Wednesday, September 21, 2011

The Fall before Fall



Orion WILL check out your hand and jewelry.




We had a pleasant Labor Day Weekend, our family went to Rehoboth Beach on Sunday where we met friends big and small to play. It was all of our kids' first time 'touching' the Atlantic Ocean. Skyler and Tasia have been along the shores of the Pacific in Taiwan and all three kids have frequented the Puget Sound in Washington state. Many firsts continued when Orion checked out Swedish pancakes and strawberries on Monday and we visited a fellow little friend in the afternoon. Such a nice weekend before the trying time for my family.

On Tuesday morning (9/6), Orion fell off our bed, 3 feet onto the hardwood floor. An eyeshadow bruise developed over his left eye and a straight line coming from it back over his left ear. (His CI was implanted on the right side.) The line disappeared soon enough. Orion's new movement skills, one is crawling a bit backwards with his forehead still on the surface, brings new risks.

I took Orion to urgent care in the evening after he vomited late in the afternoon. He had a CT done because the doctor was unable to look at or through his little eyes. Orion vomited again, big time, in the waiting room while waiting for the doctor to review the results. The doctor saw a mass.

Instead of returning to the exam room, we were directed to triage where they stuck Orion one time too many looking for a vein. They were clearly interested in more ideas when they let an EMT make a suggestion: stick a needle perpendicularly into the bone of his lower leg. This is where I can clearly see I cannot afford to have 100% faith in their decisions, simply because maybe they need to be more patient and they don't know Orion through and through. I said no, not that. Orion has possible osteopetrosis. No messing with his bones. It all ended with the doctor putting in the IV herself via Orion's foot. One nurse suggested I take Orion directly to Children's National next time he gets hurt. I will seriously consider that! He has to have an IV put in for his *whee*! ambulance ride. By taking him straight to Children's we can get him faster attention and maybe less needle sticking. We arrived at the hospital a little after midnight and finally was admitted around 4 a.m.-ish.

What I thought was going to be an 'overnight' observation turned into a longer stay. Ten days at Children's. It was boring, lots of waiting around in anticipation of results, no-feed orders before sedated procedures that started hours after it should have. It was frustrating for me as a Deaf person and that Thomas was unable to drive due to an expired license. (His license renewal came up right after the retina detachment in his good eye.)

Children's is a medically resourceful hospital. I totally appreciate the doctors, the many nurses, the delightfully colorful environment, the yummy chicken cheesteak from the cafeteria grill; but the overall access to communication for a Deaf person is not up to par. The best asset they had there were the VRIs (Video Remote Interpreters) that were resourceful for communicating with the doctors and nurses. It's basically a computer supplied with wi-fi and a webcam on it's own pedestal on wheels that can be moved from room to room or floor to floor. Unfortunately it took too long in between the operator receiving the language request to the time an ASL interpreter connected back to us on the VRI monitor. Two to six minutes... it's not fast enough. I can call Purple VRS (Video Relay Service) on our 3G iPad and get someone in less than 20-30 seconds. It's not immune to dropped calls and certainly makes me crazy!

I finally shed some tears of frustration on Wednesday, Day 8. A social worker came on Thursday and heard me out, of course, using the VRI. I made constructive suggestions, tossing in names of companies and Gallaudet University. The VRI is something Children's already have and I certainly could use it if I were allowed to dial in my own numbers to call home or a relay service instead of it stuck with a dedicated button straight to the VRI operator. I really do hope the hospital will follow through on it so that no one has to deal with technical difficulties when they should be focusing on their child. The social worker said it'd be done.
Our Earth angel.
I learned a lot of tips during this stay, within the hospital and outside. I can ask the nurse to print out the reports for me to read and fully digest what was going on. There's a light gadget called a venoscope which is used upon or behind the hand, arm or slender body parts to help identify veins. Remember sticking a flashlight under your closed fingers and you could see your bones? A nurse used a venoscope on Orion and got a vein on the very first attempt.

Thomas and the kids were graciously given rides to the hospital, several different times, by a friend. If you're reading this, yes, that's you. We thank you!

Hanging out.  Yes, we spent time on the floor. (Shortly after this picture, we got a mat from physical therapy.)

Sanity saving east view.

One of Team Orion's members stopped by to pay a visit and bring me... gasp... clean clothes from Skyler's backpack at school.

Also memorable is the friend who brought me the caramel cream frappuccino, no whip. Thank you!

Orion missed 2 CI activation appointments on the 12th and 13th, Monday and Tuesday.

I drove home several times for a couple hours each time. I was able to go to Skyler's Back to School Night (Day 9) but I missed Tasia's Back to School Night (Day 8). I was pleased with the fact that the people at her school took it into their own hands to request an ASL interpreter without us asking them. Thomas and the kids were able to go. They rock! Yes, this is in Prince George's county... the hidden gem of Maryland. Er, well, I guess it's not a secret anymore after this.

Orion had 3 CTs, two were sedated CTs earlier during his stay that couldn't really tell the doctors what the mass was. He had a conventional angiogram on Day 7. A catheter was put in the femoral artery and a tube was fed up to his neck and they injected dye. They were able to identify what was going on in Orion's head that was eluding them for a week. It was a hematoma (bruise). Thank goodness! Not an aneurysm. So the problem was clearly identified and the last CT was on Day 10 and it was just to check the hematoma's size. Good news! The blood was reabsorbed. We could go home at last! We were discharged sometime past 11 p.m. and we got home just before midnight Friday night.

We're glad 10 days is a memory now. (See Orion in the crib?)

Orion's smiles were wide and preciously toothy. His widest yet. He KNOWS he is home. He was so sleepy and uninterested in the hospital. Now he's home and clearly happy. That makes us so very happy, too.

3 comments:

  1. I'm sorry you guys had to go through this. Let's hope it never happens again. It's so heart wrecking if one of our kids get hurt. I am glad he is okay!! On a positive note, maybe they now know how a deaf person have to go through, they will improve.

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  2. I definitely hope that you all would not go through this again. As a mother, I do understand the frustration regarding the IV thing. I experienced it when my first son was only 3 days old. Scary! Am glad Orion is doing good. AM glad tat your kids' school provided an interpreter without you having to ask. Here in Fishers, Indiana, my kids' school always provide an interpreter or many interpreters for back to school night and parents meetings etc definitely nice

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  3. Ohh boy I'm glad he is okay now!! I absolutely love tasias picture!

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