Thanking my lucky stars

I love these little cuties. They are my everything. They are the reason I smile. Love them so much, I can't stand it!

I need...

COFFEE... and would love a monkey face atop!

Talking a walk down memory lane...

Today would be a perfect day.....

To enjoy an outing to Lake Rosie.

Instead I am stuck here in Phoenix, needing to get a non-functioning, At risk for infection,  Broviac removed from my sons body. So frustrating that we are dealing with this!!

 Each time I close my eyes, I drift off into dream mode wishing I was enjoying a day at my favorite Lake today. I used to tell my friends at school that I owned Roosevelt Lake, because my dad always told me it was his lake- so therefore I thought it belonged to us! I have so many memories at Lake Rosie Posie. We used to spend Easter at the lake when we were kiddos, in fact I used to go fishing with my dad when I was still in a car seat- snow, rain or shine! I was his best Bass Fishing partner, winning several tournaments right here at My Lake Rosie.

Just took a walk down memory lane... 



Happy Monday!

Hey Leon Family fans... wanted to write a quick update. I'm pretty tired, but thought I'd share a few things! We survived our busy week last week- it was exhausting. I'll break it down...

• Monday March 19th, when we met with my kiddos PCP to talk regarding William's non-flushing most likely clotted Broviac central line catheter. We also talked about a few pros/cons of port placement. He agreed we needed to get the non-functioning Broviac out- and that it had to be surgically removed to to just consult with surgery. So, luckily I had the appointment set up for early the next morning. THEN as luck would have it, after a great day, William got a fever in the evening of 103. The fever led us right to PCH ED. at bout 8pm I called my mom and told her I needed help with Isabell, and she dropped everything and came right on down to my house to stay with Isabell. I often wonder what I'd do without my MOM! Anyhow, William and I arrived to PCH ED around 9pm. I was so nervous and scared that the fever was due to a infection from the non functioning Broviac catheter. After labs were drawn, we identified that there was no blood infection and we actually discharged to go home- at 2am!! Long night, and our appointment with our surgeon was at 7:45 the next morning. We got home about 2:30-3am, slept until 6am, and left the house at 7am to get to our appointment at 7:45am.
• Tuesday March 20- appointment with surgery. Our surgeon expressed that the current broviac needed removed and that a port placement is an option, nut automatically an increased risk of infection for William because he has a trach and the port will be up near the trach. He didn't jump to make a plan to remove the broviac which needs to be surgically removed- he ordered an ultrasound of William's veins to make a plan for port placement. I was somewhat frustrated, because at that point I just wanted the Broviac removed!
• Thursday March 22- Our clinic visit with our endocrinologist went well, even though William had to get blood drawn and we were unable to use the darn Broviac, so William had to get poked. He did surprisingly well, and actually giggled through his 'poke'.

As of today, we still have no plan of removing Williams non functioning, at risk for infection, and clotting Broviac. I ended up calling our PCP, and surgeon asking, begging, pleading, and reasoning with them to make a PLAN for removal! It's been over 2 weeks since the broviac has been flushed, and is doing nothing at this point but waiting for a clot, infection or worse. By tomorrow I should hear of a plan.... SHOULD is the key word.

This is very frustrating, and I have gotten very frustrated with my medical team whom I very much trust. I have had to be very persistent on this matter, and I feel like I have done so much already to try and make this "Plan of Removal" happen. I had to go into panic, melt sown, hissy fit mode today to get everyone to Listen To Me!!!

Wish me luck for tomorrow, if a plan isn't made, I am going to blow my top!

Spring Break flew by...

Spring break has pretty much come and gone for my Isabell and we will be back to our normal schedule starting Monday. She missed school the whole week two weeks ago since she was sick, and the past week of her actual spring break went by fast. We did not do much, but staying home was nice. She is still suffering from her allergies attacking her with severe cases of sneezing, itching, coughing, slight breathing restriction, runny eyes, bloody nose issues but she is such a trooper. I treat her with an AM dose of Clairiton, a PM dose of Dimetap cold &allergy if her cough is bad, 2 puffs of Albuterol as needed (helps cough too), a Flintstone multi vitamin, and keep the cool mist humidifier running. Along with her allergy attacks, Isabell had alot of "I Miss Daddy" moments that crushed me! She just truly and honestly loves and misses her daddy so much. We are super excited that Daddy is coming home for Easter weekend. If all goes as planned, Richie has gotten word from his superintendent with the company he works for (Mass Electric) that there is some repairs to be done to the LightRail here in Phoenix. The superintendent assigned Richie to the repairs. Richie will continue working in Houston during the week, and Mass is going to be flying Richie out here to Phoenix each weekend to work and do LighRail repairs. I am not sure how many weekends it will take Richie and his superintendent to do the Phoenix LightRail repairs BUT this means Richie would be hone on the weekends for a while on the companies dollar! This would be so great for the kids and I, we miss daddy tons.

William is doing great, despite the his Broviac Central Line setback that we are at a standstill with. We have a few appointments this week to make a plan to remove this central line and replace or place something different. Here's the weeks rundown...

