Monday, October 31, 2011

South Dakota.




Last night we set up camp in South Dakota. That's right, my friends...we made it! We have the entire campground to ourselves. It's pretty funny, because who else in their right mind would be camping at the end of  October! The owners of the camp are very nice and have brought the kids a big bag of trick or treat candy. We've watched as deer roamed the camp grounds and the kids had the chance to watch a movie while settling in for the night last night.


I think we're getting the hang of this whole camping idea. Minus the first few nights of mishaps...including the littlest locking us out of the bathroom for 14 hours!


Then there was yesterday morning as Maggie woke vomiting with a 102 temperature, leaving us cleaning up a mess throughout the RV and wiping all that I could with Chlorox wipes. And then turning around to see Wyatt's G-tube draining a sizable amount of blood (a couple hundred ml's in total), which would explain why he had been complaining even more that his belly was hurting badly. We watched him throughout the day and the bleeding tapered off and by evening stopped. Maggie started to feel better that afternoon and now looks as if she's feeling fine. Wyatt's been uncomfortable and his body is struggling to regulate its temperature. He's gone between sweat soaking his hair, clothing and rolling down his cheeks to being covered with numerous blankets complaining of being cold. He can't seem to find a comfortable spot. He's been looking a little rough and it's clear his body is struggling. Though, this morning as he's waking now I do think his coloring is a little better. (!!) He put out a very small amount of bile from his Jtube yesterday for the first time in weeks and a little more bile from his Gtube than we've seen in a long time, as well.


We all enjoyed the afternoon yesterday driving through a place called Bear Country USA looking for and watching all the animals as they would walk right up to the RV.


This morning will be a special day seeing a monument that our boy has been waiting to see. And I'll be sure to have pictures.
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Friday, October 28, 2011

DeStephanos on the move.

Since leaving our home and starting on our trip to the western states of America there has been a lot of fun but some moments that left a little to be desired (though we did expect such times in our trip.) I think I'll save the "bloopers" for a fun post as we return home.

Wyatt's hanging in there with all the driving and movement. We brought along all of his pillows and such to help with positioning and he quickly found a favorite spot in the RV where he lays and is able to see out one of the many large windows. He's hurting and his body is understandably tired. Throughout the night last night I watched and could feel his body experiencing seizure like activity and this morning he woke looking more jaundiced than he already had been. Today we did break out the extra methadone doses that we have on hand for when the pain is particularly intense. Which allowed his body to relax and rest.

The girls are having fun with the freedom that riding in an RV allows. Maggie has been doing a lot of reading and Jilly has been doing a LOT of talking!

At the moment we're preparing to lay our heads upon our pillows and rest our eyes for the night. Tomorrow is another day of driving. But we're getting close!

{Wyatt seeing the inside of the RV for the first time}

{The DeStephanos are on the move.}




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Wednesday, October 26, 2011

Make-A-Wish

The Make-A-Wish foundation is in the business of granting wishes. This generous organization gives children with life-threatening medical conditions the opportunity to "make a wish." The wish can be anything...meeting a famous person, a special vacation, to be something and/or someone for a day, a newly decorated bedroom, a computer or video gaming system. Each wish unique and special, just like the children who's imagination dreams of them.


If you remember, I mentioned recently that we met with our local Make-A-Wish chapter and Wyatt was given the chance to make his very own wish. Wyatt wished to "go in an RV across the country to see Mount Rushmore, the geyser (Old Faithful) and the Grand Canyon." A BIG wish! And one that proved to be very important to our boy.

At first the wish granting organization was a bit hesitant about Wy's large wish and unsure just how it would be possible. So, we asked Wyatt exactly what was most important about the trip and what he wished to do and/or see the very most. He replied that he wanted to travel in the RV and the one place he wanted to see the most was Mount Rushmore. After narrowing down his wishes, the wish granters started the process of pulling it all together...


and this morning a large RV was delivered to our home. Wyatt smiled as the big RV pulled up in front of our home and began backing into the driveway. Tomorrow the DeStephano's are hitting the open road...we'll begin driving west in search of Mount Rushmore. I guess I should start packing! And don't you worry, I plan to update along the way and share with you our RV'ing adventures (and I'm certain there will be plenty of "adventure" to share. There always is!) Wish us luck and say a few prayers!

Thank you, Make-A-Wish! For granting our son and family this very special wish...thank you!
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Friday, October 21, 2011

Making it work.


