|Parker's doc in PICU first met him at Camp Boggy;|
Nice familiar face!
Saturday, May 31, 2014
We saw the pediatric ophthalmologist specialist who ran multiple tests and shared her concerns about his vision and she felt with his high CSF pressure he would need a shunt. She called the neurosurgeon while we were there; and he agreed to see Parker in the morning. So we stayed in town overnight and saw the neurosurgeon in the morning.
Parker is not an easy child to medically treat. There are so many medical issues to consider, but I am so grateful that his pediatric rheumatologist/immunologist took the reins on this to steer us in the right direction and to coordinate with Parker’s docs because I honestly didn’t know what to do for him anymore. The neurosurgeon agreed with our concerns about his multiple spinal taps and increased cerebral spinal fluid. After much discussion about the complications of putting in a shunt for a child so immune compromised and a little more fragile than most, the decision was to make a very scary and bold move but under medical observation in the pediatric ICU (intensive care unit).
Topamax was obviously not working. His vision is so precious; we could not continue down the current path. Parker’s pressure was increasing even more and his head aches and visual intermittent blindness was increasing. Originally, his neurologist wanted to use Diamox to treat him, but couldn’t because he has both a sulfa allergy and a corn allergy (corn is a binding agent in many meds). But because the Topamax was not working his team felt we needed to actually try Diamox even with his previous allergic reaction.
So, Parker was admitted into the pediatric ICU and that night he was giving Diamox via his port because there is no corn in the intravenous form. The doctors and nurses all stood in his room, with epinephrine shots, benedryl, and crash cart on stand-by, during the 15 minutes it took to infuse the Diamox into his port. As a mother, this was incredibly intense…as I am sure it was also intense for Parker. We distracted him with videos and he actually did awesome while it was going in. I was so hopeful…then about 10 minutes later, he started turning bright red with hives; and he said his throat was feeling thick like something was stuck in it. Everyone started to ramp up in the room…benedryl was given, then more benedryl was given, then solumedrol was infused. He was beginning to breathe easier… and everyone started calming (except my beating heart…). He WAS breathing and that was good but through that very long sleepless night afterwards, I was on pins and needles. Thankfully the benedryl helped him sleep. But with the blood pressure cuff going off every five minutes for two hours and then about every 15 minutes the rest of the night…along with many beeps and alarms on the monitors…I did not sleep at all. We were told by the night doc that this probably meant we were going to have to do the shunt.
All that night, I was on high alert and trying to prepare for my baby to go into surgery. By morning, the plan had changed. His rheumy came to discuss not wanting to give up on the Diamox quite yet, despite his reaction. I have every bit of trust in her but I was absolutely frightened. I explained to her that I have gone into anaphylaxis many times and that this was a huge concern. She too was concerned and she brought an allergist into the mix of docs to discuss this. She explained his complex medical issues in great detail to the allergist and as I listened and processed, it reminded me how incredibly blessed that this doctor is caring for our child and that she totally has his best interest in mind. Because he didn’t go into full anaphylaxis, they felt that it was worth a try to desensitize him to this drug under continued observation in the ICU. This was really hard to share with Parker. The doc did a great job firmly explaining what was going to happen; and that they were going to keep him safe. Then I watched the doc soften, and share so much love with her eyes and gentle caring touch and Parker seemed to understand and trust her fully. He then told her that he believed in her because she has already saved his life. It took every ounce in me not to burst into tears as I watch the doc’s eyes well-up. I know she understood the enormous trust that we had in her.
Prior to starting the desensitization process, the priest came and we prayed and he anointed him with holy oil and put much hope into the process he was about to endure. So we started again, but instead of pushing the med through his port, they had him drink it (majorly yucky). Over the next two days, the Diamox dose was slowly increased all day long. Parker did amazing! Yes, he still had hives. Yes, he still itched like crazy. Yes, he felt absolutely miserable with fatigue and pain…but he could BREATHE. This was really remarkable. I know angels surrounded our child.
Now he is at the full dose and he has maintained it for a day, even under these very uncomfortable and itchy conditions. We were just moved down to the floor he is usually on for a few days to continue to monitor how he does on the full dose.
Our family wants to express our incredibly deep gratitude to everyone who has been following Parker’s journey and encouraging us. Systemic juvenile arthritis is a disease that needs more attention and funding and these families who endure what we go through are the most resilient individuals we have ever met. This week was especially emotionally difficult for me because three individuals passed from this disease. I feel so fortunate to have our smiley, funny, compassionate Parker in our lives. We must continue to share our story, as hard as it is, so that others may understand and we can get closer to our much needed cure.
