Monday, December 31, 2012

Our 2012.

This year has been quite unbelievable for our family of 5. If I didn't experience it myself, I may not believe it entirely. From the lowest of lows to witnessing miracles, both big and small. 2012 was certainly not meek nor mild. Here are some of our favorite and or most impactful moments of the year-


A private screening of the Muppets movie.

Blowing it up to build it up. Construction for the hospital.



Wyatt stands and walks again.

Easter.




The baby whisperer.










Jilly graduates from Kindergarten.





Wyatt comes home again.

A special viewing of Madagascar 3. {Thank you, David and Dreamworks!}







First day of school.

Lots of prayers.

Maggie's birthday- "a formal pajama cocktail party."

 Our beach stay-cation.


The great Disney World adventure.

Wyatt's magical shoes. They are so much more than just a pair of shoes.


Maggie was very cooperative for pictures.

Ready to come home from the hospice inpatient unit.

Christmas. 




































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Monday, December 24, 2012

Merry Christmas.

Merry Christmas to all our friends, near and far! May your hearts and homes be filled with love and laughter.

Peace!


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Thursday, December 20, 2012

I will never be ready.

"Do you feel ready to let go now?"

A question I was asked months and months ago. And it echos in my mind often. My response is still the same to that question. I don't think I will ever be ready to let go. This is my child. 

I may be forced to let go.
I may have no choice to let go.
But I don't feel I will ever be ready to let go.

I've thought a lot about this, thinking maybe I should feel "ready." I've analyzed every meaning of those words and from every angle I could come up with. Through the last 14 months I've imagined many possible scenarios of what may happen, thoughts that bring tears instantly to my eyes. I've tried to prepare myself.

As Wyatt's heart rate dropped to 30bpm yesterday, my own heart rate escalated. I feel helpless, possibly one of the worst feelings in the world as a Mother watching your child decline. His heart rate has since rebounded after some time and it's sitting in a more acceptable range (for him) at the moment. But that phrase has started to plague me once again.

"Do you feel ready to let go now?" - No. I may have to let go, but I will never be ready.
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Wednesday, December 19, 2012

Home.

We are home...again. Each time we arrive home from another medical stay the feeling in my heart is strong. Always grateful, no matter what has transpired, for I've been able to bring my boy home again.

He was awake all day yesterday, from 7am until late in the afternoon, waiting to go home. He happily waved and said "Bye" to the nurses as we maneuvered his chair through the halls and out to our van.

Bradycardia (low heart rate) continues to be an issue, he does have pain and his body is edematous. I'll update more at another time. Now that we're home I believe we'll see a truer picture of how the Fentanyl PCA will work for him.
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Monday, December 17, 2012

Watch and wait.

Watch and wait...we should be professionals at this by now. Wyatt's still crookedly tucked into his bed today, leaving out a whimpery, musical hum with each exhaling breath. This morning another urine sample was taken because he's been experiencing significant left sided pain in the area of his kidney. His heart rate was not in the 30's last night, but he was experiencing more pain. So, we're not able to say for sure that the changes to his medicine doses made a difference because pain itself has the ability to increase your heart rate too. As I was checking on him multiple times through the night I would find his left arm bent back, trying to hold the area that is hurting him the most. The hospice doctor ordered another urine analysis and culture this morning, to be sure we cleared the infection that we just finished treatment for on Friday. Otherwise, we're not making any changes today.
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Saturday, December 15, 2012

Today's agenda.

On today's agenda - try to get our boys heart rate up and stable.

And how we hope to achieve that - adjust what medicines we can. That includes not increasing his Fentanyl dose today. He can still push his button and receive a demand dose...he has a 10 minute lockout, which means he's able to give himself a bolus dose up to every 10 minutes if needed. So, it's not as if we're with holding pain medications from him. But there is the concern that if we increase the continuous Fentanyl dose to better manage his pain, his heart rate will decrease further. And we certainly don't want to see any lower than 32 beats per minute. It's a balancing act, as so much is with his body. We are also decreasing his scheduled Valium doses by half for today, as well as decreasing his Clonidine dose.

It's a starting point. We're hopeful that these changes will help.