"Making it work.", it's what we do. 

This has been a very full week. We've been trying to settle in and re-familiarize ourselves with our home and daily routines, while juggling a large volume of phone calls, nursing visits and life with three kids.

Wyatt's health seems to be at somewhat of a standstill. His LFT's (liver function tests) are all greatly elevated, he's significantly jaundiced, his pain continues to be difficult to control, his belly is distended and tender. Physically he's limited by pain and discomfort, though we continue to try to get him upright in his activity chair at least once a day when possible. It wipes out what little energy he may have had and often times leaves him more uncomfortable through to the next day, but we do know we must keep those muscles doing something each day. He may not be able to move about freely on his own, though he could very possibly be the best bed scooter and blanket kicker in this part of the country!

While settling back into our home, we're also becoming accustomed to and working out the kinks with hospice care. I think once things all fall in to place that we may have a very good team in place for our boy.
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Saturday, October 15, 2011

Home sweet home.

 After a lot of phone calls, coordinating deliveries and waiting not so patiently for all the pieces of Wyatt's care to fall into place, we transferred him into his wheelchair and hooked him up to all his home equipment. We then began to walk out of the hospital room, officially bringing this hospital stay to an end. We hugged those that we've become so close with and the nurses cheered for Wyatt as he left the wing of the hospital that we know so well.


The emotions eventually caught up to me as we were leaving the hospital and I was sitting slightly behind Wyatt's wheelchair in our van, watching his monitors and stroking his hair. I was so happy to be bringing my boy home again, but the past month of stress and worry filled my heart at the same moment. Life has changed for our family, a lot.


It could probably go without saying, Wyatt was very happy to be home. Maggie climbed into his bed, snuggled up next to him and stayed there the entire evening. They would whisper back and forth, watching their favorite shows together, at times I even caught glimpses of them holding hands. Jilly was a little more hesitant to climb through the tubes and attachments to get comfy on the other side of her Brother. But was happy to snuggle every chance that she could.

The hospice nurse followed us into our home as we walked through the door. Bryan and I got Wyatt settled and she then hooked him up to his Methadone PCA. We organized paperwork and tried to explain to her what all his attachments were. She didn't stay long, leaving us to a quiet evening alone with our children, all under one roof.

Today was dedicated to organizing and wrapping our mind around Wyatt's new schedule of care. I was on a mission to organize the 5 IV lines that are continously running from his central line, oxygen tubing, pulse ox cords, bipap tubing, G and J tubes, foley bag and the electrical cords that are associated with the equipment the best I possibly could. I think I found a system that works for now. It's hard to determine how he's truly doing today as I expected today to be rough, just from all the change and movement from yesterday. This afternoon we met with another nurse from hospice and again explained all that goes into caring for our son. A phone call was made to the palliative care doctor and the Methadone dosing was slightly increased to accomodate the change in his pain levels. We'll check in with the nurse again tomorrow. But right now he lays nearly asleep in his bed for the night. Tucked in amongst two large, soft, fluffy body pillows and all his stuffed friends.

Thank you all for the thoughts, prayers and support that has been extended toward our family recently. We appreciate you all, please know it means so much to us. 





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Wednesday, October 12, 2011

Hospice care and home.

Yesterday we've talked a lot about home. Going home. That's exciting right?! I think so. Wyatt has been needing a little more motivation for that excitement these days. His spirits are low. At this point in time, he's unable to sit, stand or do any of what he was once able to do, his pain is great. But he's still here and that's what my eyes and heart are focused on. I'm feeling incredibly thankful that he's still here, laying beside me sleeping soundly. This boy is one tough kid! But I do worry and wonder how much can one young boys body withstand?

His wheelchair was adjusted and tweaked as much as it could be to accommodate his new abilities. And yesterday was the ultimate test...he was instructed (gently lectured) into trying to sit in his chair. He needs to be able to do this in order to make the hour long ride home (at least that's what we're using as motivation.) His team surrounding him to support him both physically and emotionally, there were tears and he begged to be put back into his bed. It was really hard work. But at one point he settled in and didn't look entirely miserable, which is something to be noted! It was 38 minutes and 4 seconds before his physical therapist lifted his body back into his flattened hospital bed.

