The new, new
I read a blog by another mom of young kids, one of which had a medical issue and in the thick of the stressful time with him, she would blog about their "new life" and then their "new, new way of life". And now I know what she meant. Each day seems to bring a "new, new" for us lately. And, coincidentally (or not so coincidentally), each day I try hard to be strong and positive but a small, weak voice deep, down inside keeps chanting, "I can't take any more. I can't take another blow. I'm so tired. I'm too tired. I'm too sad. I'm too scared. I can't do it." And yet, we keep on keeping on. With our new, new, new, new way of life around here.
I returned to work last Thursday and Adam joined Max and Ryann at daycare. All was well. Then, on Friday evening, I noticed the white of his operated eye looked very red. Ryann had just been diagnosed with pinkeye on Wednesday so I wondered if he'd caught it. But the eye was not mattery...and the lids looked swollen...I just had a sixth/mom sense that something wasn't right. I called the U of M on-call line and the resident on call that night told me to bring Adam right in. She looked at his eye and noted an increased inflammatory response (they count floating white cells within the eye or something) as compared to what Dr. B. had noted on Wednesday of that week. She sent us home with instructions to ramp his prednisolone drops back up (we'd been starting to wean down off of them after Adam's eye had exhibited hardly any inflammatory response on Wednesday). On Saturday morning, I called the U four times to reach the on-call doc to see if Adam should be seen earlier than April 4th which was when Dr. B. had said we were next to be seen, after that appointment on the previous Wednesday. I was instructed to call the clinic first thing Monday morning to get in to be seen. On Saturday night, Adam suddenly developed a hideous rash along his hairline and forehead. He and I spent nearly three hours at his pediatrician's urgent care on Sunday to find out he was having an allergic reaction to "something". We still don't know what but the hydrocortisone cream the urgent care doc prescribed seems to be working.
On Monday, I called first thing and got Adam an appointment at 9:45. There was some mix up about who we should see and we waited nearly 45 minutes and then saw an intern who noted an even more increased inflammatory response than what was noted on Friday. Since it's been nearly two weeks since Adam's surgery, this is concerning. We were told that Dr. B. should definitely see us but he was in surgery until 12:30 or 1:00...that was at about 10:45 or so. I made it out of the clinic and down a few floors and then I broke down. I was choking back tears and called Stu at school and asked for him to be reached urgently. Thankfully, he was able to get someone to cover his classes and come to the U to be with us. Smart Daddy - he grabbed a foam ball, some playing cards, a pen, and some paper for some entertainment while we waited. We ate lunch in the cafeteria in the Phillips-Wagensteen building at the U. When we saw Dr. B., he confirmed that Adam's eye is definitely exhibiting an increased inflammatory response. In addition, the vitreous fluid behind his implanted lense is cloudy (we need to pray that this is due to the inflammatory response and not a "rebound cataract" from the surgery, otherwise Adam will have to undergo laser surgery to correct that issue) and he has developed amblyopia in the right eye after his brain must have been favoring his left eye because of the dense cataract. Adam started taking oral steroids this morning and his eye patch (shield) on his right eye will come off, as scheduled, after this Thursday. After that, Stu and I are to do our best to get Adam to wear an eye patch on his left eye to force Adam to use his right eye and strengthen it. The sooner we can get his right eye situation under control, the sooner we can do surgery on his left eye, and the sooner we can get Adam in glasses which will be ideal so that he will have excellent vision both near and far. We have another appointment with Dr. B. next Monday afternoon to check on Adam's progress. We're praying for good news. Poor Adam could really use a break. And so could his Mom and Dad.
I have lots of lovely pictures of Adam during this healing process but I am honestly too tired to post them right now. But I will, soon.
I returned to work last Thursday and Adam joined Max and Ryann at daycare. All was well. Then, on Friday evening, I noticed the white of his operated eye looked very red. Ryann had just been diagnosed with pinkeye on Wednesday so I wondered if he'd caught it. But the eye was not mattery...and the lids looked swollen...I just had a sixth/mom sense that something wasn't right. I called the U of M on-call line and the resident on call that night told me to bring Adam right in. She looked at his eye and noted an increased inflammatory response (they count floating white cells within the eye or something) as compared to what Dr. B. had noted on Wednesday of that week. She sent us home with instructions to ramp his prednisolone drops back up (we'd been starting to wean down off of them after Adam's eye had exhibited hardly any inflammatory response on Wednesday). On Saturday morning, I called the U four times to reach the on-call doc to see if Adam should be seen earlier than April 4th which was when Dr. B. had said we were next to be seen, after that appointment on the previous Wednesday. I was instructed to call the clinic first thing Monday morning to get in to be seen. On Saturday night, Adam suddenly developed a hideous rash along his hairline and forehead. He and I spent nearly three hours at his pediatrician's urgent care on Sunday to find out he was having an allergic reaction to "something". We still don't know what but the hydrocortisone cream the urgent care doc prescribed seems to be working.
On Monday, I called first thing and got Adam an appointment at 9:45. There was some mix up about who we should see and we waited nearly 45 minutes and then saw an intern who noted an even more increased inflammatory response than what was noted on Friday. Since it's been nearly two weeks since Adam's surgery, this is concerning. We were told that Dr. B. should definitely see us but he was in surgery until 12:30 or 1:00...that was at about 10:45 or so. I made it out of the clinic and down a few floors and then I broke down. I was choking back tears and called Stu at school and asked for him to be reached urgently. Thankfully, he was able to get someone to cover his classes and come to the U to be with us. Smart Daddy - he grabbed a foam ball, some playing cards, a pen, and some paper for some entertainment while we waited. We ate lunch in the cafeteria in the Phillips-Wagensteen building at the U. When we saw Dr. B., he confirmed that Adam's eye is definitely exhibiting an increased inflammatory response. In addition, the vitreous fluid behind his implanted lense is cloudy (we need to pray that this is due to the inflammatory response and not a "rebound cataract" from the surgery, otherwise Adam will have to undergo laser surgery to correct that issue) and he has developed amblyopia in the right eye after his brain must have been favoring his left eye because of the dense cataract. Adam started taking oral steroids this morning and his eye patch (shield) on his right eye will come off, as scheduled, after this Thursday. After that, Stu and I are to do our best to get Adam to wear an eye patch on his left eye to force Adam to use his right eye and strengthen it. The sooner we can get his right eye situation under control, the sooner we can do surgery on his left eye, and the sooner we can get Adam in glasses which will be ideal so that he will have excellent vision both near and far. We have another appointment with Dr. B. next Monday afternoon to check on Adam's progress. We're praying for good news. Poor Adam could really use a break. And so could his Mom and Dad.
I have lots of lovely pictures of Adam during this healing process but I am honestly too tired to post them right now. But I will, soon.
Comments
I can only imagine the amount of stress you (and the family) have been thru in the recent month or so. Know that there are several people who can and will help you and Stu, also be assured you are in their prayers as well. Everything will work out! Never hesitate to call to unload, that is what friends and family are for.
Love
Joe
This your Uncle Joe. I can only imagine what you are all going through right now. I felt I should let you know that God has Adam in the palm of His hand and that you are not alone. God has a plan for everything that happens in our lives. After Adam has been healed you will look back on this season and understand that plan. Do not stop praying and keep your faith. Angie and I are praying for all of you. Love, Uncle Joe (The Greatest Uncle Ever) and most modest.