Since before we brought Lollipop home, we have talked to doctors about her condition. However, there have also been road blocks. ie, the 'specialist' we contacted with her Chinese file and had accepted into their program within weeks of getting home declaring, 'she doesn't have OI bones, so we will treat the fractures but give no medication.' She was in an arm and leg cast when we had our first face to face with him and her leg and broken in a secondary place while IN the CAST.
Now granted depending on the type of OI you have (or your child has), there is a certain type that when a fracture is healing a SUPER callous forms and is very distinctive. But at this same time we had our pediatrician, an endocrinologist and a geneticist (and his whole team of evaluators) saying "she HAS OI!"
So we went to clinic #2. A wonderful first experience and then she broke her femur. Long, long story. But when a nurse tells me my child just needs to 'suck it up' after my child being on hydrocodone for almost two weeks because of the EXTREME pain she is in and they couldn't 'fit her in' and I KNOW she has walked around on a broken fibula at least TWICE.... a mom might get upset (I justified, it had been Christmas and New Year's after all). But now after two more fractures (or should I say one, hmm, ...but where there should be bone and there isn't... So what exactly IS that?!) and the average for a return call is 4 DAYS!!!! I am fed up!
With an OI diagnosis it is common to start a medication to strengthen bones. We have never been able to do that. BUT, we have prayed all along that if the protocol clinic #2 proposed is not what we should do that God would block the way. The medication they proposed has some NASTY, common side effects. But THEY haven't seen them in children..., but they won't tell me how many OI patients they treat! (sorry, I digressed) Well with fractures and indecisive doctors, the way has been blocked.
Last week, after feeling like I'd hit my head against an invisible wall for MONTHS. I decided to reach out. I applied to join the OI parents yahoo group. I have researched, I have studied, and spoke to various medical professionals but I needed more. It took a whole day for my membership to be accepted, BUT as soon as it was I was inquiring. What doctors in Texas are best? Is there a best in Texas? My child has had... They are proposing... I need recommendations! I prayed. It took a whole day to get responses. Meanwhile I was looking at past posts and what doctor they used. Thursday, I got a recommendation for a clinic (nowhere near Texas) and a doctor confirming that the medication clinic #2 was proposing was NOT the best and didn't deal with the OI issue. Yes!!! Answers!!!
Thursday of last week after the responses and our usual busy Thursday schedule, I waffled over contacting Clinic #3 and then just before 5pm I did. Then we went for a PT evaluation that lasted 3+ hours (sorry! W), but she confirmed that doctors needed to be looking at her Chinese x-rays (something clinic 1 and 2) have not done. We have this VALUABLE piece of medical history that doctors are ignoring!!! Thursday night I had a fitful sleep. Every time I awoke, I cried out to God to help us help Lollipop. It went something like this. Wake up, roll over, 'God help!' (in my head) and go back to sleep. Friday morning I called clinic 3 again, got voicemail, tried another number and talked to a human (but a hospital staffer who just wanted ALOT of information (not about why I was calling)) and I was about to be connected to a human at the clinic and then got HUNG UP on. Tried the second number again and after speaking to another hospital rep, got the voicemail AGAIN. I am persistent. So I prayed and called the direct clinic number one last time. The NURSE (?!) who answered is the same one who ended up with my voicemail from the evening before and she was just getting ready to call me!!!!!!!
I was on the phone with Nurse J for minutes and minutes (somewhere around 45!). My main goal in talking to her was to find out who they could recommend in Texas. But the questions she answered, the questions she asked, the information she had, the concern she showed... so when she said, 'Can you get here by May 3rd?' I responded with let me call my husband and I will call you at 11. It was 10:30am, I had to leave to get M&M to OT/ST. And I knew it would be a small miracle if Mr. Incredible wasn't in a meeting and able to actually take my call. A miracle happened. I started the call with, 'First I need you to get by yourself and sit down'. We talked and decided that THIS is what we needed to pursue for Lollipop.
But miracles sometimes have a price. Our price will be most likely missing our oldest's 13th birthday. My parent's are here, but we either won't be here or will not be here until late at night. God is in control though. I spoke with Z-man about what was happening and offered options (like take the whole family). His response was, "Mom, sometimes love has to sacrifice and my 13th birthday is a small sacrifice for getting [Lollipop] the help she needs. I know you have been trying to get her help and she NEEDS this. I have seen it first hand." WOW! I couldn't believe what I heard.
Friday was spent running into/out of town. OT, ST, Spring Festival... I left for a women's retreat with our church Friday evening and spent Friday and Saturday with a wonderful bunch of women. Sunday was my dad's birthday. Yesterday began the next 'phase' of trying to get us up to Clinic #3. Airfare. We are exploring different options and will hopefully be able to know our flights by this evening. We need to be at Clinic 3 by noon on the 2nd and will probably not be able to return home until the 4th, maybe later. It all depends on what the doctor deems necessary. OH! They WANTED to SEE her CHINESE X-RAYS!!!!!!!!!!!!!! The fed ex package will arrive there this afternoon.
1 comment:
You'll be in good hands.
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