To the Present Time

While I to tell you the story of our extended hospital stay things at home keep happening and I am feeling like I will never get caught up the present day. So to give you the final days at the hospital quickly and get us to the present day. Hunter had surgery on Friday the 18th and everything went well. Jack had he surgery on the 22nd and his went even better. We were discharged on the 24th of June. Ok, so when we got home everything was great Hunter was progressing and Jack, well he wasn’t getting worse, till a few days later. Jack is not a very good medicine taker if it is oral. He holds on to it in his mouth and then spits it back at us. After a few days of pain meds being put into him and him spitting it back out we stopped. He didn’t seem to be in pain. But a few days after we stopped giving him pain meds he started to get weaker. We decided exactly one week after being discharged that we were going to bring him back to the hospital.  We took him and thy did x-rays, MRI, and a CT scan. They found nothing out of place and not other compression in his spinal cord. They decided to keep him over night for observation. After one night and putting him back on pain meds and steroid meds he started to get to where he was post op. The doctors believed that it had to do being weaned off the steroid too soon. So that brings us to present day. Today is the 4th of July, we come home yesterday with Jack and he is doing well again. We need to keep an eye on him. One of the doctors that we have been working told us that Jack has some fluid in his spinal cord and is what is actually causing some of the weakness in his left arm. If we see his language, chewing, swallowing, vision, or hearing regressing then we have to bring him back to the hospital right away. But right now everyone is doing well and happy to be home.


About Alison

Mother of twin boys whom both have morquio syndrome
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One Response to To the Present Time

  1. Sally Anderson says:

    Am so glad to hear that Jack is doing better and that Hunter is doing so well. Sound like they have a great team of Doctors, and the boys and Taylor have loving and caring parents. God Bless you all and we hope you can enjoy this weekend and our prayer are still coming for you and the whole family.
    Love Sally and John

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