Update Time!

It has been almost 2 weeks since I have checked in last! I am happy to say all has been pretty well here for us. A few things to rant about, but nothing too major. We had a few appointments for William and Isabell with genetics, pulmonology, cardiology and Isabell even had a CT scan at PCH under anesthesia. Here is the run down...

• 1/10- Met with pulmonology for William. Long story. William is a Physician Only patient due to his advanced healthcare needs. When he was discharged from the NICU we were introduced to a pulmonologist who moved and then we were assigned to one of the Practitioners in the group. After William advanced needs were not being met by the practitioner, my pediatrician Dr. Berger and I decided that we see a physician only. SO- a few weeks ago, one of the pulm clinic nurses called me following up on William's case. She recommended we come in for a visit. We see Dr. Drewek, and we LOVE her. It was recommended that we go to clinic the 2nd week of January. The thing was- Dr. Drewek was booked solid and the pulm clinic nurse recommended coming in to touch base with the practitioner. I was very hesitant to this, but also thought  William was doing well so it would be ok to touch base with practitioner so they can give update to Dr. Drewek. So the nurse scheduled us for 1/10 at 2pm. OK so I arrived at 2:06pm, checked in and the receptionist had a strange look on her face and said questioned me- asked me if I was sure we had an appointment! I was CERTAIN we scheduled for this time. So she called back to the pulm clinic nurse- and long story short, the nurse that called ME to schedule the appointment did not put the appointment in the schedule. So they told me no worries, they will see us. at 2:35 we were still sitting in the waiting room filled with LOTS of people, coughing and sick people. So I asked for a room to wait in. Then the practitioner came in at 2:55. At this point I would have rather re-scheduled instead of waiting- I planned on leaving no later than 3:10 so I could make it home to get my daughter off the bus in time. So the practitioner examined William, and talked with me for less than 6 minutes, and said she'd return in a minute. by 3:15- nobody was around and I didn't have any more time to waste so off William and I went! I had to walk out, quite P.O.'d! I work so hard to keep William well and ome and schedule as little clinic follow ups as possible during cold and flu season to keep him well and our pulmonology clinic- his LUNG specialist put us through this!? It is not easy to take William on an outing. I don't just throw him in the car seat and off we go. Our outings includee preparing a feeding pump in a to-go fanny pack bag, hook up oxygen tanks properly and any necessary monitors. Lots of equipment for outings and I did not appreciate and was not impressed with the outcome of our follow up visit.I put a phone call into the clinic supervisor, who was very sympathetic to the situation and I am glad I spoke with her.We will for sure ALWAYS be physician ONLY! And if Dr. Drewek is booked, she will be asked to look over her schedule with a fine tooth comb to see William- or have him see another great physician if need be. Managing Williams health care team is exhausting!!

• 1/11- scheduled to meet with Dr. Grebe with genetics. She follows both Isabell and William. When we seen her last in Oct 2010 she gave me some lab paperwork to do some more genetic testing for William looking for genetic syndrome called Cornelia de Lange syndrome, as William presents very similar features of this particular syndrome. Isabell presents slight features of this syndrome. If William tests positive, then we will have her tested as well. Also last we seen her in October, she recommended we follow up with cardiology and opthomology for Isabell. We were unable to make it to the office visit on this day because William was slightly wheezy and I did not want to take him out of the hose. Dr. Grebe and I spoke over the phone. Isabell seen cardiologist Dr. Ellsworth in November where he was concerned with her echo cardio gram as it appeared Isabell may have a heart abnormality called a Vascular Ring. And I was unable to get to the lab with William to have his genetics labs drawn yet. So Dr Grebe and I just discussed these things and will touch base after the labs are drawn.
• 1/14- Isabell had a CT scan at PCH ordered by Cardiologist Dr. Ellsworth. Looking for heart abnormality called a vascular ring. We did not have to check in until 11am for the procedure, and her eating and drinking restrictions were not as challenging as i thought. She had to stop eating solids at 4am and could have clear liquids until 10am. Well she didnt wake up until around 7am and coud not eat breakfast. She did ask to eat things all morning- but handles it GREAT when I told her that she had to wait until after we go to the Hand. (she calls PCH "The Hand") When we arrived to  The Hand, she was such a good and brave girl. She even got a Fancy Barbie! I went into the CT scan room while my favorite anaesthesiologist, Dr. Lenox put Isabell to sleep with a mask apparatus. I was able to help TRY and comfort her and hold her arms down because as soon as Dr. Lenox
• 1/15- We went on a family outing! Richie's cousin, Lizz's son Alessio turned 4 and they had a nice little birthday bash at the great park near their house. William just hung in his stroller, and Isabell played with all the kiddos- ate pizza and cake. Also, Isabell started not feeling well again- runny nose and droopy eyes, low energy. And sure enough it seemed to be another cold by nightfall.
• 1/17- We had a nice day, Isabell was still feeling icky. We went on a little outing, and then just stayed home. Richie had to leave back to CA around 5pm. It was so nice having hine home, we always hate to see him leave. Isabell and I stand out in the street and wave to him until he is outta sight. Yelling BYE DADDY! And he waves back at us all the way down the street. He is the best dad.
• 1/19- Isabell had a snow day at school and I was able to go to her school and watch her and her classmates and teachers play in the snow. Each month at the pre-school they have a theme. This months theme has been the Artic Winter. Colors black/white. Concept hot/cold. Letters J,M. All month building up to and learning about the snow day. It was fun to play in the snow in the hot sun here in Tempe!
• 1/20- I had a phone conversation with cardiologist Dr. Ellsworth today. He called me to discuss the CT results for Isabell. The CT did confirm a vascular ring. the ring is encircling her trachea and esophagus. The ring is snug against the airway and esophagus and could be the accomplice to her choking. Isabell is a choker. He also explained that this ring doesn't allow her much room to grow. So together we do feel like surgery is appropriate for Isabell. Good note- this will NOT be open heart surgery. There will be incisions made, but not open chest surgery. I am SO HAPPY its not open heart surgery. So anyhow, Dr. Ellsworth is sending our file over to cardiac surgeon, Dr. Pearl and we will be having a consult with him here in a week or 2 I hope! I am making my list of questions for Dr. Pearl now- my poor B-Bell!

SO, after summarizing all of this, I am out of breath! But the good thing is, we have gotten in some much needed quality HOME time. I am happy to say we are all doing well, and we are holding up well! We still have quite a few tasks on our To Do list, and will be busy. Up coming events and appointments are- William's bloodwork, follow up with ENT for Izzy, consult with cardiac surgeon for Izzy, consult with urologist/ped surgeon Dr. McGill for William, PT on Tuesday mornings, OT on Wednesday afternoons, Izzy at daycare Mon-Wed-Fri mornings and preschool Mon-Thurs afternoons, Williams synagis vaccine, AND TO STAY HAPPY AND WELL! I will update again as soon as I can!