The Good & the Bad

 

The good thing about going to Madigan since Jeremy was four months old is we know most of the surgical services staff. Therefore when we arrived at 7:15 AM they got Jeremy right back & into a bed. He crashed right away since he woke up when I did around 5:45AM. As we waited I went over all the paperwork one more time. Had them place the RED ALLERGY alert bracelet on Jeremy so they remembered to take off his EKG Leds ASAP when he woke up. Then we waited about an hour before they wheeled him back fo his eye surgery.

 

They placed the purple X over the right eye so they didn't mess with the wrong eye- good thing they did.

 

He was all smiles & high fives as they wheeled him away. The other people in the waiting area could hardly believe how at ease he & I where. One mom was in tears while waiting & asked how I could be so calm? I gave a brief little history of all the surgeries Jeremy has had & the fact that if I get upset it does him no good or the doctors. Staying calm is much better for everyone.

Well off he went & I headed to the closest coffee stand for a much needed caramel sauce latte with a bagel- I was starving by then.  Headed to the waiting area in time to catch a lady yelling at a man who was talking on his cell phone. Apparently she didn't want to hear his whole conversation & he told her she could move-WOW! It took around an hour forty-five minutes before the doctor came out to talk with me & take me to recovery. They where able to adjust the tube that Jeremy had placed behind his right eye at four months of age. It helps drain the fluid behind his eye to keep his pressure low. It immediately dropped his eye pressure down to 24/25 which was still a little higher then they had wanted but better then 40 that it was last week. The doctor let me know that for now it's as good as it is going to get ever. That we will continue to use 3 different drops two times a day forever. That his vision is still considered legally blind in that eye- but he can see.That over the years it may get even worse where he has no vision at all but they have no idea when that will happen. That was that & at least for now his pressure is lowered & he can keep a little vision in that eye.

When I got to him I went to rub his back & noticed right away his EKG Leds where still on, GRRRRR!!! I start yanking them off only to have some nurse who doesn't know us flip out. I calmy tell her to call the doctor now! She does then comes back over to see what the fuss was all about as Jeremy lays clawing at his chest & crying very loudly. Let me show you what the problem is -  I say in my nice but stern mommy voice.

My little guy had a severe allergic reaction to the sticky stuff on the back of the EKG Leds just like his chart said he would & the BRIGHT RED bracelet he was wearing warned about. But NOOOO, they still left the dang leds on too long. That led to Jeremy needing a benedryl dose in his IV & a very strong sedative to keep him from scratching at the sites.Poor little guy looks like someone burned him on purpose with some round blunt object. Finally a nurse who knows us comes over & has the other new lady leave- thank goodness. She get's Jeremy's IV out, let's me get him dressed. Then she wakes him up so we can leave.When she got some questions about me carrying Jeremy out instead of a wheel chair- well Jeremy yelled at the other nurse so loud- yep they let us walk right out of recovery!

I am so grateful for Jeremy's medical team, but sometimes I want to scream when they mess up the small things. Especially when I go over it & over it before he leaves my site. Thankfully he was fine & wanting to eat. I went & picked up some Pizza Hut and we headed home.He is laying on the couch watching Batman now with Banyan. He is really groggy from all the extra medication he would not have needed had they simply paid attention. But I am very glad his eye pressure is down for now & we where promised no more surgery for at least 6 months!! That may be a new record for us!  I can't say we will miss the early mornings at the hospital. We plan on enjoying this brief vacation time as much as possible.

So there you have it folks the good, the bad, & the ugly......ugggg

Fall Colors

Jeremy outside Madigan Hospital after an appointment today. We walked around to see all the gorgeous trees. This is truly my favorite Season .

IV's + Cranky Nurse + Air Bubbles = INSANITY

I really should have known that yesterday was going to turn into a medical circus from the moment Jeremy refused to let them put in his IV for his laser surgery. He hasn't done that in almost four years! He is usually the happiest ,go lucky patient in the world. Not yesterday - no sir! He wasn't having anything nice to say to the anesthesiologist at all! After I finally talked him in to holding still he let them stick the IV into his hand but screamed until the gas knocked him out!