Big news- Wyatt is now off Dilaudid as of late last night. We see it as big news only because it's been in question for so many months, worried about, talked about, plans made to decrease and failed...it wasn't an easy thing to achieve. We will celebrate the small victories!


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Thursday, December 13, 2012

One day at a time.

"Beep- beep- beep- beep-beep- beep- beep" That would be the sound of Wyatt's pulse-oximeter alarming for his heart rate the last couple days. As I type it's sitting at 36 beats per minute...much too low. 50's I'm used to, 40's I tolerate, 30's make me a bit nervous these days. But, like so many other things going on with our son, there is little we can do about it. His belly is more distended and 'tighter, his eyes puffy. We're not sure why his body is trapping more fluid...my best experience based guess is it's related to the additional stress on his body with these medicinal changes. (How's that for a generic answer?!) From our experience with his heart rates too, it's very possible that is whats happening there as well.

Yesterday morning we had to change Wy's supra pubic catheter as we're running into some issues with his bladder not draining adequately. It's now done and behind us for a couple weeks.

As an update to the infection last week- the antibiotics have been working and as the weekend progressed Wyatt did begin to improve. Just in time to be transferred here. But it made us all feel a little better going into this week's events.

We're still here, in the IPU. Wyatt's fentanyl dose has been increased a few times since I last posted. He's been uncomfortable and feeling pain. His Dilaudid was also decreased as a first step in a series yesterday morning. Dilaudid has always been a questionable drug for Wyatt. It wasn't the first choice (Methadone) or even the second choice (Fentanyl) for a PCA...but after cardiac arrhythmia's with high doses of Methadone and the nation wide shortage of Fentanyl at this time last year, we had no other options for pain control. So Dilaudid it was. But it's now highly probable that he's experiencing hyperalgesia and possible neurological effects related to the drug. We've gone back and forth on trying to get him off of it for some time now, but could not find the right way or time to do it.

I had approached the doctors the week after returning from Disney World asking if we should again consider trying something different, with the possibility of bettering our boy's quality of life. In Disney I saw our boy smile and even laugh. I saw that spark re-lite within him. I'm being realistic in my thoughts of what we can achieve, of course, but I don't want to come back and just do the same thing that wasn't really working in the first place. Its worth a try.

It was just days after approaching the doctors about the idea of decreasing the Dilaudid that we got word about the shortage of Methadone. That initially stahled our thoughts of changing anything with the Dilaudid doses, as we were expecting him to rely on the methadone for pain control. But once a plan was in place and we had no choice but to switch the Methadone to Fentanyl, the doctors were responsive to and in support of decreasing the Dilaudid PCA, as well. Decreasing his dilaudid will be a process, one step at a time. Where as the Methadone was a straight switch.

Today we adjusted the continuous Fentanyl dose based on the amount of demand doses (button pushes) he used yesterday. It was a bigger step in titration than we've made in the last couple days. But he's consistent with the amount he's requiring. So, it makes sense. We've also inched down on the Dilaudid dose again this morning.

He was awake some this morning, but is now sleeping again. I'm hoping as we become more settled on doses and the changes are less frequent we'll see his body settle and find somewhat of a balance again.

One day at a time.


Thank you so much for all the thoughts, prayers and support. It's always greatly appreciated! We're very fortunate to have so much love surrounding our family. Thank you!
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Monday, December 10, 2012

The IPU.

We arrived to the hospice inpatient unit, otherwise referred to as the IPU, this morning. We were greeted by several who were waiting for our boys arrival. When we told Wyatt of the plan yesterday afternoon he wasn't too happy with us. With a little reassurance he still wasn't happy, but understood what was going to happen. That is after he asked me to email Dr. R to tell him he didn't want to go. I think he was hoping his favorite doctor would "save" him from this decision. But with his emailed reply reassuring Wy that he'd be taken care of, Wyatt responded in a short and not so sweet "Fine." I think Dr. R may have earned himself a spot next to Bryan and I on Wyatt's "unhappy with" list for that one.

After arriving he cautiously watched the nurses and doctors as they examined him and went over all his lines and medicines. We tried to focus on the many things they will NOT do here, which helped to convince him it wasn't so bad. It also didn't hurt that we brought along a few early Christmas presents to enjoy, including the very relaxing star theater. He loves this thing and we've all been staring at the ceiling this evening. In fact the planets are slowly orbiting above me as I type.

