Lessons Learned

Often in life most lessons we learn are from mistakes or experiences. These lessons come from our most recent experience when our son was hit by a car while riding his bike.

Yes, he had a helmet, reflector vest, thick clothing, and forehead light. Yes, he clearly was visible. Was he riding with a buddy? No. Was he in or on the bike path? No. There was not one. He was on the shoulder. He simply was not seen until it was too late

The biggest issue for our 15 year old son is the fact that he has something called (ITP) or Chronic Refractive Thrombocytopenic Purpura and (POTS) or Postural Orthostatic Tachycardia Syndrome. ITP is a blood disorder that prevents clotting because he is lacking a healthy amount of platelets within his blood stream. You and I have 400,000 or more platelets per microliter of blood, he only has about 20,000. This is 0.05% of the normal healthy amount of platelets needed for clotting for cuts and bruises. Simply explained, POTS means if he goes from lying or sitting to standing very quickly, he is very likely to pass out.

Normally biking is a safe activity. Bike crashes are not. Bike and car crashes. As I discovered, this makes this mom have to work very hard to not freak out and lose her mind.

What are the biggest lessons learned?

When a child has grown up with a medical disorder they know about the disorder. When this same child is involved in an accident, all knowledge and ability to offer any explanation disappears with the adrenalin and the accident.

What my son was UNABLE to do:

·         Verbally give mother’s cell phone (although he could dial it)

·         Give his address

·         Give his grandparents names (we live with them)

·         Identify where his father is deployed

·         Properly identify and explain his medical disorders

·         Give the names and doses of medication

·         Describe clearly what happened

What was he ABLE to do:

·         State his name and date of birth

·         Ask to call mom

·         Follow directions

·         Remain laying until the police and EMT’s arrived

·         Follow the basic on scene neurological exam

Had I not been able to speak with the EMT’s, an office, or arrive before his transport left, he would have been taken to the local hospital without a trauma bay or the ability to assess pediatric trauma cases. Had this situation been any worse for him, my not being able to enforce the importance of his arrival in a trauma ASAP could have proved fatal due to his extremely low platelets.

Until further notice he will now carry a laminated card with him at all times that will have on one side contact information. The other side will have his diagnosis and medication/dose list. We are ordering a medic alert bracelet that will simply read, “See laminated card.”

Why see laminated card? I have learned that spelling out ITP or POTS will not fit on a bracelet, and most EMT’s do not learn about either of these conditions during training. Therefore wasted space.

Instead, use a generic saying, add the laminated card where we can spell out:

ITP-chronic blood and clotting disorder, severe low platelets

POTS-syncope/fainting disorder

Meds

********

********

EMT’s will understand both of these in just a few words. Then if they need the full diagnosis they will get that at the hospital when time is available to ask detailed questions.

Calls, Calls, and more Calls

Today began with Celidah and Zach getting records completed with the new orthodontist Dr P. Because both kids needed casts made for both upper and lower teeth, pictures, and everything when just starting this appt took a long time.

In addition to records, Zach had his upper space maintainer removed, all upper brackets removed and replaced. His brackets were replaced with torque brackets. These brackets will allow for his teeth to moved in a different position and manner than the stage 1 treatment plan offered.

Stage 1 was to move the teeth from behind the teeth. Remove his extra teeth and create room for those yet to come. This stage took nearly 2 years and he's moved to a full mouth of braces. Stage 2 will take at least 2 more years and at this point we're going to use the ortho benefits. Up to this point, all his ortho work has been paid for out of pocket. Thank you Nana and Poppy for help here.

So during the 2 1/2 hour ortho appt today, I spent that time on the phone calling to make other appts. I was able to start the dental appts. Tomorrow hopefully the office will have the rest of the of insurance verification needed to schedule those.

I was able to schedule Corbyn's hematology, my pulmonary, and Bug's ENT appts. I tried to schedule her GI appt (most important) and was told that the clinic has no referral for her. I hung up called Pulmonary and was told the same thing. Frustrated, I hung up, called the insurance and was assured that as of Jan 20th, her referrals were good, had been faxed. I called the Children's Hosp back again and this time would not take no referral, just wait for an answer.