We thank all of you for your ongoing love, prayers, and donations. We had several friends and family make High-$5 donations in Parker’s name and this has really made Parker smile huge. When you don’t have much control over what is happening to your body, doing something positive and good makes all the difference. Parker is thrilled to be able to help other families who have children with chronic illness through High-5-Club. (Click here: www.High-5-Club.org)
We are thrilled to be able to leave our “Fish Bowl” room in the ICU (pun intended) and we will “just keep swimming”…And with every stroke, Parker gets a little stronger. We love you all!
Thursday, May 22, 2014
As I look for the words to explain what is happening with Parker, I want to impress upon everyone who reads this that Parker is such an incredibly strong youngster dealing with way more than his fair share, yet he is enduring all of this like a champion. He persists…pushes himself…encourages Michael, Logan and I in such a way that I cannot find the words to match the enormous gift he is to our family. Logan, Michael, and I have a front row seat to witness his passion for life and his appreciation for the love that surrounds him. He is so thankful for all who are praying and encouraging him. And so are we…
On Monday, we went to see the neurologist for a follow-up appointment. Parker explained to the doctor that he felt he was getting worse. He told him that his eyes were now blurry all the time and the episodes of intermittent blindness have tripled. He also explained how his ears feel like a thunder storm and ring and it is hard to hear. And his head had more pressure and his whole body was now in tremendous pain (surely a JA flare). And his tongue tremors when he sticks it out…
The doc examined the inside of his eyes and Parker asked, “How does it look in there?” The doc replied, “Let’s just say, I wouldn’t want this in my eyes.” Then, he turned to Michael and me and said we needed to do a direct admission now and plan on another spinal tap in the morning. He explained that if his pressure was ok, then his increased pain may just be because we stopped the doxepin. But if it was the same or even higher then we needed to talk about next steps which might include a shunt. So we prepared for admission…by going to get food, because he would be on a drip until his spinal tap with no food or drinks. And Michael went home to pack us a bag and get meds.
|Last bit of lovin' prior to spinal tap.|
As I sat alone and waited and prayed for my sweet boy, the surgeon came in and sat on the couch next to me. There is something about the doc taking a seat next to you to talk. He started with how incredibly remarkable Parker is and that he is so smart and kind and that he chatted with him prior to the procedure. He felt that Parker was handling all this better than most adults. He said that he really thought he would be better this round…he was not. Parker’s pressure had increased in the last two weeks even more and was now at 42. He said he took off enough fluid to get him down to 20 but he was certain, this time, the post headache was going to be worse; and that we should really just let him sleep through the first two hours of not moving. He then went on to explain that he was most concerned about his vision. As I sat staring at him with tears welling up in his eyes, I began to cry. I asked about my biggest fear…could he go blind? The answer…yes. He then said that he felt that doing a shunt in his head is quite complicated with his medical issues and that he felt that they were more likely to do a shunt in his spine or put a bolt in his head to periodically tap it and drain fluid as pressure builds. I then said, “no, he can’t lose his vision, he has lost too much and this cannot happen to him.” After he left, I sobbed…both his pseudo tumor and the papilledema had gotten worse.
Once I gathered my composure, I went to Parker and held his hand over the next hour and until we went back up to the room. Well…..the plan had changed while I was downstairs with Parker. The neurologist had talked to the neurosurgeons and they didn’t feel comfortable doing surgery until there were no other options…so they decided to increase his Topamax and send us home. I asked why because it obviously was not working for him…but he was firm that this had to be done first. So then I asked if that meant that he would need another spinal tap. He just said we would cross that bridge when we get there. He then advised us to find a neuro-ophthalmologist who could put in a sheath in his eye to protect his vision because if this pressure on his eyes continues for another 4 months (6 months total), then it could cause permanent blindness. Unfortunately the neuro- ophthalmologist at this hospital was in the process of relocating and the next closest doc that he knew of who does this surgery is down in Miami. So, we packed up and went home that evening to explain to Logan what was happening to his brother, to rest, and to come up with a plan.
Yesterday, I called Parker’s rheumatologist/immunologist and explained what was happening. They too would recommend Miami but that they also have neuro-ophthalmologist at their hospital. So, now they are trying to get Parker in by Tuesday (since we will be there anyway). Today, I spoke with Parker’s insurance case manager and the Miami docs are not in network. So, if we have to go that route, we will have to get special permission.
|Hospital art made with surgical instruments.|
We thank everyone for giving us some space to be a family, to process all this, and to move into our next steps. Of course, we are clearly not done with this newest battle and we appreciate every single sentiment, words of encouragement and your ongoing endless prayers for Parker. Much love and hope.
