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...