement. IF all goes well and nothing new shows up the plan is to transition the IV Rocephine to something oral so we can go home on it which means so far he doesn't have to get another PICC line. Yay! More good news.

He continues to have diarhea and his little bum is still so raw/bloody. He also acts as though his tummy is still bothering him. He has TONS of gas/bloating/cramps etc......This all started around 3 weeks ago which was also about a week into the Vanc and Zosyn IV therapy. I'm assuming this is still in relation to that and as his body heals will resolve itself. Regardless, we need to pray about this because it indeed is a problem on many levels. I just hope I can keep up with his fluid demand once he is no longer getting IV maintenance fluids. Oh and the C-diff continues to test negative which is still more good news. :0)

Ok gotta scoot....

Thank you all so much for your continued prayers. We appreciate your dedication and commitment as you go before the throne in Jophies behalf.

P.S.....I haven't forgotten to share "our little adventure" to the hospital. I just wanted to save it for when I have time to sit and write it all out proper like. :0)

The Cabell Spa......

Just a quick update:

Jophie is in the hospital again. We've been here since Wednesday night. So far we are unsure of whats going on. My gut tells me its related to what he's been dealing with but I'm not 100 % sure. He is getting fluids for dehydration from the severe diarhea he's been having. It's not as bad as it was but still continues to be a problem non the less.

So far what we know.

• C-diff is negative
• Chest X-ray shows some atlectasis but not really any significant pneumonia. This is being repeated today.
• X-ray of sinuses was fine
• Echo of heart to rule out endocarditis is still pending results
• Basic labs like white count and such were within normal limits but leaning towards a "high normal". These were all repeated this morning.
• Sputum cultures are growing "something". Pseudomonas most likely but he is colonized with it and I honestly don't feel like this is an active Pseudomonas.
• Blood cultures have only been cooking 24 hours so they are pending as well.
• He continues to run fevers and is in significant pain without the pain meds. He even landed himself a dose of morphine yesterday. :0)
• This is insignificant and totally unrelated but fun for me to know. Jophie now weighs 81.6 pounds! Can we just say Honkin big Baby Bear??
• Today he is having a CT scan of his belly to rule out any problems with liver, pancreas, kindeys, gall bladder and or appendicitis. He is also having a repeat chest X-ray to make sure that atelectasis hasn't puffed out into a pneumonia especially after they've hydrated him. When your dehydrated sometimes the pneumonia doesn't snow up till your hydrated again.

Thats all I know so far. I need to go because at the moment I'm slowly giving Jophie some oral radioactive dye through his feeding tube so everything will light up on his scan.

Specific prayer requests:

• The biggest at the moment is pain management for Jophie. We've finally got him comfortable but it has taken the better of 2 days.
• The doctors will be able to figure out whats going on and start the appropriate treatment/s
• You could also pray that the fevers/symptoms/pain would just disappear into outer space then we could go home and pretend this never happened.

I'll try and do a more in depth update this evening as time permits because let me tell you....our adventure just getting here is nothing short of pee your pants laughter!

Can I just say call security/intruder alert, location changes, CRATER pothole, lift woes, flying reindeer, creepy strangers in dark parking lots and wildcat in a bag??

Ah yes you musn't miss this update. :0)

They Pulled it.......

This morning we got word that 72 hours after the PICC line culture was drawn it began growing something. Unfortunately this meant the line would have to come out.

This evening the old line was pulled and they started a peripheral IV in his foot. The line itself looked horrible. I have never seen one come out looking like that. In fact I have been uneasy about that line placement from the get go. They will be culturing the tip to determine exactly which bug is growing. He will need to receive the antibiotics in this IV for 48 hours and then there will be another minor surgery to have a new PICC line placed.

I honestly thought this would be an overnight hospital stay and for the first time ever I packed "light". I came armed with only 3 days worth of clothes and other essentials. Jophie has already used up his supply of clothes. The little messy booger. LOL

At the moment the little stinker is expressing just how ticked he is at me in the form of every annoying noise he can muster up. He may not be able to talk but he sure knows how to push all my buttons. I'm holding out hope for a much calmer Jophie in the form of benedryl he was given just a bit ago. If all else fails I have his cocktail of meds at 3:00 a.m to look forward to......