• Monday 3/19- Back to our regular routine for Isaebell, up early, hair done, school uniform on, breakfast eaten, and lunchbox packed. She catches the bus (at our front door) around 8:20am. I have a million phone calls to make as soon as Isabell leaves. William has an appointment with our PCP Dr. Berger at 11:30am. We need an order for this central line to be removed while WIlliam is under sedation. Interventional Radiology Department at PCH can do this procedure with a physician's order, and we are still hanging around waiting for a plan to be made. The broviac broke/wouldn't flush on 3/13 and I was discharged from our 8 hour ED visit with a plan that my physicians could devise a plan for me. It isn't that easy to make plan over the phone, so I made appointments to meet with our PCP and Pediatric Surgeon to discuss other central line options such as a Port. Due to our PCP appointment, we have to cancel WIlliam's Foundation for Blind therapy session that is at 11am :(   Isabell gets dropped off from the bus around 4pm. William's nurse TIffani will be here from 7am-5pm. I hopefully will also be hearing on the completion info of William's stroller/wheelchair called a KidKart Express.
• Tuesday 3/20 We have our appointment with pediatric surgeon Dr.Egan (Who I LOVE) at 7:45am. This means I need to make arrangements for someone to come to my house early Tuesday am to get Isabell ready for school, pack her beloved lunchbox and send her off on the bus. Most likely Me-Maw will be designated for that task, I don't know what I'd do without my mom most of the time! She's always a lifesaver. Since we have this early am appointment we have to cancel William's PT session that is at 9am :( And Nurse Tiffani will be off for the rest of the week.
• Wednesday 3/21 Pending the Broviac removal plans, we have Speech therapy at 11am, and Occupational therapy at 12:45 for William.
• Thursday 3/22 Also pending Broviac removal, we have clinic with our Endocrinologist who is managing William's adrenal malfunction and steroid therapy at 9am in Mesa and Physical therapy at 12noon for William here at home (all therapies are at home)
• Friday 3/23 No appointments yet!
• Weekend- No plans yet, most likely spending time with family.

Oh something that is just plain funny. It happened a little while back, but one day I was playing my Ipod and jammin out with William just him and I here at home. I had it on shuffle and the explicit version of this rap song called "Back that Azz Up" came on. As soon as the loud beat started William was bouncing with the beat so wildly and crazily with a huge smile on his face. He was in his high char and the music was really loud. I was dancing around him and holding his arms swinging them, and he was having a total laughing dancing freakout. I couldn't stop laughing that entire day- my 2 year old's favorite song is Back that Azz Up. He loves singing and dancing, most of the time to kid songs- but he really jazzes up when Back that Azz up comes on. I just love my silly little boy.

William has also been having 2-3 desaturation episodes overnight when hes sleeping, and when I'm sleeping. I keep William on a pecial monitor at night that does a special job called Pulse Oximetry. My pulse oximeterdesaturation episodes 2-3 times a night where the machine detects his blood oxygen levels as low as 42%. There are 5 steps to follow when this the alarm sounds and I wake up out of a super great dead sleep dreaming of some tropical island. As I am sitting on the warm sand listening to the ocean waves drinking my fruity drink with a little umbrella in it in my dreams (and other great dreams alike) I hear this faint beeping. After half a second I am immediately alert and awakened.

1. Turn light on first! (I have one of those 'Push It" lights in William;s crib. I push on the light, and I have light)
2. Look At William. Mentally note any color change, chest rising and breathing, and anything else that comes to mind during this half asleep moment.
3. Look at the pulse oximeter's numbers (kindof doing all this at once, BUT I always look at William first. Sometimes the machine gives a false alarm.
4. Suction Airway - I fire the suction machine up and wake up the neighborhood. (The suction machine is so loud, its like starting up a diesel truck right nest to your face in the middle of the quiet night while your fast asleep) That bad boy isn't that loud, but in the middle of the quiet night its LOUD!
5. Adjust Oxygen flow/ Give breaths to William with a special apparatus called an Ambu Bag until his blood oxygen saturation's are back to normal and we are re-stabilized.

I do number 1... If machine doesn't stop beeping and he's not fine I move on to number 2. Which I already do anyway, really. And if he's still not good, I move on to no 3. And if he is still not fine I move on to number 4. And if he;s still not doing good or if his blood oxygen saturation's aren't improving I move on to number 5. I have been needing to do all 5 steps 2-3 times per night for 2 weeks now. After reaching step 5 William's blood oxygen levels return back to 100% close to  his baseline oxygen flow William's pulmonologist is awareand we had a chest x-ray to check for any fluid on his lungs. Otherwise I need to just keep doing what I am doing- and try to closely monitor these episodes while I am half asleep 2-3 times a night. I haven't been a huge whining brat about the lack of sleep I've gotten, but I'm getting tired! I'd like to say that I'm getting used to it 2 weeks later, but William has never done this sort of thing before and it's been quite tiring, and scary. I don't freak out when it happens, and I handle it calmly. I have all the things I need organized at William's bedside in the event of any emergency, and that is all I can do. Be organized and prepared.