Yesterday I was asked by several people if I was comfortable taking our boy home. I sit here now looking at his entire set up in the hospital. Am I comfortable with my boy needing all this? No, not at all. Am I comfortable handling the machines that are keeping him alive, administering round the clock IV medicines and making sure his vital signs are all in check? Yes, I am able. Am I worried? Yes. Am I scared? Yes, a whole lot. But not of his care, per se. I'm very scared that he won't bounce back like we're hoping. I'm concerned that we'll need to come back to the hospital sooner rather than later. I'm worried about his comfort. But if our team can get us all the new meds and equipment that he needs in our home that he uses here at the hospital, we can do it. I don't doubt that for a second. He needs to be at home in the midst of all the chaos of school mornings, ballet classes, cub scout meetings, piano lessons and most of all surrounded by his Sisters love. He needs those girls...unbeknownst to them, they're the best therapists he could ever have!

This morning we have a meeting with the hospice company that will be joining "Team Wyatt." In this life that we're living, hospice is often a daunting thought, especially when brought up in regards to your child. What we're hoping Hospice will be for us is more support, more eyes and ears available to help us through this journey, resources available when we need them, knowledge available when we ask. We're not doing anything different than we're currently doing for our boy in regards to treatment or care. We're always re-evaluating what quality of life means to Wyatt and our family. That will all stay the same, but our hope is that we'll be able to keep Wyatt out of the hospital for longer stretches and his pain managed and closely monitored.

There are a lot of pieces that go in to getting a critically ill, medically complex child home from the hospital. So, yesterday, today and the next day, possibly the next two, will be dedicated to pulling all those pieces together and setting our sights on getting home sometime this week.
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Tuesday, October 11, 2011

Tuesday morning.

Wyatt had an abdominal xray yesterday morning which showed his organs even more enlarged than they had been. Which explains the huge belly and amounts of pain that he's in. The belly started to swell again after the prolonged seizure on Wednesday and even more so after the seizure Friday. With that we took a few steps in the wrong direction.

Tomorrow, Wednesday, is the last dose of "ampho-terrible." Our original goal was to run for the doors after the amphotericin was complete. We're keeping that goal in mind, though there is a LOT of work to be done on every ones part, including our boy's and his body. Even if we don't get home on that original goals date, ending the amphotericin is one step closer than we were.

Right now we're continuing to battle pain control, tweaking doses and changing plans.
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Sunday, October 9, 2011

Friday and Saturday.

Wyatt stayed hooked up to the video EEG through Friday afternoon. Not too long after being unraveled from the gauze and the electrodes removed, someone showed up with his new AFO's (foot/leg braces) and TLSO (back/trunk support). We had ordered these several weeks ago and were waiting for them to be specially made to fit our boy. I helped to hold Wyatt's upper half to try on the TLSO. The employee then left to make adjustments to the pieces and his physical therapist and I watched as Wyatt laid in bed, his coloring changing drastically to a pale dusky color. He began moaning that he hurt so badly. He then closed his eyes and would open them again with his eyes rolled back. We put his bipap machine back on him, noticed he was looking more jaundiced and the nurse began calling the doctors. He was unresponsive for a while and then his respirations began to decrease. He stayed this way for a couple hours, he would try to wake when shaken and his name called, but would only open his eyes for a second before they would begin to roll and close again. His coloring stayed pale. At one time his own respirations stopped completely and the bipap machine (and added oxygen) was doing all the work to keep the air circulating throughout his body. We were all worried, but were in agreement that the events appeared seizure like. As the night shift started for the evening, our favorite resident came by after she heard what was going on. We talked for a bit and then she tried to wake him. He opened his eyes as he would have if he was just taking a short nap and began to answer her questions. He then asked to watch the TV...and we knew he was back. Ever since waking his heart rates are now higher than his usual, the jaundiced more pronounced again (his bilirubin and all the LFT's have been spiking higher since Wednesday's prolonged seizure) and his belly more bloated and tender (again.) After talking it over with the attending doctor yesterday they drew another set of cultures from his lines, a separate from his blood and also one from his urine to see what, if anything, they may find. Something seems to have changed, we just aren't sure what exactly. He did play with the laptop computer for a short while yesterday evening and watched the movie Monster's inc. last night. He just woke for the morning today. We anticipate a relatively quiet day, though you never do know around here.
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Thursday, October 6, 2011

Updates.

I know I'm behind on updates. I've written a few but haven't had the time to go back and post them. So, this post will hold a few updates within it.

