repeat. this is the day..that the Lord hath made...that the Lord hath made that the Lord hath made, we will rejoice, we will rejoice, and be glad in it...
This was a day, for real. So, three days after Lillian came home for her last hospital stay, she fell down our second floor stairs, vaulted over the gate at the foot of the stairs, landing on her head, butt in the air. After a very quick assessment, it was clear that she broke something in her hand/finger on her brachial plexus arm. We took her to our local ER because KY is just too far to drive for a traumatic fall. Thankfully, praise the Lord Jesus, she only had a broken finger. Thing was, it was rotated way away from her other fingers and twisted. The ER doctor informed me and two of my adult daughters that broken fingers are no big deal, they don't do anything for them and we could see an ortho or follow up with our pediatrician. So, me being me, and not a big fan of the ortho group here, for her (we have been there and done that with her broken leg) I called our pediatrician. I was told by staff he would review the films and get back to me. That was Monday, the day after the fall. The ER gave no after care instructions other than pain relief medication. I was told by our pediatrician staff we could remove the splint in a week. I, on Monday, think everything is in hand, no pun intended. By Wednesday evening, 9pm, Matt notices a prolific rash all over her torso and back. I make a few phone calls to trusted friends and family and take their advice and get on the phone with the pediatrician Thursday morning. Remember, Lillian has multiple medical conditions and is on a biologic infusion which is an immunosuppressant. She already has an immune disorder and all the other host of issues she has. Life has been a little crazy these last two months. Back to the phone, I am on hold at 8am being the 14th caller in line. I remain on hold and eventually I'm caller 8 and I've been offered, by their call system, that if I wish I can leave a message and my call will be returned. So, I did. They called my back at 9 and I give them all the pertinent information, and they tell me they have no appointments, and I should have stayed on the line waiting. Who knew? They ask me to send a pic in the patient portal. So, I did. I, then reach out to her GI team to see if this is related to the treatment she had the prior two weeks ago. By 5pm, GI has said no connection too far apart. I get a return email in the portal needing an explanation of the picture, which I did not know had not been relayed. I was simply asked to send a picture. I have a late night conversation with our pediatrician and the consensus is that it is viral. Mind you, the rash is spreading daily and ugly. I send more questions in the portal friday regarding the rash and the broken finger, with no response, which ok, I get it it's a friday and these things take time, I know ALL this. I decide she must have a bath and ask my oldest daughter to come over to re wrap. Well, I'm no doctor, but looking at that finger I jsut can't figure out how a splint is going to make that thing straight again. I call the ortho doc in town and I try to take her to walk in clinic and as we are in the car, the school calls me to pick up Ezekiel because he is not feeling well. Ortho visit thwarted. After getting no response on Monday morning, I drop my son off at school and head straight to the ortho walk in clinic. They take her straight back and the clinician seeing her is almost berating me for waiting a week to bring her in, wait for it....because this finger is going to REQUIRE SURGERY. Him" I saw this report last week and didn't understand why you didn't bring her in" Well, let me tell you, I felt absolutely sick to my stomach. SICK. They scheduled her the next day to see their hand specialist. We returned home and I sent another message in the portal, shared my heart with those same trusted friends and family, left a phone message with the ED director, and off we went to head out to her chiropractor appointment. As I was driving, I started to cry and didn't know if I'd be able to stop. I started reciting in my head, help me Lord over and over because words would not come for how I was feeling, and rejoice and be glad was floating around in there too. After about 5 miles, I started to say, you are sovereign, Lord. You already knew all this and I will trust you.
Enter yesterday, (I leave messages for our pediatrician practice manager and the ED director, again) I call her pulmonologist to tell them she's going to need steroids for surgery, because she needs them 3days prior to surgery. I spoke with his nurse and was reminded that her pulmonologist won't approve surgery for her in a non-pediatric setting due to her health issues. Well, my walls came crashing down, tears fell. I hung up with her not knowing what in the world to do and feeling more of the failure that comes along with being failed by people who we depend on to help us make decisions for her. I get online and start calling the pediatric orthos in KY. I get directed to the right practice and am told an urgent message is being sent to the clinical team and someone will call me back.
I then get a call back from the pediatrician's office and I share my concerns with her. Longer story shorter, we wind up in the pediatrician's office at 1145 to be seen for the rash that continues to consume her tiny body. They mono tested her but that was negative. Nothing gels with it being viral or an allergic reaction. (two doctors are now evaluating). We leave to get some lunch and just about 10 minutes after our food arrives, at 118pm, the practice from KY calls to get her in at 220. We beelined it to KY where after xrays and discussion with the dr there, he feels surgery is best to avoid given her extensive medical history. They numb her up (which was absolutely horrible) which was probably a matter of minutes but what seemed to last eternally. He came back and spent some time manipulating (reducing the fracture and rotating the bone back) and voila, it was straight again. They sent us downstairs and made a custom arm and finger brace for her. We go back in three weeks. We left home yesterday at 1045, we returned home at 7pm, I think. Barely having had lunch or eaten any dinner.
The bottom line is, Lillian gets great care from her pediatrician. She got great care in our local ER. She got awesome care at the Louisville Hand and Arm specialist. The problem, sometimes, lies in communication. Let me tell you, I've done a lot of communication the last several days with the powers that be.
When we arrived home last night, I had a message from PA who saw her in the office at our local ortho, concerned about me cancelling her appointment. Even though, I explained the entire situation to the staff, HE wasn't given the information.
Everything moved quickly yesterday. I was not expecting to do any of that. My hair was greasy, missed our hair cut appointments, but broken finger fixed, check, rash- still a mystery. I am thankful that we had safe travels, I am grateful for prodding of the Holy Spirit. I am thankful for my friends and family that are available to listen to my tears and to help advise me. I am thankful for doctors who listen. I'm hosting thanksgiving tomorrow and my house needs works. Kids have eye appointments today that I scheduled weeks ago. Life does not stop. I could be bitter or I could be better. I will rejoice. ( I might cry some too)
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