Saturday, May 10, 2014
I believe that Parker’s life has great purpose. He has such amazing strength and every opportunity he has, he shares his love and smile with others. As a mother, this makes me so very proud. But more than anything in this world, I want to take away his physical and emotional pain. I want to somehow take away his worry and his fears…the fears that wake him through his tears at night, when his subconscious takes over. Over these last two days we have been processing a ton.
|The photo on the wall looked like this.|
Last Thursday, we went back to the hospital to see the ophthalmologist to see how his eyes are doing under the pressure of his pseudo tumor. Unfortunately, they look bad. The doctor took a picture off of his wall of “inside the eye” and started to explain what was going on with Parker’s eyes. Parker says, “Hey, since I was two, I thought that picture on the wall was a picture of an orange (because it kind-of looked like one). I just thought you really loved oranges.” Of course we all busted out laughing. It reminded me that children can see things we don’t…
Then, Parker shifted gears and started asking a ton of questions and I could see his mind processing every single word with fright all wrapped up in his incredible strength. I just let him ask…as I held my breath, not believing what I was hearing and witnessing…that this couldn't actually be happening with my baby. But it was really happening. Neither of us shedding a tear…we just listened.
The doctor explained that because we had to go with a less effective drug (Topamax instead of Diamax), that it may not be very good at treating the pseudo tumor that is causing the papilledema in his eyes. There is a ton of pressure on the back of his eyes. This is why his vision keeps blacking out. He said that the back is not concave as it should be…Parker responds with “so it’s convex then?” The doc said, “Yes, and the optic nerves and vessels are also all swollen.” Parker then asked, “Could I lose my sight?” The doc replied, “yes, but we will do everything we can and that is why you are here; so I can keep an eye on them.”
He then explained that we are just trying to buy time with the Topamax in hopes that it will somehow lessen the pressure. But …he felt there was a high likelihood that a shunt would need to be put into his brain to drain the cerebral spinal fluid to either the heart or stomach to lessen the pressure. Parker asked if that would work; would that save his vision? The doc said it could, but if it didn’t work, there was still one more option of doing surgery on his eye to put in a sheath to act as a protector of the optic nerves. I know these types of procedures happen with other children but this is MY child… who has both autoimmune issues and immunology issues and any time any surgery or trauma occurs with the body, it is very scary because the body tries to attack. But of course we will do whatever we must.
As we left, Parker went into his ultimate charmer mode and chatted away with the nurses about how awesome he looks with his purple hair and wishing them all a “happy nurses’ week”. We proceeded downstairs to records because we ordered all his records from last week’s hospital stay…and again, as we passed the many nurses and staff he celebrated them and thanked them for being nurses. He gave so many high-5s and cheered on many people; and I am certain he was coping at the same time.
After we got the records, we went to see my mom and grandma to deliver our mother’s day love. His great gram asked how he was doing, and he busted into tears. Then, he took a few deep breaths and said, “Give me a minute, and I will explain.” Then, he proceeded to tell them both all about his doctor visit and smiled and said, I’ll get through this. It will be ok.
|Laying relieves head pressure.|
When I got home, I read the entire stack of medical notes from the hospital stay last week. It confirmed all that we already knew…but it also had two pieces of info that concern me. Parker has a lesion on his right frontal lobe…we knew this…but we didn’t know that the radiologist recommended repeating the MRI with triple contrast. And there is a pars intermedia cyst on his pituitary gland. They did an extra MRI of his pituitary because he is supposed to get growth hormone. Endocrine told us that if anything is on the pituitary, then he couldn’t have the growth hormone because the growth hormone causes everything to “grow”. This additional bad news is very hard to process as the growth hormone was going to hopefully help multiple issues. I did call the doc about all this but of course we have to “wait the weekend”.
So now, we juggle our schedules so someone is home with Parker because his eyes feel a bit like a ticking time bomb. He is having more head pressure and nausea. If he begins puking, we rush to the ER. We have to trust that things will get better. We have to have faith that we are moving with tiny steps in the right direction. We ask that all our friends and family continue to pray and surround us with their loving support.
Yesterday, I was at a “leadership conference” for work and one of the speakers, James Robbins, said something that really hit home for me, “Understand the power of 1,000 tiny steps.” It reminded me that with every tiny step that we make with regards to Parker’s health, it is an accumulation of steps in the right direction. But I also couldn't help but think…I also understand that power of the many who rally around our family and help carry us through this journey. That is powerful love.