Friday, July 29, 2011

Life beyond the germs.

This afternoon I opened the front door to look out onto the porch and I was greeted by our friendly UPS delivery man placing boxes upon boxes in front of my door. My children, like many, get a little hopeful that any mail or package that may arrive at our residence is a surprise or something directly addressed to them. Wyatt pipes up eagerly asking if any of the numerous boxes contain anything that isn't "medical stuff" for him. I respond, "nope" while he comes back with an exaggerated whine, "Awww." Jilly then asks if she had any Birthday cards in the mail. I quickly look and then begin explaining that her Birthday is still a month away and that it may be a few weeks before she gets a card in the mail. "Awww!", she so similarly exhaled. I have a feeling I may be experiencing the same situation daily for the next month with her. She's understandably excited for her big day!

As I sit here now Maggie is practicing her piano assignments in preparation for her weekly lesson. Wyatt's saying something about his butt and Jilly is retorting with a drawn out girly "ewww!" And I'm...procrastinating.

There is a large box taking up space on the table half opened, filled to the top with "medical stuff" that need a spot of their own. Six other boxes stacked next to the door waiting for me to sort through them and put the items in their appropriate spots. And another delivery scheduled to arrive tomorrow. Our newest piece of medical equipment, which was brought to us today, a refillable oxygen concentrator, pumping a compact green and silver colored oxygen tank full of compressed air. We've always had an oxygen concentrator, but we now have the ability to refill the portable tanks as needed. I don't think excited is the best word to use, but we do get a little enthused about this type of thing. It's the little things! I look at it as one less phone call that I'll need to remember to make to swap out empty O2 tanks for full.

Our days have been filled with a flurry of activity between the boy's care, general daily occurrences and places to be. We sat down the evening we arrived home and skillfully created a med schedule, organizing the jumble of doses and times. The following day I typed up a long list of all the medical contacts that we need. We had a list already, but it's slightly out of date (about a year old) with things scratched out and new names and numbers now written in the blank areas. So, in an effort to feel some sense of order in all that is happening I felt the need to create a new organized and more accurate list. When in doubt, I at least have a straight forward list of names and numbers of people that may be able to help.

Wyatt is doing well, in his own little way. We're home...that's close enough to "doing well" for us, anymore. I'm certain his billirubin levels have dropped lower since the last time it was checked, as his color is looking much better. He's still "yellowish" but not terribly noticeable. Cathing has become more routine and we've all adjusted to the thought and process a bit more. It does reduce some of his discomfort greatly, which is a great thing...quality of life. Our nurse arrived first thing this morning and set us up with a "Y" connector on the one lumen of Wyatt's line, providing the ability to run saline continuously throughout the day and meds when needed (along with the TPN going through the other lumen). And speaking of a nurse, we've recently taken a big step and applied for private duty nursing. I'm not sure how I feel about it, just yet. Our biggest goal in doing this is to have Wyatt attend school, with his friends and classmates, at the least one day a week when possible. That may translate into a half day and some weeks none at all, but I really want to try. He's like most children his age, he wants to interact and make friends. He wants to sit in a classroom and feel just like everyone else...to learn, laugh and talk with children his age. I know many will wonder why we would pursue an environment that is known to be riddled with germs. Germs are not our friend...I am well aware! But I also know we need to live life around those pesky germs, just as we try to achieve with all other aspects of the boy's life. And that's what we'll try our best to do. Quality of life, he needs it and we all want need it for him. I'm sure there will be a time of adjustment when having a nurse around for many hours a week, but it may be a wonderful thing...we'll see.

This evening we're all happy it's the end of the week and are looking forward to spending the weekend together. Happy Friday, my friends!  
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Tuesday, July 26, 2011

Home again.


The title is true...we're all present and accounted for. The children wasted no time jumping back into their typical sibling interactions. We came home to a new med schedule that needs reorganizing, new supplies that need their own spot in designated areas and even more to do than when I walked out of the house last week. But I have no doubt that with a little time we'll settle in to the routine and re-adjust once again.
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Sunday, July 24, 2011

Celebrations in Room 1.