Surely he'll settle and sleep by then....

For now I find myself once again in a holding pattern.

• Waiting for the culture results
• Waiting for him to get better
• Waiting for him to calm down
• Waiting for the new PICC line placement
• Waiting to go home
• Waiting to sleep

And so we wait.......

The Blood Doesn't Lie........

Deep down I "just knew".

I always do and this ability can at times mean the difference in life or death for Jophie and at other times it absolutely eats away at my very being.

Ever since Jophies last dose of Amikacin on Monday "I knew"
Even the week prior "I knew"
Talking to the doctors office on Friday "I knew"
Through tears, frustration and even anger "I knew"
Driving to the doctors office just hours later "I knew"

Jophie had been gradually going down hill since Monday. I tried to ignore it. I tried to convince myself I was seeing things. I tried to reassure myself that he would bounce back. It was a nasty bug afterall so how could we expect him to be right back to himself so soon after?

BUT.......Deep down "I knew"

I really felt sorry for the doctors office Friday as they all became the target of my frustration. They were afterall the enemy right?

Wrong....

Even when she refused my request for more Amikacin.
Even when she said "He needs to be seen"
Especially when she said.......

"He might need to be admitted"

All these things I knew to be true and in Jophies best interest yet I resisted. And resist I did pulling out every stop. I tried reasoning. I tried whining(and whine I did). I tried persuasion and when that didn't work I resorted to begging. (Nope I'm not to proud)

And through this all "I knew"

I knew that he in fact was showing signs of regression rather than progression. I knew that he really did need to be seen. I also knew that all involved really did have Jophies best interest at heart.

I "know" all this. Really. I do.

We are so very fortunate to have doctors and nurses who love Jophie so much and yes they love even me at my most unloveable moments. I know I could never in this lifetime thank them enough for all they have done and continue to do for him.

Looking back I'm ashamed of the way I acted. I try so hard to react differently but years of watching your child flirt with death over and over tends to take a toll on a body. Can anyone say Post Traumatic Stress? It's definately an emotional rollercoaster I wouldn't wish anyone to ride.

And its times like these that I'm so thankful the doctors, residents, nurses, my family and my friends all have the compassion and patience to deal with me.

In case you haven't figured it out yet.....

Jophie and I are in the hospital and have been since Friday. We pretty much have kept him sedated because he was in so much pain. Today we've spaced out the pain meds to let him wake up a bit and to see how he feels. So far so good!

The trip to the hospital which for us is from Ohio to West Virginia went smoothly as did the visit at the doctors office. From there we went to the hospital and by the time we got him unloaded in the parking lot of the hospital he was a mess. The heat along with the way he felt was just more than he could stand.

Jophie is almost always a direct admit and his doctors always pave a nice smooth path as witnessed by us at admissions. It only took "maybe" 15 minutes then up to the peds floor we went.

It took several hours to get him settled down. I had to literally hold him up against me for almost 5 hours to keep him calm and let me tell you thats no easy feat with a spastic, non-ambulatory, 75 pound 14 year old baby! It was like wrestlin with a baby bear and can I just say......

HE WON! :0)

During the wee hours of the morning we were able to get the chest X-rays which were done in the room. Labs were drawn from his PICC line and from a vein for cultures along with all the other routine things they check. I hoovered out a good snot culture for them and a urine sample was collected just to make sure we didn't miss anything. Last but not least they hung Zosyn and Vancomycin to cover all the bases till we figured out what we were dealing with.

As of tonight this is what we know.....

• His sodium was high but now its back to normal(Most likely due to dehydration)


• His sputum grew Strep Pneumonia and Pseudomonas


• The blood culture from his vein grew Staphylococcus epidermidis(We're hoping this is skin contaminent)


• The blood cuture from his PICC line grew nothing


• The urine was clean


• The lungs looked clear but he does in fact have Strep Pneumonia(Jophies back is so bad you can't really get a good x-ray which is really why you have to pay such close attention to those subtle symptoms he gives us)

Now we are in a holding pattern of sorts. They are running a test to determine if the Staph that grew in his blood is contaminent or if he really does have a blood infection.( I pray not) They are also running sensitivities to antibiotics to make sure the ones we are using are still sensitive and effective against the Pseudomonas plus they have to check sensitivities to the Strep Pneumonia and Blood infection as well.

