My "Wee E" and my Computer

My boy is home. He’s still very ill, but home nonetheless. RSV hangs on like I have never seen and I suppose it hangs on even worse in a wee one with Down syndrome. I do not wish a combination of RSV/pneumonia and Influenza on the worst of my enemies. The stuff is horrid. Heck, the illnesses are horrid alone, but unite all three and look out! Isaac, of course, is back to his Isaac self. He kicked the illnesses right smack dab in the bottom. The kid is a monster and I love it!

Speaking of illness and infection, my computer is at the doctor getting a dose of something today as well. I’m on Jeff’s system, wondering just how his is so much faster than mine; wondering why he has the new laptop and I use the antiquated one. We bought his as a back-up, and he has taken it over. Transferring my business files, my Outlook email and all of my stuff in general would prove to be a nightmare, so the old hooter is at the shop getting an overhaul. I sure do hope that the computer docs can do their job. We all know how I feel about docs in general lately. I suppose par for the course if the thing is beyond refurbishment.

Back to my itinerary for the day. Perhaps I’ll vacuum instead of trying to work on Jeff’s computer sans my personal stuff. UGH!

The Elliot report

Outpatient observation has now been upgraded to in-patient status. RSV, Influenza A and yep, another pneumonia. Jeff resides at the hospital; I reside in a robe and jammies at home with Isaac who (bless his heart) is still sleeping at 9 a.m.

They did remove IV fluid. Goal: get him to ingest a wee bit of fluid. Diapers are wet – of course. Funny, the on-call kept saying, “But, Michelle, he has wet diapers…”

Well, sure, you have pumped enough fluid in him to water our lawn on a corner lot! No kidney in the world is gonna hold THAT much fluid!

Temp is stable; sats are up and down. My inclination, regardless of how horrid his cough sounds and how often they whip out that nasty suction machine, that they WILL send him home today.

Again, goal is to drink. I’ll be fine, won’t I, if I can get him to drink…consistently drink? Prayers for a tired momma who is going to be in jammies all day, please? And wow, is it really Monday tomorrow!? UGH!

Elliot's most recent set-back...

Elliot now has RSV. We are back in-house at the hospital (UNBELIEVEABLE...we made it) as Elliot needs IV fluid. As in typical Elliot form, he is refusing to take any fluid. He feels horrible. Pneumonia seems to be dissipating, but now this which could in turn cause yes another pneumonia. I am literally in awe. Finally, one of our boys is where he needs to be. Isaac received his second Rocefrin shot this afternoon and will receive another tomorrow.

We’re tuned into CNN. Someone tell me why President Obama used such inappropriate words with regard to the Special Olympics. I mean. COME ON?!

I don't know what else could happen?

Isaac has pneumonia. He is horribly ill.

His respiration increased to over 60 breaths per minute. His temperature skyrocketed to 105 again. His saturation dropped to around 80. But, did they admit him? No. WHAT DOES IT TAKE TO HOSPITALIZE A CHILD?

I called the new pedi who saw him in the morning before his temp hit the roof. Of course, his sats were normal in-house and his fever was low grade. He was sick in her office but not “ill.” She also diagnosed with a bilateral ear infection. She indicated that after the antibiotics kicked in, we would see an improvement. He became worse, so I called our current PCP and Isaac was seen by their on-call doctor and he immediately said “pneumonia.” He received an antibiotic shot of Rocefrin.

We have Elliot’s follow-up appointment today with the current PCP – do note that the new PCP does not want to treat Elliot until after his surgery. I understand, but not completely. Loose ends and all.

To my dismay, the practice administrator with our current PCP called yesterday and noted that they will no longer see us. I, apparently, cannot openly disagree with the hospitalist’s behavior. I, apparently, cannot say it is NOT okay to discharge a child with RSV from the ER without actually seeing him. She told the ER physician over the phone that, based upon his behavior in the ER, that Isaac could go home; after all, he did take a few sips of electrolyte fluid. And now, he has pneumonia, and is MUCH worse than Elliot ever was with his.

We’ll have the follow-up for Elliot’s pneumonia and 30 days if we “need” anything, but I am afraid that Elliot will not be well in that period and I’ll have no one to clear him for his surgery that needs to take place ASAP. He needs a pre-op. Of course, I have excellent relationships with the physicians at Children’s. They phone me personally to check on Elliot. But, they reside in another city. Do I find a PCP in Omaha and say to heck with the situation here locally? Do I drive 60 miles when Isaac or Nora comes down with the flu or needs to be seen for a well-child check?

I have told a few people about the situation and they are all appalled. I’m not a bad person. I merely spoke my mind with regard to our children’s care. I disagreed with a practice physician’s decisions. Do I not have the right to do so? Do I not have the right to question? What do I have the right to do? People say, “Oh, you are such a good advocate.” But look where it has gotten me. I do not have a doctor for Elliot until after his surgery. My son who needs immediate gallbladder removal, a liver biopsy…you know the story, does not have a PCP until after his body is cut into again.

I just want to go away…away to a place where physicians care for their patients…a place where the doctor-patient relationship is still paramount. Does anyone know where I can go, besides back to the side of my children’s cribs to cry?

On a side note, if indeed Isaac is not beginning to improve by late in the day, I WILL make the silly 60 mile trip. And I do believe that a children’s hospital will admit. And if they don’t, well…then I am just illogical, insane, hell, downright mad. It has to be me that is crazy, right? Not them.

Update

Isaac has RSV. The hospitalist with our current pedi practice refused to admit him. The ER doc’s hands were tied as his chest x-ray is clear and he decided to ingest a bit of fluid while in-house at the ER locally. He turned a lovely shade of blue at home this morning and his temp was 105. Temp in-house at the ER at 101.