Monday:
Bruises and holes run up and down his arms and feet. They were drawing blood for blood work from the veins in his feet and ankles, to preserve the veins in his upper extremities for IV's. Throughout the weekend it was evident that he was in desperate need of reliable, central access. The amount of meds and infusions that need to be run was only increasing. He was put on the OR schedule today for a new central line and we were transported down to the OR in the afternoon. Once we arrived in the pre-op area we were so happy to see that the surgeon that would be taking care of our boy was our usual, Dr. K.

Wyatt was very anxious and scared. He hates anesthesia and he let them all know it. While waiting for Dr. K to come out to the waiting room and tell us that all went well, I noticed it was taking them longer than we thought it would. He eventually came to talk to us, though the expression on his face clearly showed that it didn't go as easily as we were all hoping. He sat down and proceeded to tell us that Wyatt's lung disease must be more severe than any of us have ever thought. His respiratory status throughout the surgery was not stable and there were times that they were unable to get any air flow into his lungs. His body has no reserve of oxygen, like you or I would, and his oxygen saturations dropped very low, very quickly. There was a big concern that they wouldn't be able to extubate him. But they got through the surgery and eventually they were able to remove the breathing tube. At that point they came to get Bryan and I and we went back to the recovery area. We could hear him screaming before even getting to his bed. We arrived to him with his O2 saturations at 79, his face very swollen and his color poor. He was hurting very badly and incredibly scared. He needed (and wanted) the bipap machine that he's been relying on for the past week. It was sitting next to the nurse but she didn't know how to work it and was waiting for a respiratory therapist. Ugh...I can do that! So, we pressed the power button and put it on him. His SAT's started to slowly climb up and he settled down from his frantic state. I convinced him to close his eyes and sleep, and promised I wouldn't let anyone near him. He's so, so frightened of anesthesia.

The anesthesiologist came over after Wyatt was more settled, looking stressed, and said they didn't expect what had happened and to let her know the next time he needs to come to the OR and she'll go on vacation!

He did ok after getting settled on his bipap and eventually we were transferred back to our room this evening.

Tuesday:
We started Wyatt on Methadone infusions around the clock last night. We weaned him off the continuous (basal) rate of Dilaudid slowly as we introduced each new Methadone infusion. He now has a "demand" dose of  Dilaudid through his PCA pump (his push button), in addition to the Methadone that's infused every few hours. With the methadone on board we actually reached a 6 out of 10 on the pain scale today. So exciting! We even saw smiles and were able to get him sitting in the tumble form chair for a period of time, playing with toys. We saw progress and clear glimpses of a more comfortable boy. We saw hope, clear as day. As the Methadone dose fades in his system and it's time for the next infusion, we can clearly see his pain signals return and he was once again more withdrawn and hurting. While disappointing that we saw the change in him, it was good for us to see as we know the the med is working as we thought. He's been wearing his bipap and still relying on its support for the majority of the day and all night, though we did trial the nasal cannula more today as we could tell that he was breathing a little easier with the spurts of decreased pain. It's been a day of progress.

Wednesday:
We had a quiet night and an overall uneventful day today. Overnight his blood pressures stabilized more than they had been, his respiratory rate steadied and heart rates telling that he was comfortable. There wasn't much to talk about with the doctors this morning. "We're staying the course" was the only instruction. Throughout the day he played with play dough, was playing on the computer for a bit and was even painting at one point. He used the nasal cannula more and the bipap a little less than the previous days. We adjusted the Methadone dosing slightly and I'm anxious to see if it makes the difference that we're hoping for. He's tired out and tucked into bed for the night. Another day of good progress.

Thursday:
After I typed up our Wednesday update my computer wouldn't allow me to "publish" the post, so I decided to try again this morning. I figured I would just lay down and enjoy another quiet evening. Wyatt was being whiny and was agitated, but I was hoping he would just fall asleep. Thinking he was worn out from the activities during day. At just about the time that I settled in and covered up, all of Wyatt's muscles began to convulse intensely and rapidly. But he seemed conscious, asking us to "make it stop." His head and hair began to soak in sweat. A couple doctors and many nurses surrounding him trying to figure out what was going on. Was it a seizure? Was it not a seizure? His entire body rhythmically jolted for over an hour total before his eyes rolled slightly, eyelids closing and he fell into a deep sleep. His body still and resting. He woke up just a short while later, hurting "everywhere." After trying our best tricks to make him more comfortable he did fall asleep and had a peaceful night.