Bedside Tools:

1. Gauze
2. Scissors
3. trach ties
4. Trach tubes Pediatric Cuffless sizes 3.5cm and 3.0cm
5. Q-Tips
6. Saline bullets
7. Plethora of Suction Catheters size 8FR
8. Oxygen
9. Ambu-bag
10. Pulse Oximeter
11. Suction Machine
12. Diapers
13. Wipes
14. Feeding pump (running 24/7)
15. Sleeping mommie crossing her fingers and toes that all remains stable throughout the night

I'd really do anything for My William. To hold him, see his contagious smile, and see his happiness fill the room daily makes my day over and over again. I am lucky to be Isabell and William's mom. They are the most amazing kids ever, and they make Richie and I very proud and make us feel so lucky to have such awesome kids.

Goodnight all...

My B-Bell

Tonight I am up late, rubbing my Isabell's back as she's having a huge allergy attack that has her coughing, itching, sneezing, tossing, and turning since 8:45 pm. I just love her so much that it hurts! B-Bell is one amazing little girl... Take a look at all these pictures. Each one captures all the greatness of my amazing little B-Bell!

All I wanted to do today was go for a walk with my kiddos!

Late yesterday afternoon, William's central line IV, AKA his Broviac would not flush. William's Broviac is a central line IV catheter that is tunneled into his body into a large artery near his heart. William has a broviac because he is a chronically ill kiddo that sometimes needs meds and fluids via IV. Since William has very little, weak and frail veins the typical IV doesn't do the trick, leaving him with several painful infiltrations. The Broviac was placed in June 2011 and has a long-term purpose- meaning that we were able to bring William home from the hospital with this special Broviac central line. We had alot to learn about the broviac. It is a HUGE, I mean HUGE risk for infection. This IV catheter is tunneled near his heart, and if any bacteria gets into the catheter and then into his blood he could suffer from a line infection which can sometimes be fatal. In order to keep the line free from germs, we have to change the sterile protective medical dressing over the area of the catheter that hangs outside of William's body. We have to change the dressing under somewhat sterile conditions. Obviously his crib or blanket that he is laying on for the dressing change isn't sterile, but I have  dressing change kits with a slew of items to be as clean, neat, and sterile as possible for the dressing change. A sterile field to lay down in the area to allow a sterile field for the sterile dressing change, a surgical mask to protect my germs from breathing on the area, sterile gloves, sterile gauze, skin protectant, and chloraseptic cleansing swabs to sterilize and clean the skin and catheter. Among a few other things. The end of the catheter has a changeable cap that has to be changed weekly as well. To change the cap, we have to rub an alcohol swab around the tip for 30 seconds to sterilize the area for the new sterile cap. And then daily, if nothing is going through the line, I just flush the line with 5mL of a solution called heprin. Heprin loosens up the blood and keeps it from clotting the line, but even with proper flushing of the line, it could still get clogged. To flush the line, I open a sterile pre-measured syringe of heprin, wear sterile gloves, rub an alcohol swab on the tip of the cap for 30 seconds, let that dry then twist on the sterile heprin syringe and administer.

So- very unfortunately my little man's broviac wouldn't flush last night, and it had an area at the end that was loose and didn'tlook right. I had been instructed by my medical team that if I ever experience problems with the broviac to go to our Phoenix Children's Hospital Emergency Department and that a special team called IV team would come evaluate it. (PCH IV Team is AWESOME!!) This morning we had a scheduled and much needed appointment with our pulmonologist Dr. Panasar in Gilbert. That appointment went well. The plan after that was to go to the PCH ED, get the broviac figured out and come home to talk a walk in this awesome weather with my sweet kiddos. I dropped off Isaebll to my mom at the hall thinking that I'd be back somewhat shortly to go home. Those plans were crushed with an 8 hour ED visit that lasted from 12Noon to 8pm. When we arrived to the ED, it was not busy at all. (I know what a busy PCH ED looks like) A nurse that was not our assigned nurse came into the room and said she works with broviacs all the time (but was not IV team) and that she needed to put a special med into the line to try and dissolve any blood clots. My nurse Tiffani pointed out the weird loose spot of the broviac and the nurse said if it breaks than IV team can fix it because she was really trying to force the dissolving solution into the line. After Nurse know it all (she had a very Miss know it all attitude) was confident that she got the dissolving solution into the line (which Tiffani was confident that the solution did not go into the line properly) the solution had to sit in the line for 2 hours. So 2 hours came and went and the line still wouldn't flush. So by that point I was demanding for IV team STAT. When IV teams Michelle (Love her) came in she immediately noticed the broken weird looking end piece. She said it was not good because it appeared to be broken and could be a gateway for bacteria and she would recommend putting any solution into the line in case it has bacteria in the broken area. Meanwhile Nurse know it all was really trying to shove the solution through the line with alot of pressure. They should have just called in IV team to begin with (Like I asked them to) to take a look at it. After the discovery of the broken piece, we decided to have the broviac removed. Then there was a hiccup in our plan, because William has had his broviac


Broken end of the broviac that IV Team's Michelle cut off for a temporary repair.