The Birthday boy awoke with smiles yesterday morning, gazing around at his decorated room. At the end of the day I asked if he had a good day and he responded, "I didn't think it would be very fun, but it was!" It may not have been what was planned, but we made the best of it.

Friday afternoon the grandparents and the girls took the previously planned trip to Baltimore to pick up the boy's birthday cake from Charm City Cakes bakery. As Wyatt's diet became more and more limited to the point we're at now (nothing) his interest in shows about food, cake in particular, heightened. He enjoys spending the afternoon watching the shows that feature bakeries and large amounts of cake...Ace of Cakes, cake Challenges, Cake Boss, Cupcake Wars, etc. Months and Months ago he asked for a cake from Charm City Cakes and was really looking forward to visiting the bakery. Having the opportunity to look around the bakery and meet the people who he so intently watches from our living room. Unfortunately, it just wasn't meant to be and instead we were located right here in room 1. But we left the decision up to him if he still wanted the cake for his birthday or if we should postpone the order until he was feeling up to visiting the bakery himself ; his decision being that he wanted the cake on his Birthday. Just a few minutes past 5pm I received a picture in a text message from Grandma, a photo of the Charm City Cakes crew with hands waving, our girls sitting with them. So sweet! The group couldn't have been more kind, from what I'm told. And the cake was delicious! Wyatt had a small lick and nearly melted back into his bed with an audible "Mmmmmm," making this special day that much sweeter.



The day was full of visitors, smiles and presents. The first group of party goers arriving in the morning and the second late in the afternoon, spaced far enough apart for a good nap (for one of us). Wyatt opened presents, smiled, laughed and made a wish as he blew out the candle on top of the cake...exactly what a birthday should include.


He was feeling fairly well yesterday and the same today. He's a bit tired and still has pain that is being taken care of with a particular medication. But when that's in check, he seems, dare I say it, even kinda perky. And the best birthday present of all, the cultures taken from his line have been negative! The appropriate antibiotics are being given and everything is under control. His Billirubin level has decreased a bit too, which we can visibly see. We've been adjusting to the cathing process and realizing the degree of his needs. It's never easy to add another area of concern in to the mix. But he's verbalized how much better it makes him feel, which really helps to hear. I think we still have some things to sort through with that area, but we're on the right path to getting it all figured out.

For now, we're planning on a quiet evening. Wy is snuggled in bed, resting and watching TV, while Bryan is relaying the daily report of events to Grandma on the phone. And we're all looking forward to being home again soon!
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Friday, July 22, 2011

9 years ago today.

9 years ago today I was sitting in a hospital room, much like I am today. Though, at that time I was just 26 weeks pregnant. I was frightened for my baby, missing my baby girl who was at home growing each day and my husband who was juggling many roles. I was confined to my bed trying all the tricks that the doctors could come up with to keep this baby boy inside my belly for as long as humanly possible. It was nearly two weeks since I had come in to the hospital and it didn't look promising for me to hold out much longer. The neonatologist had come to talk with us a week earlier about what to expect and the options that we had. I had read and reasearched anything and everything I could get my hands on about premature babies. I don't believe you can ever be truly ready for an experience such as was about to happen, but I suppose I was as ready as I was ever going to be.

Wyatt's doing well. "Well" being a relative term, of course. He's playing a game on the iPad and watching TV as I type. He's been sleeping more today, but alert and interacting when awake. All and all it's been a pretty quiet and low key day.

However, tomorrow may be a different story. Tomorrow there's going to be a party in room 1. Not just any party, but a birthday party for the boy who is laying in the bed to my left. That's right, my friends, tomorrow is a special day....Wyatt's Birthday!

I've been thinking about the events that happened 9 years ago a lot today. Recently feeling many similar emotions that I did at that time, but slightly altered. We've all learned along the way, matured and adapted to all the changes that the past 9 years have thrown at us, celebrating every 12 months. Bryan and I can't help but feeling as if it's an accomplishment, a blessing....another year, another Birthday. He made it...we made it!