The surgery went well & he woke up screaming for a few minutes then fell back to sleep. The doctors wheeled him down to recovery & we where met by an older nurse. As soon as she started talking to me & asking questions I got a feeling in my stomach she was not the best nurse for us today. But unfortunately at Madigan you can't just switch nurses with out cause so I just let Jeremy sleep for awhile & went with the flow. I got to catch up with a couple of nurses & doctors that know us as we are "frequent flyers" so that was nice. Then they asked me to try & gently wake Jeremy up so we could get discharged if it went well. I was able to wake him up with only a few tears & the request to go home. He then noticed his IV was still in and very politely asked the nurse "can you please let mom take this out?". I smiled & said "I think we should let your nurse take the IV out so it won't hurt. Mom doesn't know how to take IV's out.". Well that cranky old nurse rolled her eyes, sighed & said loud enough for Jeremy to hear " I don't know why you parents tell the kids we can take the IV's out with out it hurting! Now when it hurts he is going to be mad!."  I was so SHOCKED I just stared for maybe thirty seconds, but just long enough for Jeremy to let her know what he thought. He looks at her and screams at the top of his lungs " NO,NO, NO, you are MEAN!! I DON'T Like You!!"  I was trying not to laugh but was thinking GO JEREMY!! Immediately this really nice Captain named Ken stepped in as she walked away murming under her breath. He asked Jeremy what was wrong? Then he preceded to go out of his way to take Jeremy's IV out very slowly & wheel us all the way out the door to our car. Turns out Nurse Ken was the guy in charge that day, so I hope he let cranky nurse have it when he got back to the recovery room!

Off we drive away home thinking YAY we are done for the day! I promised Jeremy cartoons all day & 7-up. We get home relax & wait for his brothers to get home from school. Everyone arrives home all seems well for the moment. We make Jacob's birthday dinner & right in the middle of eating Jeremy sits straight up on the couch. He starts crying big alligator tears & saying that his lungs hurt! I go check & when I touch his chest he howls. I call the clinic & they are closing because it's 5:30PM so they refer us to the ER . I call & they say we can either wait to see if it get's worse or drive back to get him looked at now. I chose to go back because Jeremy rarely complains unless he is really in pain. I know this will most likely mean a long ER visit so I grab snacks for Jeremy, his blanket, stuffed wolf, & a new book for me. Change him into his Pj's & off we go to Madigan, again.

We arrive & get triaged pretty fast due to Jeremy's swollen face & earlier surgery. As soon as they realize not only is he having chest pain he has Sturge-Weber we are in super fast! The hear a crinkly popping noise when they listen to his lungs so we get to go get a chest X-ray. They see two small spots near his heart & on his neck. So now we get an EKG- something new for Jeremy. It doesn't look right so we are off to get a contrast Cat Scan.Well this may seem fast but it's not. By the time we got the Cat scan it was 9:00PM. We then had to wait for every doctor in the ER to come feel the "bubbles" in Jeremy's neck before they decide he needs to be admitted over night for observation. The cat scan showed bubbles around his heart of pockets of air. They believe it is from the coughing he did when he was waking up from the anesthesia after surgery. He also had one bubble of air in his throat that's apparently pretty rare for a child his age. Then you throw in that not many doctors have ever seen a patient with Sturge- Weber & it was full on INSANITY until 1:30 AM.

Jeremy & I finally got to the fourth floor & asleep around 1:30 Am only to wake up at 5:15AM. He was starving poor guy hadn't eaten much at all in almost twenty four hours.We ordered some breakfast & the madness ensued again. When I said one medical student could take a feel it turned into twenty-five doctors at one point in Jeremy's room. We had ENT, Surgery, & Pediatrics. Jeremy had finally had enough & was still waiting on his food.. He rolled over & refused to cooperate anymore. I suggested everyone wait until he ate & they all cleared out. His food arrived in the shape of Mickey Mouse pancakes, sausage,banana, & chocolate milk. He was so hungry I had to beg for a bite of his banana! Have I mentioned they had NO COFFEE anywhere until I asked for some. How nuts is that!!

