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.

Moving Day

Well the day that seemed so far away is here. Right now I am sitting here on the airplane, 30,000 feet in the air with Zach, Ellie, and Ava. Frank, the other 4, and Amy are someplace else on the plane.

Today has already seen its share of adventure.

To begin our day we were finishing getting our carry on bags and suitcases ready as the fire alarms in the hotel started screaming and the strobe lights flashing. Having awakened with a mild migraine already and my head sensitive enough that touching my hair hurt I knew I needed to leave immediately. Grabbing Ava, she and I left, and Frank gathered the kids.

Once given the OK, I stayed out front because by this point the taxi was now due any time. Frank and the kids returned to the rooms and retrieved all the luggage.

We then helped the driver load everything, said a final goodbye, and left APG for the last time.

Once at the BWI we began the check-in process. Everything was good to go. Amy's crate tagged for the plane. Suitcases off to be loaded on the plane. Now off to the TSA lines.

The kids went through, Celidah didn't know to leave her jewelry on and almost lost her young woman's medallion.

Ellie went through and everyone was lost as to what to do with her feeding pump. 2 supervisors later, and 3 workers (1 not using latex gloves) they finally figured out that they only needed to check her hands because her bag is clearly a medical device. Then our medical bag had to be visually inspected because things (I bet her spare GJ tube) looked strange and odd. So a quick look (lol puzzled look) the TSA said, "um this bags good, it's all medical and medicine. Looks like for the little girl there."

All was great until we boarded and we found out the crate for Amy was to big. Why we're we NOT told 3-4 hours earlier? The flight was held up as southwest searched out a new (we had to buy it) soft crate so the plane could leave.

Yay!!! We could now take off!

Well... Not quite.

The vehicle that pulled the plane into position to begin the taxi wouldn't let go of the plane. Emergency maintenance. LOL they had to bring a crew over to fix the release thing.

50 minutes late, all was finally right in the airplane world and we were taking off.

We are now nearing Vegas and will be landing around 5 something Vegas time with hopefully just enough time to dash to the next terminal, charge our phones some, and take off again.

AHS Marching Band

This past week has been a very and busy week for the kids. 

Friday Corbyn, Jade, and Jairon had the Harford County Band night. During this event all the feeder elementary and middle schools for Aberdeen join the high school marching band on the field. This year they had over 350 students playing together. The elementary kids played one song while the middle school kids played two songs then everyone marched off together. The smiles, excitement, and pride from especially the youngest kids was wonderful to watch.

Sunday the county had its annual Showcase of the Bands. Everyone was delighted the weather held out and allowed all schools to perform. In my opinion, only three schools really excelled and had marching band programs that were not only entertaining but showed solid commitment between both students, parents, and staff. Aberdeen, North Harford, and C. Milton Wright. If the schools were judged I'm not quite sure who would be on top of the three. 

CMW for sure has the largest marching band. I don't remember if North Harford used music or not. However, with the wind, the schools relying on music were greatly affected as the lyre pages were flapping all over and if music was not taped in place, flying all over the field. Many students relying heavily on music were often  unable to look up as needed and instrument bells faced downward, causing a natural mute. Especially with the wind.

Poor Jade has been sick this week, but refused to miss the game. While she was running a fever and not at school on Thursday, she went on Friday so she could make the game (fever and all). Then still not feeling well on Sunday, she went anyway because again she was not going to miss the performance.

Last week we discovered petechia rashes on Corbyn. Blood work confirmed his platelets are indeed dropping again. His band instrument is the bassoon, marching band, auxiliary percussion, meaning he stands still banging things keeping a steady rhythm. He'd be just fine for both the game and the show. We'll keep an eye on him and let the school know when he needs another emergency IVIg infusion. We tag along to everything anyway.

You're Not A Good Anesthesiologist

Chantelle has quite the personality and often speaks what she is thinking. During her last surgery she had a new anesthesiologist and did not think she was good because she all business and did not have any good jokes to make her giggle.

As she was in IRC and in the process of being put under with the laughing gas first, Bug is used to the anesthesiologist telling her jokes to help her giggle and take good deep breaths. Well this anesthesiologist was business and this step was not as important to her. This step is an important part of the routine that Bug has become used to, and skipping this step is unacceptable, as was pointed out.