So, here we sit at home, and Elliot is at risk. My hands are still tied as all of our children's records have yet to be transferred to the new pedi group. Just phoned them to discuss protocol. I'm trying to get him admitted. I have NEVER been angrier. Never.

Angry, scared, and just plain fed up. My heart is filled with hatred and I don’t like this feeling.

Sickness hits again

Isaac’s temp spiked last night. He topped off at 104. Petrified? Yep! We were never told if Elliot’s pneumonia was bacterial or viral. I asked for the blood culture results. Think they gave them to me? I’m gambling that it was viral, and had that hospitalist not acted so inappropriately, we would not be dealing with yet another very sick child.

His breathing is rapid; I can hear the wispy, raspy sounds when I place my ear on his chest; he refuses his bottles and food. Seems very familiar. In fact, identical to Elliot’s symptoms, yet Elliot went down hill all too fast.

We’ll head to the pediatrician’s soon and check O2 saturation, etc. However, I will NOT go to our normal pedi. I have all three kids on the books with a new group. As I keep saying, I have had enough of ineffectual behavior. If we are admitted, I so hope we run into the hospitalist. I have words...many words for her.

Prayers for my "pigpie" – aka Isaac?

I think I'm done...

Of course, the thought has crossed my mind, but I think it is time to take a trip to Mayo in Rochester. A dear friend from high school sent me a note in response to a request. Her father is the best upper GI doc here in the city. Although his practice does not see pediatric patients, I asked for her father’s opinion regarding the complexity of Elliot’s medical status.

“Take him to Mayo.”

He indicated that the physicians at Children’s should oblige. We’ll see. I won't bother asking for the referral from our PCP locally. They will laugh at me and I have had enough of that.

But as things become more and more mysterious, I think we need to see the best of the best. I cannot deal with anymore behavior that I consider to be worse than inept.

Anyone been? Tips for a scared momma?

Bitter momma

Yea, pneumonia bites. And, it bites even worse when it hits prior to a major (and quite compulsory) surgery that was to be completed Friday. Oh, and what bites even more is a hospitalist who sends your boy home from the hospital after two days of IV antibiotic, not eating sufficiently, and generally, still sicker than sick.

Antibiotic aspiration further exasperating pneumonia? Well, apparently not in her book.

“You’ll get him to take them, Michelle.”

“Come on; you can do it.”

My blood is boiling. The charge nurse indicated that he was not ready to be discharged. The charge nurse talked to the hospitalist. The charge nurse, bless her heart, got no where.

The pedi practice that employs said hospitalist indicated that it was okay for him to be discharged as well. Sure, my child who eats nothing and still primarily refuses his bottle because he cannot breathe sufficiently, hence cannot suck, can easily take compounded antibiotic through a flipping syringe.

“Just bring him into clinic today.”

“We’ll check him over.”

Damn it – it is 16 degrees and my child has a horrible pneumonia. Makes sense to take him out into the cold, hoist both boys into their double stroller seats and make our way into the clinic. Makes a lot of sense, don’t you think?

Hospitalist frequents all hospitals in town, so I cannot simply take him in to another ER. If I have to readmit, I will head to Children’s in Omaha (with all three of my children). That makes sense too, don’t you think?

Oh, and dear hospitalist discharged Isaac at birth sans the results from a thyroid panel. She indicated that I needed to learn how to take care of a “normal” child again. Needless to say, we saw a pediatric endocrinologist for over 8 months due to Isaac’s severe thyroid problems. Smart lady!

So, here we sit...at home, stressed out beyond belief. No surgery Friday, obviously. I should have asked Ms. Hospitalist if she’d clear him for surgery as well. Makes sense…

And so the song goes…

Have you ever been driving along, or simply sitting in your vehicle, and a song’s lyrics just smack you? I have heard the song over and over again, and, like the masses, I do love Snow Patrol. Truly, though, I have never really “heard” one particular song’s lexis.

I am petrified about next Friday’s procedures. I know the surgeon is stellar. And really, they have to be rock stars in their field or they will not touch my son with a knife. I simply say, “No,” and find someone else. It has to be done that way. He’s just too fragile. Bedside manner is no longer relevant. Congeniality is not a prerequisite, but this particular surgeon excels in that particular area as well. Rare, but true. I’ve learned how to interact with these personality types. They don’t have to be polite (and generally, they are not), but I will not tolerate ineptness (and it has run quite rampant when it comes to our son’s care).

This time though, we’re in good hands and lucked out as dear pediatric surgeon is really quite a doll. But still, organ removal? Organ removal in a two and a half year-old child who has lived through an 8-week premature birth, severe thyroid problems, a pretty risky spinal surgery, has a Dandy Walker variant, has venous hypertension, a compromised airway, and merely weighs in at a not-so-hefty 21 pounds. Nuf said!

So, the song comes on…

Open Your Eyes

“All this feels strange and untrue
And I won’t waste a minute without you
My bones ache my skin feels cold
And I’m getting so tired and so old
The anger swells in my guts
And I won’t feel these slices and cuts
I want so much to open your eyes
Cause I need you to look into mine
Tell me that you’ll open your eyes
Get up get out get away from these liars
Cause they don’t get your soul and your fire
Cause they don’t see what I see in you
Take my hand knot your fingers through mine
And we’ll walk from this dark room for the last time
Every minute from this minute now
We can do what we like anywhere
I want so much to open your eyes
Cause I need you to look into mine…”

Yep, hit me like a ton of bricks as I sat sobbing in the damned drive through line (Indeed; I’m too tired to cook). Pulling up, the poor lad looks at me in horror.

“Are you alright, miss?”

“Um, sure…just a bad day,” I say.

Needless to say, I could not ingest the stupid roast beef sandwich and fries. Just had a glass of red wine and went to bed.

I want it to be over…

ALL

Over!