If the sensitivities remain the same then we are going to keep the Zosyn and most likely add the Amikacin back on board so that darn Pseudomonas is double whammied! We are also keeping the Vancomycin until we figure out whats going on with that blood infection.

This was taken Friday at some point in the wee hours of the morning. Note the very red face and his 2 new fashion accessories.

The red face is due to a reaction from the Vancomycin. He was soooo red not to mention all the kicking and screaming. The laughter is an uncontrollable out of the ordinary type of laugh that for Jophie indicates pain. Because of the brain damage wires cross and at that moment the laughter was from pain. They had to give him IV benadryl to counteract the reaction and now he has to be pre-dosed 30 minutes prior to each dose of Vancomycin.

Now the bracelets. I just have to tell you about this new fashion trend that Cabell has recently started using and quite frankly I find it hilarious! Can you see the barcode on both bands? And what do you do with a bar code?? Yep you guessed it right. You Scan it!

Jophie has been scanned so many times in the last 3 days that I seriously think I'm hearing a beep when they scan him! EVERY SINGLE person that has anything to do with him has to scan him. I think I should request the marked down price or at the very least we should get buy one day get one free. Dontcha think??

Hopefully I will know more tomorrow on the blood infection but for now I think I deserve a shower. A much needed one at that! A little shut eye would be nice too since I've slept only 2 hours in four days.

Pray I don't fall asleep in the shower and drown. :o)

Bug Juice......

Jophie came through the procedure just fine. The actual surgery only took about 30 minutes followed by 30 minutes in recovery. They did have a hard time placing the initial IV that would deliver the sedation. He was a bit dehydrated like I expected so the veins kept blowing that is the ones you could see. I'm so thankful it only took about 18 attempts and of course Jophie is always so good and never even whimpers. It kills me to watch him suffer so but bless his heart he's just so used to all this it has become second nature to him. After recovery we went straight to the peds floor into a negative air pressure room which protects him against germs. They are so good to him! The first dose of antibiotic arrived in the room quickly and he had no adverse reactions to it! Praise God!

The nurse had the discharge papers ready in no time at all but then we did run into a little snag. Jophies Aide that was with me became deathly ill and was unable to travel home with us. We had to call her husband to come pick her up. It's about a 40 minute drive from West Virginia back into Ohio for me so needless to say it was a scary ride home. We lie him on his side on the back bench seat then use the shoulder belt around his torse/chest and use the middle belt around his hips/thighs/legs. He actually is very secure but its impossible for me to get him in or out alone. One of the nurses from the peds floor helped us down to the van and also helped me get him loaded.

As we headed home alone I became even more nervous. He still was a bit sedated and I was worried about his airway, about him getting sick and or needing suctioned, about him getting too hot and let me tell you it was hot as blazes! I do have air in the van but not dual so not much reaches him not to mention I can't see him because of the way I have to situate the wheelchair. The trip ended up being uneventful except now I had to figure out how in the world I was going to get him out of the van and into the house alone.

My cell phones battery has been on the fizzle for some time and after about 3 unsuccessful calls at the hospital the battery was showing basically dead. On the way home I kept thinking if I could just get ONE call out of it I might be able to round up someone to meet me at the house so I flipped that thing open and would you believe I had a full charge! Yep.....It's a God thing. :0) I was able to call my neighbor and also made a second call to my friend who also is Jophies nurse. They both meet me in the driveway when we got home. Between all 3 of us we were able to transfer him safely and more importantly gently as he was in considerable pain.

The first night Jophies nurse and I had a terrible time getting ahead of his pain. We just kept pushing tylenol every 4 hours trying to get him comfy. He is unable to lie on the PICC line side without severe pain and agitation which had me worried. He has had 3 previous lines placed and although they were a bit sore it has never been anything like this. Because it is in an artery they apply a 24 hour pressure dressing so by last night that needed to be removed. I was horrified to find this. No wonder the little guy couldn't lie on that side.