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Thursday, July 21, 2011

Second verse, same as the first.

After my last post we spent more time in the ED for cathing before getting in to see urology first thing the following morning, where we were taught how to cath the boy ourself. Upon arriving at our appointment Wyatt was feeling really crummy. His pain level was increased and he was looking very poor. Dr. R was tracked down and called. We were told to finish up the training and if the cath didn't help his pain then we could head on over to the ED for pain meds, labs and cultures from his line. In the end, we came home yesterday late in the day...it took a little convincing for the ED doctor to agree, but really there was not much more they would have done for him that we don't already do at home.

This morning as I was enjoying the peace that comes with all three kids still snuggled in and sleeping in their beds, the phone rang. I answered and was a little confused when I heard the voice on the other end of the line. It was Dr. R, calling us in to the hospital yet again. The cultures came back positive and is growing both gram positive and negative bugs. So, we're here. Hooked up with antibiotics and all the usuals. His labs are all over the place. His liver numbers are continuing to rise, including billirubin. He's tired and hurting, but has not spiked a temperature as of yet ( which doesn't mean much...but I'm happy that it's not 107 degrees.)
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Monday, July 18, 2011

An update.

 
So much has been happening these past few days. We started off the weekend with an electrical "emergency" in our home that required immediate attention and an electrician willing to work for 10 hours on a Saturday. After a long day and many dollars the issue at hand has been fixed, thankfully. While the electrically skilled professional set up shop in our basement the boy was feeling pretty poor. A week ago he started to become jaundice, he's now a very impressive shade of yellow. While his liver isn't too happy at the moment he was also having a considerable amount of pain. Throughout the day Saturday he was asking to go to the hospital, stating that he was feeling "really bad." We contacted the doctor for advice and began relaying what had been happening. We were teetering on that fine line...do we take him to the hospital or do we try to wait for a clear sign of what exactly was causing him such discomfort. With the doctors advice that evening we eventually made our way into the Emergency Department (ED). After talking things through with Dr. R we were able to pinpoint a cause of concern and possibly a source for some of his pain....the bladder. Wyatt has had an ongoing issue with this area. For quite some time now we watched as his function began to deteriorate gradually and just the act of peeing became very difficult. When we arrived in the ED and told them why we were there, many of the staff was first concerned by his color, each asking inquisitively if his "coloring" was normal for him. I replied "well, noooo", but assured them that it's already being addressed, and not why we were there. They eventually cathed our boy to relieve his bladder of the pressure that was increasing. And with that the pain did decrease significantly. In fact, we have not seen him rate his pain a "2" on the pain scale in quite a long time...he was much more comfortable with the cath in. We eventually came home in the wee hours of the morning and crawled into bed. It was a long, long day. Yesterday was more of the same and today, as well. We have an idea of the upcoming plan, the doctor said he would be calling the Urology office this morning and that we need to see them ASAP. We're now just anxiously waiting to hear when. Hoping for sooner rather than later, as he's struggling to stay comfortable. In the mean time we've cut out the daily saline bolus that he gets, as it seems almost torturous to load him up on fluids when his body is already hoarding what it has.

We did have an actual appointment with Dr. R last week. I can't believe that was just last week. It seems long ago, already! Of course, number one point in our discussion was the boys overall color, yellow. He earned himself labs and an ultrasound after the appointment. We also discussed a few things that we've been thinking about, one in particular being a new study drug, EPI-743. The FDA just recently expanded the trial to include a larger spectrum of patients. We were aware that Dr. R may have to do some convincing and hurdle jumping to get the approval due to several issues of Wyatt's, but he did say that it may be possible to get under compassionate use. I'm not sure if this drug will do much for our boy...we won't know unless we try it. But I would love to think that it would and hope that it may. We originally approached the subject asking Dr. R if he felt this drug was "worth it." Clearly, Wyatt's worth it, but I do question if the drug will benefit him. For some reason I just don't have a feeling one way or the other with this one, which is unusual for me! For now I think I may need to take it for what it is....hope.


