Brent and I "never" bribe kids to get them to do things we want them to do. We will reward kids who work hard to learn a new skill, but not to get them to obey us... well, I guess now I have to say almost never.
On the way to the hospital on Thursday, Abby got very sad that I was taking her to the eye doctor and then to ER for a spinal tap. For some reason she hates eye exams. I have know idea why. Everyone there is really good with kids. She also doesn't like back pokes but that one I get.
At four years old she is just too young to understand that a 20 minute yucky procedure will make monster headaches go away for 3 days or the pressure can damage her eyes and her brain. To NOT let the doctors relieve the pressure (by removing excess spinal fluid), would be cruel. But, driving my daughter to the appointment and witnessing her discomfort before, during and after the spinal tap is never easy.
On the way to the appointments Abby wanted to know why she had to keep getting back pokes. She said her headaches weren't that bad and she wanted to go home. I knew they were so bad that she couldn't play or sleep. She had spent most of the last few days crying and wanting to be held.
Thankfully some of Abby's prayer warriors had sent her fun Christmas gifts that I grabbed as we were running out the door. While nothing could completely distract Abby from the pain and anxiety, it was a wonderful blessing to have new things draw her attention while we were waiting for the doctors to start.
Usually it only takes a few toys/books/ movies that she hasn't seen in a while to distract her from anxious feelings. I have become a master at hiding the coolest things so she can play with them when she needs them the most. When nothing bad is happening, we try to make the time at the hospital fun. Not always easy but by the grace of God we have learned to have a lot of fun in normally mind-numbingly boring places.
This time my normal shtick bombed so I promised to take her to Toys R Us on the way home. She wasn't throwing a fit, just sad. Who can blame her. I knew it was a bad idea to promise to take her there "this one time" especially when these procedures happen every few days. Even if it was a great idea, it would break the bank.
I always try to tell her what is coming because 1) it keeps her from worrying about things that aren't going to happen and 2) from being scared when all of the bad stuff is over. We have met parents who lie to their children about planned procedures and their kids are angry and terrified. Luckily, I always remind Abby that doctors can change the plan but I will tell her the new plan as soon as I know it.
Nothing about the last few days went as I had planned it. Our ER visit turned into a hospital admission. One quick poke in her port (on her chest) and one on her back, turned into a hospital admission where Abby has long history of awful memories. I am always amazed that she never holds grudges instead she truly loves her nurses and doctors.
The CT scan that was ordered to rule out a blood clot in her brain only showed a sinus infection. Okay, I know that boogers are gross but we were thrilled that was the worst thing they found (sinus infection).
The spinal tap didn't go as we had hoped but God's presence was there. They sedated Abby with the very same medications they did a week ago but they didn't work this time. Abby was awake and uncomfortable but still during the procedure. Afterwards she really cried which broke my heart. Her doctor truly cares about her and said she worked up a new game plan she thinks will work better for her.
We were shocked to discover that Abby's intracranial pressure was 32 (normal is 8-14). That explains her mood, tears and anxiety over the last few days. Hopefully now that the eye exams and ocular ultrasound is done, we will be able to relieve the pressure before it climbs that high again.
We talked about what needs to be done to help Abby long term. I was told that insurance won't approve the surgery until we prove it is a chronic condition and doesn't respond to medication. The medication we tried before failed miserably. It didn't keep her pressures low and it made her vomit at least 30 times a day. Abby lost 40 % of her body weight, herniated her stomach and was so malnourished her internal organs were wasting away.
BUT... Abby is healthier than she was back then. She is still on tough chemo but it is easier than in the past. Abby is determined to not let anything keep her from playing hard and being a "normal" little girl.
We feel we owe it to her to try the medications before we agree to a surgery that may not work anyway. Frankly, I am begging God to allow these medications to work. I am scared spitless to give her the Diamox that made her life miserable before. Like it or not, ready or not, I gave her the first dose of it this morning.
We have found some surgical options that may help and a doctor we trust. All surgeries involve risks but when your immune system is compromised the risks are greater. We would appreciate your continued prayers for wisdom.
The fact that we know Abby's eyes are not being damaged (currently) buys us a little extra time to find the best answer possible.
One of my main goals right now is to keep Abby comfortable while we search for a permanent solution. I am stocking up on anti-nausea pills and we have consulted with our hospitals pain management team. We are going to keep her on extended release morphine around the clock. We tried medicating her only when the pressure was building but we failed miserably. We got behind quickly and were never able to catch up. Abby only complains when she is in a crisis and unfortunately by then it is very hard to get it back under control.
Thank you so much for continuing to pray for Abby. Would you please pray that her pain is well controlled, she is not nauseated, we find a way to sedate her during procedures, medication controls her intracranial pressure, and that she smiles, laughs and praises God this Christmas?
Sunday night update (most of this was written yesterday): Abby's pressure are already shooting back up only two days after her last spinal tab... ugh.