Sherrie(his pediatrician) had actually phoned yesterday to check on him and wanted to know what the PICC line sight looked like but, at the time I still hadn't removed it. This morning I sent an email to her with a picture attached so she could take a peek. I'm just waiting on her return call with an opinion as to whether it looks normal or not. Jophie has never bruised like that with any of his other line placements. As a matter of fact I don't recall him EVER having a bruise that bad. The only thing that concerns me would be low platelets, the hematoma and swelling near the top or possibly something I'm unaware of. So we wait and see.

The first night we were home this was about the only position he was comfy. He's happy on his left side as well but after so long even that gets sore.

One thing I find just adorable is that he and the IV pole have become best buddies! Jophie is visually impaired so he doesn't see well. The first time I pushed that thing near his bed he just started grinning and talking to it. Well not talking like you and I would but rather "Jophie talk" cooing and jabbering just like a baby would. It think we should name it and give it a hat. What do you think? LOL

3:00 a.m.

Gettin me some Bug Juice and talkin to my new buddy

FINALLY! Some relief! We finally managed to get the tylenol going round the clock and he just crashed from exhaustion.

Party Time! I think this was around 4:00 a.m.! LOL

Last night and today has been rougher on him. He's still having significant pain in that arm, some fevers and now we are beginning to see some of the side effects of this antibiotic. It always seems to get a bit worse before it gets better. No worries though! We're in it for the long haul! :0)

For now we continue to pray, enjoy his smiles and for heavens sake don't forget.

"HANG THAT BUG JUICE!" LOL

Thank you all for your continued prayers.

Walking in his SONshine

5 hours......

I've just spent the last two hours getting things ready for tomorrow. Jophie has so many things that have to travel with him just for survival that even to say the preparation is a "huge ordeal" would be an understatement.

I woke up sick to my stomach this morning and stayed that way till late afternoon. I just can't shake this feeling. At the moment the sick feeling is gone but now is replaced by anxiety. I keep reminding myself that God is in complete control of this situation but even still....

I keep repeating this over and over. I know its true I just need to claim it!

Matthew 6:34
Take therefore no thought for the morrow: for the morrow shall take thought for the things of itself. Sufficient unto the day is the evil thereof.

Oh how I wish this were Monday night with all this behind us!

I'm taking my laptop and if I'm able I will update after the procedure then hopefully again once we get up on the peds floor and settled in a room.

Specific prayer requests again:
1. The radiologist will be able to place the line with no complications and very few attempts.
2. Jophie will have no breathing or airway problems during the procedure.
3. Jophie will begin breathing on his own without complications once the sedation drugs are stopped.
4. Jophie will not have any seizures during or after the procedure.
5. Jophie will not get dehydrated. (We have to hold 2 meals which is a huge deal when your only tube fed).
6. Jophie's zofran will keep him from being nauseous/gagging/wretching(He can't throw up so this is a big deal).
7. Jophie will not feel any pain during the procedure and minimal after. (There will be a couple stitches plus it is invasive).
8. Jophie will not be allergic to this antibiotic.
9. The antibiotic will knock this down to an inactive state.
10. Jophie does not contract any new infections from this procedure.
11. Safe travel there and back. This is a big deal because Jophie no longer can ride locked down in his wheelchair because it doesn't fit in the van right and no normal person can afford one of those crazy handicapped accessable vans?)It's nuts!

Ok I need to scoot and make sure I have everything packed and in order because I only have 5 more hours.

Walking in his SONshine and looking upward

We have a plan.......

I always "have a plan"

I like plans. I like schedules. In fact I NEED them. It gives me some perception of control even though I actually have very little control in this very chaotic and upredictable world of Jophie. It consumes me.....in a good way.

I love being surrounded by everything him. His smell. His smiles. His blankies. His snuggles and yes I even love his Mic-key button, nasal canula and every piece of medical anything thats attached to or poking out of him because it IS a part of him. It's what makes him "JOPHIE" and to have those things attached is to have him "here"..... Alive and well

Sherrie (Jophies pediatrician and our dear friend) called on Thursday.
The results are in. His cultures did in fact grow Pseudomonas. No secret there. Thats one of many he is colonized with however that bad boy is evil and rears its ugly head often. It was active about a year ago and sensitive to Cipro which he has been on for 30 days now. This time its resistent to the Cipro and sensitive to 4 different antibiotics. The very same antibiotics it was sensitive to three years ago which tells me two things.

