Thursday, August 26, 2010

Well Burst my big fat Normal Bubble....

I can't believe Lily has been in school for 2 whole weeks. It makes no sense because my house is still a mess, my laundry is still unfolded and I definitely don't feel rested. Maybe next week will be the week.

The first week of school was a riot. Lily was excited every day and we established a routine, which is paramount for the lil monkey. We get up, get dressed, eat breakfast, brush hair and teeth and walk to school. In that order. Every day.  Since Phil is off this week, he's been trying to give me a break and get the kids off to school. Let's see, today is Thursday. He got up this morning, instructed me not to wake up and locked the door so the lil ones couldn't wake me.  About 20 minutes later I hear whimpering outside my door.  "mom!" comes a soft whisper in between whimpers. It's Lily. I am guessing dad broke routine. She does not do well with broken routine. I was hoping that school would ease her into accepting change.  I open the door to a tear streaked face and a great big afro. Oh Lily. " Dad did my hair wrong" another tear trickles down. She was instructed not to bother me, so she knows what will happen if she is discovered- but to her, the norm is worth it.  I spray some Leave in conditioner in and scrunch it back down.  She grins and skips off.  I meet her downstairs. I instruct Phil that once the hair is combed out, it needs to be scrunched down.  He shakes his head, I can do that! Unfortunately Lily's communication breaks down when she needs it the most.

The first day of school was uneventful. I went in early to give her teacher a little light reading about adrenal insufficiency and what to do in an emergency. I had an identical packet for the health room with a form that was signed to allow Lily to keep her emergency meds at school. I drop both off and let both know I don't expect any problems, these are just in case of an emergency.   I get home to a call from the Public health nurse who informs me that Lily's meds can't be kept at school because they are not on the formulary. I of course, in the least sarcastic tone I can muster- ask what we need to do to get them on the formulary because she needs the meds in case of an emergency. She suggested calling Lily's doctor and confirming if she actually needs them at school and get back to her. Seriously. I am pretty sure Lily's doctor thinks she needs them at school because she filled out the DOE HRS form 36 which requests the storage and administration of meds at school and pretty clearly stated the need. But I make the call. I speak with a nurse I trust at Tripler and she emphasizes the need for the meds at school. She enlightens me to some of the red tape I will have to deal with and gives me a couple buzz words which will be the scissors needed to cut through said tape.  I call the PH nurse back. She is a very nice woman, but I definitely get the feel that the first response is always to deflect then consider. She gives me the number of a doctor on the board who will have to approve the change in formulary and requests my doctor speak with her. I immediately make the call to the board doctor and leave the message with all pertinent information.  The next day is Friday, I want this ball rolling fast enough to get through the weekend- otherwise it will get lost.

My phone beeps- it's a reminder for an appointment with Lily's endocrinologist the next day. Talk about impeccable timing. As I was reading the fine print on the form 36, I stumble across the need for all meds to be marked with FOR SCHOOL USE. Oops. That can be fixed.  I then put the phone down and it rings, it's the school health aid, they cannot store the meds and I need to pick them up. I tell them I will get them after school. I spend the rest of the afternoon assembling another packet of information on adrenal insufficiency, including all the details of why it is necessary to have meds on hand. I'm not sure who will need this packet, but I am pretty sure it will be needed. 

I pick Lily up and she is beaming. She loves school and her teacher and her friends. I make sure her teacher knows there will be no meds at school until we figure the paperwork out and to call me if she has any concerns about Lily's health. I don't expect any problems and I want her to be treated normal, but in case of an emergency she has special needs. Lily's teacher is mild mannered and experienced and the perfect lady for the job.

The next day I let the kids know that I will pick them up directly from school to go to Lily's doctor's appointment. I am catching up with laundry when the phone rings. My heart sinks, it's the school number. "Hi Mrs. Mallory, we have Lily here in the healthroom."  Oh god, murphy's law. "It seems that one of Lily's classmates accidentally stabbed her in the hand with a pencil, it's a little deep but I cleaned it out. She would like to go back to class. "  Ok, great. I see how this year is going to go. I might have flipped out. I might have panicked, I might have demanded to know what kind of child stabs another child with a pencil, but instead I said- Ok send her back to class. My first thought was- karma. A week prior, Lily was practicing writing her name and Bella leaned over to see. Lily went to push her away and managed to jab Bella in the face with her pencil. I spent 30 minutes cleaning the wound.  At least Lily's was on her hand. When I called her dad to let him know how her 2nd day of school was going, he said- Karma. Later when Lily showed our neighbor, who was consulted in the face wound cleaning adequacy- she too said it- karma. I would have to say, I have not seen Lily swinging aorund a pencil since then. She also tends to favor crayons and markers these days too.

