Thursday, May 31, 2012

Another update.

We had 2 days over the extended weekend that Wyatt was seemingly not seizing multiple times a day. For those days his body was as calm as we've seen for the last 8 weeks. But it only lasted for 2 days. The seizures have returned, though not quite as frequent or forceful as they had been.

His speech is slurred and his breath weaker, it now takes a great deal of effort for him to move and control his body even in the simplest of ways. I've even been able to give him kisses without him wiping them off. And those who know our boy well, know he always wipes them off, whether he wanted a kiss or not. He's been wanting to be held, asking to snuggle and be close. He's sleeping a lot, 19.5 hours within the last 24hrs. His pain is ever present and worsens with increased seizures. At times his heart rate has dropped as low as 34 beats per minute this week. Low heart rates we're not new to, but that low is a worry. 

Since the last update, we've adjusted his clonidine dose in an effort to raise his blood pressure and heart rates. In addition to the antibiotic course that was started Saturday, an IV anti-fungal has also been added to fight back the yeast that is now very thickly coating his mouth and throat (and through out his body.) With all the recent changes made to his meds within the last 1-2 weeks, we're currently running on a very tight med schedule.


Most simply stated...it's been so hard watching him decline further. My heart breaks a little more each time. We just pray for more stable days to come again.

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Sunday, May 27, 2012

Quick update- short and not so sweet.

Where do I begin...I can't seem to collect my thoughts enough to put them into words right now. But I do want to update you all. This may be quick and not the least bit refined, but bear with me.

Wyatt continues to have seizures frequently throughout the day. He's performed his seizing abilities for both Dr. R and the hospice doctor within the last couple of days. We increased his dose of valium again and have now switched to a scheduled dosing, giving it every 4 hours around the clock. In addition to significantly increasing his Keppra and adding a full mid-day dose. He's using his bipap more and his pressure settings were increased some yesterday. His lungs are wheezy and hospice has noted hearing fluid within them again this week. The cough has resurfaced a bit and his voice is hoarse and weak. We just ended the initial course of antibiotics for the pneumonia and bladder infections on Thursday, and yesterday we started a new course of another type of antibiotic. Recently he's also told us that his hands are numb and we've found he has very little sensation anymore. There's a lot going on right now, to say the least.

In the last couple days we've had some reality based discussions about our son's health and our feelings should we not be able to regain control over the seizures again, which hasn't been easy to process for me. I still have hope that we'll regain control. Though, I'm concerned he may not return to the "baseline" that he was at before they started. It seems each time his body takes a hit, such as this, we lose a little more ground. I'm worried. And very tired currently. Not so surprisingly, sleep hasn't been in abundance of late.
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Tuesday, May 22, 2012

Maybe tomorrow.

Wyatt's antibiotics have been on board for a week now. But our sweet boy hasn't fully bounced back yet. Still his pain has stayed increased, muscles weak, his skin coloring poor, his memory fuzzy or non-existent. At times my concern has morphed into worry, as I'm not certain why we're seeing the changes that we've seen within the last 6 weeks. Things are a little rocky of late and the emails have been abundant with Dr. R these last weeks.

You may remember, in recent posts I mentioned my concern of the tics not only being "tics" but possibly seizures. Well, that suspicion seems to be correct. We began trying to reign in the clustering seizures that are now out of control, after I sent the docs a telling video of what we're witnessing repeatedly each day. It's movement that's difficult to explain or understand with only words, but in video and to witness it's more clear. IV Valium has been added every 2 hours as needed to calm his body, as well as multiple increases to his IV Keppra dose. So far, we haven't been successful in our attempts to stop the forceful jolted shaking. I've been forewarned that possibly it may be necessary that we're inpatient to gain control once again, but I'm hoping that the meds need just one more day to build up in his system. I was hoping today would be the day, but my hopes were dashed. Maybe it will be tomorrow...
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Wednesday, May 16, 2012

Postponed.

The surgery that I last posted about has been postponed. It'll be rescheduled for a later date.