Extremely frustrated by this point I was transferred to someone in the GI dept. Again I was informed that there was nothing that could be done without a referral. UGH!!!! At this point I got a name of a direct fax number and called TriCare back.

Somewhere along my calls I was informed that I needed to call the peds office because her GI referral was listed as "do not schedule." This call was also made today. Apparently, somewhere somehow it was confused and forgotten to be mentioned that her second referral was not duplicate but needed. Also confusing is how and why it went to the Shriner's Hosp not Oakland Children's Hosp. (no clue...)

Quick easy explanation. This child is to complex for all the local doctors, ALL specialists must be transfered to Oakland. Yes, even for the in network Dr's in Sacramento... again... must go to Oakland.

The referral is being reactivated... Note sent to the peds Dr for clarification...

Annoyed at the situation, the referral was faxed again and directly to the number given. Knowing the fax would take time to be processed I called to make SSI appts, help run a couple errands and waited.

Several hours later, I called back hoping to get her GI appt scheduled. Once again I was informed that the clinic didn't have a referral and after talking to the peds office the referral would not be available for 5-7 days.

Yes, I'll admit that I lost it again at this point. I asked who am I supposed to believe? The peds office or my insurance with whom I've been on the phone with 4 times now. I also let them know that since my daughter was born, we've been in 4 now, and that this is the 3rd Children's Hosp, and I've never had trouble like this getting her in to a clinic, and I pray she actually see's a Dr in the clinic not via emergency admission.

At this point, I've never missed nor appreciated the Dr's we had prior so much. I knew they were amazing and wonderful Dr's. I hope I let them know that, and that we really did appreciate all they did. They truly went above and beyond.

New GI Dr and Update

Well this update is not the kind of update I prefer to give but have been holding off long enough.

For a couple weeks now Bug has been really struggling now with her tummy. I think I got to excited with her "ability" to try new foods and let just keep going with the new foods. This backfired badly. All the progress we made has completely stopped as we are now having to back off nearly everything for a bit.

Nearly three weeks ago I realized that Bug was starting to have issues and slowed down on the foods but did not create the time for a clean out.

Why? Simple. we have just moved here, had not celebrated our Christmas with the kids yet nor seen her father off to Korea. I was hoping I could delay and she'd be okay.

I waited until she let me know that her tummy was hurting her after eating her normal foods and she was distended. Looking back now, waiting was the wrong choice but I wanted to enjoy the little bit of time left with her father before he deployed.

Last week on Friday, we started the clean out using magnesium citrate. This method normally produces results very quickly. The first bottle went in and nothing happened so I started a second bottle. Again, nothing. The third bottle was started and we just waited. Finally, about 3 am things started moving through but not enough. Around noon the following day I started a fourth bottle.

Normally this child is running pretty clean by this point but still was no where near cleaned out. We had gone through four 12oz bottles of magnesium citrate, seven or eight liters of Pedialyte, and she to top things off near the end of the second day she had not asked about food yet. I ran only Pedialyte for a couple more days hoping that her body would just dump the rest from her body.

Finally, near the end of day four she started asking about applesauce, and apple juice. At this point I let her have applesauce. Since the clean out we started with half strength pedialyte/formula then full strength formula at a slower rate. then we worked back up to her normal rate of 125. She has also only had applesauce and pears.

Going into the new GI, he wanted her kept on just apples, pears, and go ahead and try chicken, but nothing else yet. Bug is really frustrated right now because she doesn't like being so limited, but then she doesn't like her tummy hurting all the time either. We are adding more formula powder to the mix to increase the calorie count and may have to include polycose again. She's dropped down to 63lbs again, down from 70lbs at the beginning of Nov.

We're in the process of getting into the Oakland Children's Hospital where the dr's there are more specialized and knowledgeable with complex kids like Bug. We do not know if some of the meds she's on are causing her gastroparesis to be worse, or if her gastroparesis is just bad enough and causing everything to be really bad again.