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