Wyatt currently has pneumonia and a bladder infection. The yeast/fungus that takes up residence within his body has also began to invade to a greater degree. We started IV antibiotics on Monday evening and its likely that we'll be adding another today.

I was slightly relieved to postpone the surgery as my Mama instincts were not agreeing to it. But I'm now clearly concerned that the boy is riddled with infections at the moment.

He looks as he feels...poor. It worries me when he looks as he currently has.

Thank you all for the thoughts, prayers and messages of support. We read every one and are thankful for each.
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Thursday, May 10, 2012

Trusting in His plan.

I've learned more within the last 9 years of my life than I ever imagined I would. Recently my thoughts took me back to the day that our son was born. Like many young pregnant women I envisioned my pregnancy and birth just like everyone else. But it was very early on that I knew this child was different, he had something to prove, to teach.

It was rather remarkable that I became pregnant with him in the first place. And yet here he is.

I haven't wrote of his birth, and don't speak of it often. There are moments within the rush of his emergent delivery that both our lives were in imminent danger. I was in the hospital for nearly 2 weeks the morning of our son's birth, my husband at work, trying to keep everything under control while I lay in a bed trying to stay pregnant. It was a short while later that I began losing blood very quickly and my blood pressure began dropping. When I looked at my doctor's face I could see his fear, there was no hiding it. As they ran my hospital bed through the back halls of the hospital, I remember praying to God repeatedly. My body shaking, my hands clutching my belly holding my baby, the bed soaked with my blood and pleading to Him, that if He do nothing else, please protect my baby. I could hear the doctor, then standing behind the head of my bed in the elevator say "Amen." Later, in the cold, sterile operating room just before putting me to sleep, as the doctor stood over my body prepared to operate, he took my hand, reassuring me "I'll take care of your baby." And I believed him.

I woke awhile later, asking if my baby was ok. "Was his heart beating?," "Was he breathing?," "Did he cry?" were all questions I needed answers to. He was ok, we now know how strong he is. We've heard different recounts of his delivery from doctors and nurses, but were told that he was born with no heart beat. Yet after the neonatologists did what they needed to start his heart again, our 2 pound baby began fighting. After pulling the breathing tube from within his own mouth that first day I should have known, he's not quitting. 

My son has given me the gift of faith, trusting fully. God has a plan and while we may not understand why things happen the way that they do, it can be comforting to know that He's there. I've seen him work in our life and in Wyatt's. I've felt his peace and love surround us in times that my trust was waning. He has a plan, our amazing God.


As Wyatt woke today at noon, hurting, he groaned "I don't feel good." I removed his bipap machine to put on the nasal cannula. As I move the cannula to his face I can hear the whistle of oxygen rushing through the small tubes on the end, as his oxygen need is high. He asked to stay in bed for awhile and when I began trying to motivate him by telling him of my plan to go shopping this afternoon he declined, saying "I just don't feel good, Mommy."

When bringing our baby home from the NICU I felt relief, feeling the worst was behind us. The fight was over and now we could begin living. Little did I know, huh? But live we certainly have. Our son has taught us how to live within the fight.

I've encouraged him to get out of his bed today and sit in the swing. He really doesn't feel well, it's clear. But he played with Jilly, helping her to read a book. He takes his role as a big Brother seriously and enjoys teaching Jilly what he's learned. And she certainly enjoys her role as the little sister, telling her big Brother how much she loves him several times a day. And sometimes saying it just to hear him groan back, "I love you too." He had a short break of a few days without the deep cough that had been lingering, but it's since returned along with lowering oxygen levels and increased heart rates. His body tic-ing every few seconds, minutes during a long stretch. There is no one thing that we can see that's stressing his body, making him feel so poorly. But possibly a combined effect of several issues.

I promise him now, just as I did when he was my 2lb baby and unable to even open his own eyes, as long as he's fighting, I'll fight too.