We're getting settled in. The Methadone infusion was removed this afternoon, along with the demand dose of Dilaudid. And a Fentanyl PCA was started. He's feeling the change and has complained of pain more this evening. He's also very tired and worn out from the stress of the day, which doesn't help the pain any. Right this minute he's sleeping, unsettled, but sleeping none the less.
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Sunday, December 9, 2012

The plan.

Tomorrow morning Wyatt will be admitted to the Hospice inpatient unit (the IPU.) I can say without hesitation, this decision was a difficult one for us to make. There are many differences between our regular hospital, A.I. duPont Hospital for Children, and the IPU. Some are nice changes, some are not (to us). The hospice team has been doing their best at reassuring us and trying to ease our concerns through this process. A few months ago we took a step away from our palliative care team at the hospital because Wyatt's overseeing doctor was leaving on maternity leave. At that time a hospice attending had taken over his care. That switch in care changes a lot in a situation such as this. Hospice can more easily take care of his pain medications, which is what we need to do. But the hospital is better equipped to handle his medical care, which we have concerns about. I emailed Dr. R in tears Thursday morning asking him to call our home. I had officially hit my limit. What I really wanted to say to him -- "I can't do this!" -- meaning everything. The pressure of the last couple weeks is just too much. Though, I censored my thoughts and instead merely explained the situation, looking for his opinion. At the time that he did call I had pulled myself together as the hospice nurse and social worker were now sitting around my dining room table waiting for us to make a decision. I don't know that my conversation with him helped me make the decision, but I needed to hear his thinking.

I've only received bits and pieces of the actual plan for when we arrive at the IPU tomorrow morning. Today we must work on packing, including all of his equipment, medications, TPN and supplies.

We haven't told Wyatt of this plan just yet because I didn't want him to worry about it for too long ahead of time. At one point earlier in the week I casually mentioned the possibility of having to stay at another facility, not at "our hospital", and he very clearly yelled "Nooooooo!" and became upset at the thought. This weighed heavily on my mind when making this decision. The IPU is all new doctors and nurses, he won't be arriving to all the "friends" that he's known for so many years. That's not an easy transition to make (for all of us.) Please pray that when we tell him of what will be happening tomorrow morning that he's able to accept and understand this. And that the switch in medications will go smoothly and easily with no harm to him and his body.
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Thursday, December 6, 2012

A general update.

It's been a while since I really updated. I keep saying I'm going to do it and then something happens and I get distracted again. As I think you could see in the video and pictures from our Disney trip, it was better than we ever expected. It's as if a spark was re-lit in our boy and subsequently re-lit in all of us. So very special!

Unfortunately, for the last week or more Wyatt began to show us clear signs that something was amiss. From seizures to large amounts of bleeding, increased pain to sleeping and not waking up. It was all there, not making it an easy week. Currently, he is across the room from me, sleeping. I just walked over to his loaded IV pole to check how much longer the infusion of antibiotics has yet to run, as it's also time for his scheduled valium dose. Sometimes the reality of the situation is hard to avoid...looking at his IV pole right in front of me with 5 IV pumps clamped on to the pole or in one of several bags hanging from the top, an antibiotic 'on deck' ready to be started and another small plastic bag of D5 mixed with antibiotics dripping slowly into him. Too slowly, apparently, because he needs his valium. That sentence alone should feel wrong for me to say about my 10 year old..."he needs his valium." But yet, it's become our normal. I wrote up a new tightly packed med schedule this morning, this one including the two new antibiotics that we started to combat the bacterial party that he currently has going on in his body. These bugs are certainly wreaking havoc.