He finally settled down & a good friend brought me starbucks & some snacks. She visited with us & watched Jeremy get another EKG. Another friend brought him up a new toy which provided some much needed entertainment at this point. We finally get to talk to all his doctors & agree on a care plan. We got released & are finally home. I am so sleep deprived my head hurts. Jeremy changed out of his Pj's & is watching a movie on the couch. We have two more appointments tomorrow & one new cardiology appointment in a week. All I want to do is curl up in my bed & sleep for a whole day straight. Luckily only the older boys will be home shortly from school. Jacob lucked out into a free afternoon of pizza & fun at Charlie Safari with his friend who is moving on Monday. Thank goodness for that, because I have no energy at all for all of his energy that I know would walk through the door. I am so grateful for all the friends who helped with the kids, bringing coffee, toys, & offering to cook dinner. We really are blessed to have a wonderful support system. Thank goodness- Paul was able to be here & get home to the boys last night. I hope it is a slow, boring , uneventful rest of the week- so please pray for that. I have no energy or brain cells left after the past three weeks to do one more emergency at this point. Here is a quick picture of Jeremy enjoying his Mickey pancakes this morning. I am off to take a nap.

WOW- it's a Calgon day!

I wasn't going to post today but WHAT A DAY!! Got up at 5:15AM poured my coffee & the crazy ensued from there. I thought we where right on time with five minutes to spare for Jeremy's pre-op , nope I had it written down as 9:30 they had it in the computer as 9:05,uggg. Luckily they know us & asked if we could wait a few minutes they could squeeze us in, so we did. We had already ran by the Madigan pharmacy to grab a number as they are so slow in there I knew we would be lucky if they where anywhere near our number when we where done at pre-op. I was right as usual- we got down to the pharmacy thirty-five minutes after we had taken a number & still waited for fifty five more minutes to get called. Thank goodness they had a Disney movie on & Jeremy was cooperating. We get up to the counter & are told our neurologist has not put in his prescription??? WHAT say again, she never forgets??? They tell me I need to go back to the neurology clinic to get her to put the prescription in the computer & come back, UGGGG!! was NOT what I was saying in my head after already waiting almost an hour!

Jeremy goes along very nicely thank goodness back to neurology. There we are told our doctor has gone for the day & the only other doctor who can write the prescription is in a conference . I very nicely tell the gentlemen I have another appointment with anesthesia at 1PM, please have the prescription in the computer somehow by 3PM so I can get my son's medicine. I think he could see in my eyes that it was taking everything I had at that point not to jump over the counter & throttle him!! He took my cell number & said he would call as soon as he could with an answer. At that point it was only 11AM! Remember I had been up since 5:15AM, I was DONE!!! But I couldn't go yet. So I take Jeremy to get pizza & a root-beer as a bribe to remain calm as we head to the surgical services clinic. We are told there is a wait of two hours if we want to go run errands it would be a good idea- SERIOUSLY losing it at this point!I very quickly grab Jeremy's hand & head to the PX. Enough of this hospital at this point.

I let him look at toys & we pick out birthday party plates for Jacob's party tomorrow. We just try to relax for about forty-five minutes then head back to the car & Madigan. Luckily we get there & I get a call saying his prescription is in the computer and they gave us a fast pass for the pharmacy-hallelujah! We wait with a very strange man talking about Dr. Seuss for another hour before a nurse who recognizes us pushes Jeremy through the process. I think God knew I was done & needed a break.  Six long hours later Jeremy & I headed home.We have to go back on Monday for his laser surgery & eye exam under anesthesia . I am going to pray like crazy it goes smoothly. Not sure I can handle anymore stress at this point in my life. I am not complaining about our medical because I am so grateful to receive all the care we do for our family & Jeremy especially. But sometimes I do need to vent about it- so thank you for letting me.


Now to get ready to bake a birthday cake, pizza, movies & maybe pour a glass of wine to relax for the evening. Tomorrow is a Bowling Birthday party for Jacob & I want to enjoy the day.If I had any Calgon I would love a bubble bath as well, but I'll settle for a hot bath later instead.

** Edit**After this post while looking through the mail I found a postcard from Jacob's school. He has been chosen student of the month for June! He got picked for showing exceptional kindness to another student with out anyone asking him to help out. So all the stress floated away for a moment as I celebrated his accomplishment. It's been a rough couple of years in school for him behavior wise- so this is a HUGE deal!! Such a proud mom.