Bug- You're not a good anesthesiologist!
Dr.- Oh really why is that?
Bug- Because you don't know any good jokes. You have to know jokes and makes kids like me laugh. I know jokes too but that's your job not mine. I'm not scared, but you can't let others get scared.
Dr.- You're very right.

At this point she tried telling a joke and Bug laughed saying "that's worst joke I heard." She then told one and had everyone laughing. At this point the anesthesiologist nodded to the team to used the sleepy medicine and she drifted off to sleep.

As I was walking out of the room the anesthesiologist motioned for me to come to her an with a very serious face she told me, "Your daughter is right. It's my job to help make sure these kids are not scared and their last memories are happy silly memories. Many of them will wake up confused, scared, and in so much pain because of what we have to do. I need to help them better."

Failed Feeding Tube and Tube Change

So almost three weeks ago during an appointment with the pediatrician Dr. M to take care of paperwork for the military for our upcoming move we discovered the stability button in Chantelle's G-Jet (GJ feeding tube) had failed and her tube was sticking over three inches away from her stomach. At the sight of this my heart dropped into my stomach, and Dr M commented that he was sure that not right.

I took the opportunity to show him exactly where the stability button is "supposed to be" and at that excused myself from the exam for a moment leaving Bug with him as I left and went to the immunization clinic to ask for a slip tip syringe. (Of course only being there for a quick appointment I did not have my bag with me, nor did I have anything in the vehicle I was borrowing) Not understanding what I was needing and that I did not need a needled syringe the immunization tech was very unhelpful. Not in the mood to run to the blood lab, Dr M and I med back up and we decided that I would simply call Johns Hopkins as soon as I got home and we would devise the best route of action from there.

We hurriedly finished the EFMP appointment and paperwork and I left. Once home I called the GI clinic, explained what was up, that we had no spare, and waited.

Finally about 4:30 that evening we were told to take her to Urgent Care to get a KUB with contrast (stomach Xray) to determine placement. After calling the insurance we get authorization and head over to urgent care only to find out that because she has GJ tube she needs contrast and they are unable to use contrast so we had to go to the ER instead. (sigh... very annoyed by now as it is now 7pm).

We left for the local ER and watched an ambulance race past us with both lights and sirens. Resigning myself to a very long night.

Once checked in I checked the time board and noticed a 15 minute wait, yet knew this was not to be with the ambulance that passed us and knew another had turned off a road just minutes from the hospital. Within five minutes of sitting down and both of of us settling into a book, four more ambulances pulled up. Within minutes, the time board jumped to a 45, 60, then 90 minute wait. The other hospital 30-40 minutes away had wait times even longer. Since we were there for a simple KUB, I was NOT making a 30-40 minute drive then waiting all night since we were already early in the line.

By the time Bug made it back to a room, I explained exactly what was up, what we needed and why. We were blessed with an amazing nurse and PA. The xray order was made, they sent her back right away for her "tummy pictures" and thank goodness her tube was in place and nice and deep in her jejunum, where it needed to be. We arrived home just after midnight, exhausted but thankful to be able to use her tube until we could have it replaced. This meant she got to stay home and not be hospitalized this time.

Unfortunately Bug was unable to attend school for the rest of the week as I had find a way to secure her feeding tube. Frustrated and still waiting for a spare tube, I got creative. Unfortunately, while she was back at school, she was unable to participate in PE or recess. The risk of her tube being pulled out was to high.

Tuesday the 13th, I got a call that they could finally do the surgery. Of course the intended day would have been October 15th. My only request was the following Monday on the 19th. If possible I wanted to keep her home on her birthday. Thankfully, Children's agreed. Finally, two weeks after her tube support, we were going to be getting her tube changed.

Realizing that we never got the confirmation call telling us for sure what time to be there on Monday, I called to verify our arrival time and discovered her surgery had been cancelled because her tube still had not arrived. As of Tuesday morning, my message stated her surgery once again had to be cancelled and rescheduled, again due to the tube not arriving.

However, 3:45 Tuesday afternoon the surgery prep nurse called for the third or forth time that day letting me know they had just received her feeding tube and Bug needed to be at Hopkins peds surgical center by 7:30 Wednesday.

At this point we now had to get her pre-op steroid prescription, and begin  her pre-op process.

Surgery went very well, and when I came back to the PACU the silly child was already wide awake.

She went into surgery at 10, we headed home at 12:30.