After a few more days of back and forth about meds, the PH nurse finally got the approval for the pills to be kept at school. Apparently Lily's doctor was a very nice lady who was adamant that Lily have meds accessible at school- duh. The biggest thing was that Lily's doctor was also adamant that an emergency injection also be kept at school. This was a problem for the school  because there is no one at the school qualified or willing to give the shot if necessary. So now we had to have a formal meeting to discuss the emergency procedures and options. The reccommended option was to put her on a 504 plan which would label her as being disabled- despite assurances that no labelling would officially occur- sha ok- so that she could have an injection at school. So much for normal.

Day 3 at school, I get another call, from the health aide. I don't think my nerves can handle this. "Hi Mrs. Mallory, we have Lily here in the healthroom."  Before I can stop it from escaping "what happened?"  "Oh it's not bad, her slipper broke and we don't have and spares."  Ok I'll be right there. I grab the first pair of shoes I see and Bella and I are off to deliver. This is one of many reasons I wanted to be close to their school. The next day we have a parent meeting, the day after that we have Lily's emergency procedure meeting. If I had any doubts about them knowing who I was on campus, they are gone.  The meeting went well. As Phil put it- it's not a big deal, the injection- tell em to just watch Pulp Fiction. And yet I find that highly amusing.  Darn it I forgot to put the purple sharpie in her emergency kit.  Anyhow. They agreed to keep the shot at school, even though they don't have anyone to administer it and they will call 911 in any situation they can not get a hold of me or Phil. It's not ideal, but the bases are covered and all necessary parties are aware of her condition and prepared to call 911 if there is any question. At least my packet came in handy. It seems to make more sense to have a nurse on hand, but that is not the world we live in. That would require a 504 plan and they think that's not the best fit option. I could throw a fit and demand they hire a nurse, but that would really pop Lily's normal bubble- so we are going with the hopes that her guardian angels are working overtime and we won't have any problems. SO far she is unaware of any of these shenanigans, which after all makes me successful as a parent at least in this moment. And on another positive side- I get bumped up to automatic chaperone for any of her class field trips. It's official- they put it on the form and everything.

Thursday, August 5, 2010

Port Removal

Almost 2 years ago, with her second surgery, Lily received a Port a Cath for her chemo treatments and bloodwork.  The accessing of said port reduced many of us to tears on multiple occasions. Several occasions involved kicking. At the time I remembered telling Florence that by the time we get this accessing thing down- it would be time for the port to come out. She said, that's not such a bad thing. And here we are.

The removal was set for Friday, but Phil got a call yesterday from Doctor Edwards with a proposition- if we could come in today(Thursday) the procedure could be done in the pediatric sedation center treatment room and spare us the 3-4 hour general surgery admissions process. Sold- I said. 

So not only did we not have to get up at O dark thirty- the whole process was streamlined, which I have acquired a great, great appreciation for. I decided not to tell Lily about the schedule change until this morning, since she's shown quite a bit of trepidation about the whole event. Who can blame her? Just about everything to do with the darn thing involved some sort of owie. So last night after she was in bed, I let Phillip and Kiera know we were leaving early in the morning, Lily and I to the hospital- them to Monica's house for waffles and then to school. Bright and early this morning, I was fresh out of the shower when Lily meanders in sleepily demanding to know where her father is. I explain he is at work and take a deep breath for her panic when I tell her we have to go to the hospital today. She beats me to the punch,

"But daddy has to take me to get my port out, he can't be at work. " Hmmm. Maybe she has her days confused. I explain that the doctor called yesterday and we have to go in early- but the good news is that daddy will be home tomorrow and they can do something fun. That appeases her and as she is leaving, Bella comes in chatting on my phone. She is explaining to whoever is on the other line that Lily has to get her port out and she and Phillip and Kiera are going to Monica's for waffles.  I wonder who spilled the beans as Kiera- my little soicalite wanders in, completely dressed- ready to go. I think I have an idea of where the legumes got their nudge. 

We arrive to the sedation center and Lily is nervous. I don't know if it's the extra hydrocortisone she required to deal with the stress of surgery or just jitters but she is acting goofy. Wendy- one of our favorite child life specialists is entertaining her while I complete the paperwork. Within the hour, she is prepped and being wheeled into the treatment room.

The procedure was quick and Lily's wake up was a little rocky, but an improvement. Dr. Edwards let us keep Lily's port for show and tell.  Lily was generally pissed off that it was removed and disagreed with the usage of a see through bandaid(dermabond). She demanded her old skin back. A call to dad at work improved her disposition and soon we got to leave. As always, Lily got to pick the lunch- this time she surprised me with Subway- I thought for sure we would be having panda bear.  As a treat for this monumental occasion, she got to pick a treat from the shoppette and she found a great necklace- a dolphin jumping through a lei.

As always, I am moved by the toughness and resilience of kids. The child will spend hours refusing to wear pants and within an hour of a surgical procedure be skipping down the hall in wedge heels. That wardrobe choice was completely missed by me this morning and I am grateful no ankles were injured in today's production. All in all, it feels a bit strange but really good that this little piece of plastic is no longer a part of my child.  We're not sure yet if we are going to frame it or bury it under the tree in the back yard though- in any case it will definitely have to wait until after her first show and tell in Kindergarten!

Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)