Thursday, October 7, 2010

The never ending appointment

That's what the last 12 days has felt like. One constant appointment. I learned today that it is possible for me to spend more in copays than Paul can make in one single day.

We haven't really had appointments everyday, but the days we don't have them, I am on phone calls to set up more appointments, arrange Gabriella's meds, set up services for her speech, deal with our medical insurance, etc. Let's just be safe and say Gabriella is on an unplanned fall break from homeschool with only intermittent lessons when time allows.

Last Thursday was our initial clinic appointment with our new transplant team here in Phoenix. Sure, I was nervous to go to a new team and it was no secret, but my fears were translated from nervous social networking updates to rumors of inadequacy to our team by some Gabriella lovin' followers. I think once our coordinator and I communicated directly, everything was 'all good'. I am sure if anyone gave it sincere thought, we traveled 350 miles from home to have this very well known and seasoned team take my daughter, crack her ribcage open, REMOVE HER HEART and put a new one in.... with full faith everything would be executed seamlessly. Not only did they succeed in this miraculous feat, they provided her with absolute stellar healthcare in the months to follow. Any mother would be nervous to leave such a team doctors, coordinators, nurses, assistants, MA's, etc.... the team that saved her child's life. It's one of those "why fix what ain't broke" things, but we had to come home. Not to mention the emotional factor of missing our friends on the team in California. Our family grew by employees of Loma Linda University, and leaving them as friends was no easy task either. It was never that I doubted our local team's skills, but the whole idea of change was hard to face. The safety and security I had being right behind the hospital with a doctor there that could pick Gabriella's sparkly heart out with a blindfold and stethoscope in a sea of 100 children... it was comfort. So we came home, met our new cardiologist who is a wonderful man, caught up with our coordinator and her assistant, and met the 2 MA's on the transplant team. We went over everything from a game plan into the rest of her first year post transplant, how to reach people in non-emergent and emergent matters, how to handle an ER visit and a million other little questions. I was put at ease. I guess I could say the ONLY way I would have felt any less nervous about the change would have been if I had been familiar with all of those details beforehand, but that's impossible. I think it was natural to be nervous, anxious and curious about the comparison of care we would see in the transition.

Moving on... Gabriella's heart function looked wonderful last week and again this week. There was an issue of PVC's (palpitations or extra heart beats) on her first EKG but after a 24 hour monitor and another EKG today, it seems to have resolved itself. Her Magnesium levels were a bit low, but back into normal range as of last Friday. All very minimal hiccups, hiccups we are fully prepared to experience for the rest of her life, so we are not alarmed by them. Everything seems great with her with the exception of this awkward cough... so we will have an X-ray next week to look for a culprit!

Gabriella had her first speech therapy today after not seeing Mrs Lisa for 5 months! I would venture out to say Mrs Lisa was VERY impressed with Gabriella's progress! She was super excited and said she could actually have a conversation with Gabriella and understand everything.... MUCH different than 5 months ago! She is going to work on a new game plan for future therapies and work on more specific places that Gabriella seems to struggle. She uses simplified words for things in place of a more appropriate word (retrieving a word she is comfortable with is easier for her so she skips attempting to retrieve a new word that may be more appropriate). She also is not using her pronouns or tenses, again referring to words she is familiar with. For example, instead hers, her or she, she uses 'the girl'. We just need to plant more new words (which is much easier now) and retrain her to use them! Mrs Lisa is a miracle worker, so I am excited to see what she does with this new and improved new version of Gabriella. We got in weekly on Mrs Lisa's calendar! If there is ANYTHING I am most thankful for from her sparkly new heart besides allowing her to be alive with me, it is the power it has given her brain to heal.

As far as Gabriella's meds go, we were able to hook up with our home delivery pharmacy through our insurance which gives us a 3 months supply for 2 months of copays. I also got a co-pay assistance card from one of the drug manufacturers which paid for 80% of my co-pay on one med. Our savings averages out to be 53% off monthly! THANK GOODNESS! I had a friend ask if we had hit our out of pocket maximum yet... the beauty (sarcasm) of my insurance is we have no out of pocket max for medicine and appointment copays. Maybe I wouldn't be so upset if our copay amounts weren't so dang high... but I can't complain. Where else would I take my little preexisting condition?

On to PJ.... yes, PJ is getting a spot on the blog finally! I took PJ to see the cardiologist on Monday for an annual screening. This poor kid is so traumatized from everything he has seen his sister go through, that he won't even put a band-aid on a cut. Well, when they did the EKG on him and put the stickers on, this boy FREAKED out. Enough so that his blood pressure was 148/104. For a THREE year old!!!!! The good news is his EKG looked good. But I am waiting on the results from his echo that was done today, and word on a 'prominent aorta'. On that note, I am going to just move on and not even talk about that until I get information on what it is from the doctor, for my own sanity. I'm sure you can understand my need to pretend he is completely heart healthy, right?

PJ saw our pediatrician on Monday also, for his 3 year well child visit. I don't go into these appointments expecting "well child" anything anymore.... ever since Gabriella's 4 year check up proved to lead to her being a SO NOT well child. PJ's stats are great, he is a little beast for his age. Dr Jones said he wasn't even going to attempt evaluating his speech level since PJ was having complete conversations with him the minute he walked in the door.... lol. He is a smarty pants for sure. Dr Jones wrote me a script for 2 epi pens since PJ decided to be randomly allergic to foods, along with a referral to see an allergist ($cha-ching$) and determine what foods he is reactive to so we can better prepare. His surprise food reactions lately lead us to wonder how many more we will discover?? He also wrote a referral to a surgeon ($cha-ching$). We actually had one early last year, but Gabriella's heart took over my attention. PJ was born with this lump on his right leg. I discovered it while putting lotion on him at a week old. We had an ultrasound done on it last year and discovered it's location was innocent, but we would love to have it removed before it affects nerves or grows into muscle or deeper in the tissue. Can't have anything wrecking this boys NFL career!

That makes 5 appointments this week for us. We have labs and an Xray to have done, but I am thinking those will wait until next week. We have Monday or Tuesday before the HAVE to be done for our Thursday appointment, so tomorrow I will take a day and educate Gabriella, fold 4 baskets of laundry and maybe even start sewing so I can restock my etsy shop! Next week is lighter, with the labs, Xray, clinic, and an appointment that I have to go to that I request some prayers for guidance on. Hopefully, the Jack Johnson concert on Sunday that we bought tickets for back in APRIL for my birthday will calm me and take me to a tropical place! So excited, and we almost forgot about it so it was like a little surprise! This will be our first night out just Paul and I in WELL over 6 months! Deserved, much?

1 comment:

Corey~living and loving said...

You daily schedule makes me tired just reading it. sigh...hang in there girl.

It made me happy to read about her speech teacher's reaction to G's progress. that is wonderful! ♥

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