Yesterday we were planning to visit the hospital in the afternoon to get an x-ray of Wyatt's foot to make sure it's not broken and then stop in to see our friends, both those who work in the hospital and the ones waiting to feel better so they can return home. I was hoping with seeing his friends that our boy may perk up for a bit. But those plans of ours were derailed as Wyatt took a left turn somewhere during the morning. Before the complete derailing he had told me to email Dr. R. I asked what he wanted me to tell his doctor and he replied "That I feel really, really bad." It wasn't long after that he complained of his head "feeling funny" and he began to seize. I emailed Dr. R explaining, "the only thing that looks relatively good about him right now would be his hair. And that's because I insisted he get a bath yesterday." It breaks my heart when he looks and feels like this. I feel so helpless, concerned, worried and at times scared. Those feelings are certainly not a novelty with this past year, but that part doesn't get any easier or normal, as so much else has. My hope is that the antibiotics will now kick in and allow his body to rest as they do their work.

To add to the escalating concerns, we learned on Saturday that Methadone, one of his pain medications, is involved within the nation wide drug shortage. He receives a continuous infusion of Methadone through an IV pump and as of right now we have roughly 3-4 days of the drug left. The infusion companies are unable to obtain anymore and we are being forced to look at other options. It's ridiculous! Yes, you are right...I know many of you are thinking it was just a short while ago that I came here telling you of the same situation with the IV valium. At this time he is running a continuous infusion of Methadone and a PCA of Dilaudid, with both a continuous infusion and demand dose given via a button that he (or we) can push. We suspect the methadone is providing a great deal of pain control for him. The Dilaudid was never great, but the only option we had available at one time. We will not increase the dose of his Dilaudid any further and he experiences an allergic reaction to Morphine, which leaves us with only one option left, IV Fentanyl. This was also in shortage not long ago and the reason why we are using Dilaudid at all. So, unless a large IV supply of Methadone appears on our doorstep we must make the switch. I don't expect it to be easy, especially now with his current state. Last week, while he was not great, I wouldn't have been as nervous. This week he's clearly more sick with an angry infection which is taxing his body greatly. There has been a lot of talk about where we will be when carrying out the switch; in our home with hospice nurses present around the clock for a couple days, in the hospice inpatient unit or at our main hospital. We don't have a plan just yet. But today we decreased his Methadone dose from 3mg/hr to 2mg/hr in an effort to stretch what we do have left as far as we can. He's been feeling a lot of pain yesterday and today, before even making any changes, so the timing of this is not ideal at all. We have IV acetaminophen (Tylenol) and IV valium to use as he needs...we're praying it gets us through. We hope by the time we see our hospice nurse tomorrow morning that there will be at least a tentative plan in the works that we can all feel comfortable with.

For now, I plan to tuck into bed next to my boy, stare at the TV for a bit and try to clear my mind of all my Motherly worries this evening. For tomorrow is a new day.


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Wednesday, November 21, 2012

Be thankful.

Our ICU on wheels has delivered us home and we're settling back into the routine of our not-so-typical lives. We wasted no time jumping back into our reality with first of the morning hospice visits and catch up lab draws. All the while slowly unpacking our 50 bags of gear that accompanied us. (I kid you not. I wish I would have taken a picture of all the bags! In the rush of things it just didn't happen.)

Tomorrow is Thanksgiving for those of us in the United States. A time that many are reminded of all that they're thankful for. Last year at this time we were just settling back into our home from an intense hospital stay. This year, we're fresh home from a vacation that a year ago I would never dreamed would have happened. Our son is still living, still here, sleeping just feet away from me. Are things better? Great? Or even good? No, not always. But this year I'm more thankful than I've ever been.

Our days are anything but easy, we have daily worries and struggles, concerns and fears, strict schedules and medical interventions. It's easy to get caught up in the uncertainty that is swirling around us. But as we know all too well we can't control, or plan, what will happen. Sometimes we just need to follow and hold on tightly to hope.

It's clear the tremendous gifts we've been given this past year. Simple gifts of love. Priceless gifts of memories. The precious gift of time. Thankful has a whole new feel in this stage of the life we're living.


Be thankful, my friends.


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Monday, November 19, 2012

Magic Kingdom.

I'm going to just leave you with a few pics of our time in the Magic Kingdom. Our last evening of the trip, which is probably best as our boy's body is exhausted. We're currently packed in the RV and driving towards our home. We left Disney World yesterday afternoon following a bit of shopping in Downtown Disney and should arrive home this evening.

Jilly playing on the beach before Wyatt woke up for the day.







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