Last week we also had the chance to pick up the boy's new high/low activity chair, the x:panda. It's very nice, equipped with all the supports and has plenty of adjustability for his comfort. The tray is very big and will be really nice when working on school work....or playing with play doh. The pictures may not reflect his true feelings about the chair, he's been feeling pretty crummy. But I did get somewhat of a forced half grin, that's gotta count for something! So far, the x:panda gets two thumbs up from us!
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Tuesday, July 12, 2011

Family.

We don't live too terribly far from our family, though it's a distance that can be a bit tricky when toting the amount of medical supplies that we must have on hand when away from our home. Unfortunately, we don't see our loved ones as often as we'd like. The reminiscence of my childhood days living next door to my grandparents and Aunt, Uncle and cousins is a pleasant one. Playing with those cousins and visiting each others' homes every day. A lot of our time spent at my Grandparents, outside. Swinging on the swing set, riding bikes through the large fields and around in circles on the black topped driveway, often playing games of hide and seek, tag, basketball, wiffle and kick ball. Picking fruit from my Grandfather's fruit trees and setting up small, makeshift fruit stands just at the end of their driveway, selling the juicy fruit that was in season at the time. Coming inside for drinks of juice and to snack on the hard pretzels that were always tucked inside a large glass jar sitting on the counter.


This weekend we made a point to go "home" and visit. My Brother and his own family now living in the home that we grew up in, originally owned by our great Grandparents and passed down through the family. Still sitting beside my Aunt and Uncle's property, though two of the three cousins have since grown, moved away and now have families of their own. And the youngest away attending college through the school year. My Grandfather living just next door, in the home that he built with his own hands many, many years ago. When I look up to the fields I can still picture my Grandfather driving his large, red farm tractors as we swing on the swing set smiling and waving to him.

The fruit trees now old with knots and large, solid branches...if trees could talk, I'd love to hear the stories those trees could tell. Plums, apples, pears...each year us kids would be playing outside when my grandfather would holler to us to start picking the fruit and "get to work!' My grandfather was a hard working man. He was tough and firm, but underneath the rough exterior was a soft heart.


Now, as I return "home" the surroundings look a bit different. The home is updated and remodeled. The fields now filled with vegetable crops and chicken coops. The drive way where we played now cracked and weathered. My Brother's large, green tractor sitting nearby. Our own children now swinging on the swing set, learning to ride their bikes through the fields, climbing the fruit trees and playing with each other. It's now changed, but it still feels like home. :-)



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Tuesday, July 5, 2011

Wishing For the Magic Answer.

This weekend Maggie came home from her week at camp. It seems she enjoyed every minute of her week! She's been enthusiastically sharing the details as she remembers them. It's been so fun hearing about each activity, person and experience she encountered throughout the time she was there!


Wyatt has been struggling. His back has been giving us a lot of trouble. Well, truthfully, it's now the entire "core" of his body, front and back. Touching him causes him to grimace in pain and gasp. We've been exchanging emails a lot with Dr. R and trying all that we can come up with. I really don't know what to do! The pain meds and muscle relaxers initially take the edge off the pain, which helps him to feel well enough to get up and do something for a short while, but the extra activity then leaves him crying for hours at times and finished for the rest of the day/evening, wincing and gasping every time he moves. The medicines effect wears off well before the time that we can give him more, which leaves him laying in a puddle of tears and great pain. I wish I knew why his muscles are reacting like this. These spasms are intense and so painful. His body twists and tries to move in directions to help release the tension within the muscles that are contracting tightly, but with little help.


He feels best after a restful sleep, when his muscles have the most strength and "energy"...as his core muscles begin to work to hold his small frame they start to spasm and cause the most instense pain. Like I relayed to Dr. R, his legs and arms have always reacted in the same way. There has been no doctor to really explain why...it's just something Wyatt's body has always done. The pain that comes with this has long been a source of frustration for me. We've always been told there is nothing we can do. Now, of course, with his extremities he could more easily rest by not using them, but the core muscles are always working to support ones body. And this pain is more severe than that which happens in other areas of his body. So, what do we do?! I don't know. I wish I had the magic answer.


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