This morning as he was sleeping we saw several of our doctors, all checking in to see how he was doing. They were all called last night to ask for any input or ideas of what could be causing the extended clonic movements that were happening. No one had any profound thoughts. Still wondering if it was a seizure or not. As Wyatt woke late this morning, he's been weak and quiet, not moving much. I asked him about last night, wondering if he had any recollection of the events. He doesn't remember anything....talking to us, his body moving so intensely for so long, the rectal temperature that the nurse took. Nothing. Which makes me feel better, in a way. I don't want him to remember events like this. And it does tell us that he wasn't as conscious as we had all thought. He's done this before just recently, he appears somewhat conscious but has no memory of the events, leading us to believe it probably is seizure activity. He'll have an EEG today to see if a focal point can be spotted where the seizures could be originating from.

To be continued...
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Sunday, October 2, 2011

Our Weekend.

Wyatt's body is tired and struggling but he's holding his own. We can't really ask much more than that at this point in time. In the course of this week our daily meetings with the doctors involved the subjects of lab values, pain control, new treatments and medications, along with the delicate conversations of hospice care and DNRs. And the range of emotions that come with each.

As I sit here typing Wyatt is laying in bed, holding tightly to his stuffed bears watching TV. His bi-pap mask on his face providing respiratory support. He's only able to tolerate removing the bi-pap (and going to nasal cannula) for very brief periods of time as his body is struggling to breath. His respiratory rate has increased further since I last posted and in response we've increased his pressures on the bi-pap machine twice today, hoping to open up the deflated, collapsed areas of his lungs. Blood pressures now also a concern, have been steadily increasing since I last posted, as well. After talking about it with the doctor we started a medication to lower his pressures, in addition to a "rescue" med to bring them down further until the medication has enough time to take full effect. It's been a struggle to keep his potassium up at an acceptable range and there were great concerns with it just yesterday, but today, after multiple infusions of potassium it appears to have increased enough we're out of the "critically low" area for now. His body is beat up, from both the infection process and the harsh medication used to combat it.

This life is a tough one, I don't think many would doubt it. Repeated hospital stays can be hard, this Summer (and now Fall) we've spent more time in the hospital than out. But as we experienced during this stay, having friends just down the hall has been refreshing and at times very comforting. When I'm feeling like a caged animal and so sick of seeing these same four walls of our room, I've been taking a short walk a few doors down to visit two other mito families that we've come to befriend that are inpatient now too. While I was sad to see them arrive, there were times that I was so relieved that they were here. I'll be excited for them when they're on their way home, but will miss the company and friendship while we stay.

Friday evening we had special visitors visit us from the Make-A-Wish foundation. While the visit didn't go as we had hoped and Wyatt was feeling very poorly, the process was started for Wyatt to receive a wish. I hope to talk with the organization early this week to plan further and clarify Wyatt's wishes more. I'll share more once things are more organized and the wish is in motion.

While our Make-A-Wish visit didn't go as smoothly as we were hoping Friday evening, Saturday was the perfect day for a great surprise! I had emailed with Maggie's teacher earlier in the week and she told me that Maggie had shared with her that she was feeling sad and was upset that Wyatt wouldn't be home for her Birthday on Saturday. I knew this weekend would be hard for her and struggled with how to handle the situation. As I was talking it through with several people that had been gathered in Wyatt's hospital room at that time, a nurse mentioned putting together a party for her here at the hospital. Wyatt would be able to attend in his bed (he's unable to sit upright) with all his gear and the nurses were willing to rearrange their schedule so that a nurse would be with him the entire time. Wyatt liked the idea and was excited that we could keep it a surprise from her! Let me tell you, it's very possible to pull a party together quickly when you have family friends that happen to be in the hospital at the same time, that just so happen to have siblings who are also friends with our children. Instant party! We talked to the best social worker in the hospital who was able to reserve us a special room for our celebration and was even able to order us cupcakes from a local bakery. Grandma and Grandpa scoured the stores for Justin Bieber party supplies and related necessities. And come 1pm Saturday afternoon most of the party goers had gathered in the room waiting for the newly double digit Birthday girl to arrive. She walked in as we all said "Surprise!" with a look of uncertainty on her face, and turning shy once she realized we were all there to see her. She rushed over to give me a quick embrace and turned right around, leaning across the bed, to give her brother an extended hug. It meant so much to her that he was there on her 10th birthday. The perfect surprise!


Thank you all for the thoughts, prayers, love and support. Each one is appreciated...we coudn't do this with out!
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