One: It must be the same strain of Pseudomonas that he contracted three years ago which by the way was his FIRST ever encounter with this evil bug. It's a dangerous and very resistant "super bug" and during the few years that I worked in the medical field it was always known to us as a "death sentence"
I became deathly ill when they told me because "I knew"

Two: Since it was sensitive to Cipro a year ago but not three years ago he either is colonized with "2 diff. strains of pseudomonas" OR it has mutated and is "now" resistant to the Cipro.

And its times like these that I wish I knew less. Ah yes Ignorance is sooo bliss!

After Sherrie and I spoke for a bit discussing and comparing notes she decided that the best course of action would be to have a PICC line placed and run the antibiotic that was the most sensitive.

There are four that are testing sensitive at this time.
1. Gentamicin (He can take this one but he did have some sensitivies to it three years ago)
2. Tobramycin (He had an allergic reaction to this one three years ago)
3. Azactam (This one saved his life but at the same time almost killed him)
4. Amikacin (He has never taken this one BUT it is testing as the most sensitive)

I KNEW that three years ago we had nearly exhausted every antibiotic just trying to knock that bug down to an inactive state so imagine my fear when I hear that three of the four antibiotics were ones we had already tried AND ones he had problems with.

Right now I am more thankful than any mommy could be because of the four there is ONLY ONE on that list that we have not tried AND it is the one that is the MOST sensitive meaning it would be the best one to use.

YES.....It's a God-thing :0)

"THE PLAN" was to go up early this morning and have the PICC placed outpatient however I found a few kinks in "their plan" and you know this must be "My Plan" lest I lose my sense of control. :0)

The "New Plan" will be to arrive at the hospital very early Monday morning(7:30 a.m.) which means we have to leave no later than 6:00 a.m. which also means I will not be able to sleep because I don't finish up with his stuff till around 5:00 a.m. which is when I usually hit the sack however, I'll need to hit the shower at that time. Phew! Tired yet?? But hey.....I'm "in control" :0)

After we arrive we are to go to radiology to have the PICC put in. For the record he has ALWAYS had his PICC and Central lines placed by one of the PICU docs with sedation either on the peds floor or in the PICU. Needless to say I'm a bit anxious. Jophie is a VERY hard stick on a good day and an even harder child to thread a PICC or Central line through to the heart not to mention how dangerous it is to use sedation on him. He always does NOT breath on his own when they begin taking away the sedation meds. It's a really scary thing to watch your child not breathing. I've witnessed it more than I care to.

Next obstacle will be the antibiotic. Once the line is placed aside from any complications we are to go on up to the ped floor and they are going to admit him onto the floor so they can run the first dose to make sure he isn't allergic to it and YES, I'm scared about that for more than one obvious reason.

Once we get all this behind us we're coming home and I'll maintain and run his antibiotics from here. I've ran PICC and Central lines at home for him for up to 6 months at a time so this is the easy part. We just need to get to this point.

Specific prayer requests would be:
1. The radiologist will be able to place the line with no complications and very few attempts.
2. Jophie will have no breathing or airway problems during the procedure.
3. Jophie will begin breathing on his own without complications once the sedation drugs are stopped.
4. Jophie will not have any seizures during or after the procedure.
5. Jophie will not get dehydrated. (We have to hold 2 meals which is a huge deal when your only tube fed).
6. Jophie's zofran will keep him from being nauseous/gagging/wretching(He can't throw up so this is a big deal).
7. Jophie will not feel any pain during the procedure and minimal after. (There will be a couple stitches plus it is invasive).
8. Jophie will not be allergic to this antibiotic.
9. The antibiotic will knock this down to an inactive state.
10. Jophie does not contract any new infections from this procedure.
11. Safe travel there and back. This is a big deal because Jophie no longer can ride locked down in his wheelchair because it doesn't fit in the van right and no normal person can afford one of those crazy handicapped accessable vans?)It's nuts!

Ok off to finish up Jophies food and meds and hopefully hit the sack soon! The nurse called off sick today so we're wingin it alone! :0)

Thank you all for your kind words and your continued prayers for Jophie.
We do appreciate and covet them.

Walking in his SONshine