This week the decision was made to move forward with the surgery that I mentioned in the last post, in an effort to bring him more comfort. At the time being, his name is on the surgical schedule for next week, less than a week from now. To be honest, I'm still feeling uneasy. I'm relying heavily on that trust and faith that I just told you about, praying again that my baby will be protected.
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Tuesday, May 1, 2012

The roller coaster (of life.)

The spring weather has been erratic in our area of the country. One day Eighty degrees and a day or so later its only Forty. It leaves me wishing for more predictable spring-like temperatures. I suppose Wyatt and the weather have something in common these days, their lack of stability. We've been trying to adjust and re-adjust as needed recently, both in our wardrobe choices each day and for our boy.

It's been a couple weeks since my last update. We've been laying low, watching concerns appear, deciding what to do about several and trying to live life around the changes we're witnessing. I've always thought I handled change pretty well, I even greatly enjoy change in some areas of life! Though, change with the boy is something that quickly causes an extra layer of stress and worry now a days. Wyatt began presenting with rather involved motor Tics within the last month, which are greatly bothersome to him. Repeated stretching and rolling his head and neck in circles, his arms stretched out and his hands turning in circular motions, his legs rigid and shaking forcefully. We're not at all convinced they're all actual tics and not seizure activity, but either way it's clearly neurologically based.

Part of this weekend has been a struggle, as his anxiety is high(er) and he's struggling with sleep. He's uncomfortable, his mind running and just not able to organize his body into a sleep cycle...again. After trying to convince him his CVL dressing was perfectly fine and not needing to be changed, but still hearing him ask repeatedly if we needed to change the dressing, we decided at 11:30pm to gather our supplies. Hoping that having it completed would relieve his mind enough to allow him to fall into sleep. It didn't quite work as we had hoped, he fell asleep to only wake quickly to a coughing/gagging fit. He's had this cough/cold for nearly 3 weeks now, a stuffy nose, losing his voice daily and coughing throughout the day and night. Just as I begin to think he's nearly over it, it starts all over again. We've been doing saline nebulizer treatments to help provide moisture and thin secretions, turned up the heater/humidification on his bipap and added nasal sprays to try and help. I sit here now listening to the "Glub. Glub, glub, glub." of his bipap tubing that has a small amout of trapped condensation within it.

We saw Dr. R last week, who also promptly noticed the changes in our boy. A couple weeks ago I was hoping that the blood transfusion he received would give him the boost that his body needed to turn things around a bit. A few days later I talked with Dr. M again, the palliative care doctor, about increasing his methadone dose, as his complaints of pain were very frequent and this is something that we've talked about with her previously. Unfortunately, an increased methadone dose doesn't come without very serious risks for our son. We noticed a difference in his pain levels initially with the change, but the last few days I feel as if we've heard just as many complaints as before. He appears fatigued and moving at a "slower" pace...both mind and body. Neurologically things are clearly amiss. In our appointment with Dr. R we increased his IV Keppra dose and added an anti fungal to swab throughout his mouth to help lessen the yeast covering it. We discussed blood flow (or lack there of) and its effects. We were also able to talk with him about the proposed urological surgery. We haven't come to a decision yet if we should move forward with another surgery or just make do. I'm not sure there's a right answer...making these decisions isn't easy at this point. The surgery won't necessarily "fix" what's going on, but is purely to reposition the catheter placed within the bladder for his comfort. But certainly the surgery will provide more discomfort well before any comfort can be had. That's precisely where my hesitation lies.

Wyatt was obsessing over a roller coaster app on the iPad the other day, which isn't unusual. He couldn't get enough of the stomach turning simulation...up, down, right, left and complete loops over and over again. Roller coasters have been a fascination for him for as long as I can remember. Which I find ironic, you know, as our day to day life is very much like a roller coaster! Often there are blind twists and turns that I never see coming until we're in the midst of them. (And he says he'd never ride a roller coaster...)


Yesterday, as he was watching this week's episode of The Amazing Race, he declared in his current whispery, gruff and crackly voice that he really wants to be on that show "when I grow up." Just like he tells me every week after watching. Oh, my boy. How I'd love to watch you racing around the world on The Amazing Race someday!
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