Tuesday, August 30, 2011

School days.

I will update soon. But for now I'll share the snapshots from the first days of school. Enjoy!

 


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Wednesday, August 24, 2011

Blood...it does a body good.

After being pumped full of blood products, his urine looking a particularly beautiful shade of clear yellow (Add that to the list of things I never thought I'd say! After seeing various shades of red flowing from the boy for over a week...yellow pee was indeed beautiful!), his lips plump and extremities warm to the touch (and pink!) we were able to leave the hospital yesterday afternoon.

After some go round about the boy needing/not needing blood on Monday and us sitting in the middle trusting that these medical professionals do indeed know what their doing, one doctor decided he couldn't move forward without getting the clotting issues in check. The lab results that were getting the most attention were his low hemoglobin and platelets, in addition to the PT/PTT showing a prolonged clotting time. I believe the biggest concern was the PTT showing the increased clotting time in addition to his platelets being low, also affecting the body's ability to clot. His hemoglobin was sitting on that fine line of certainly low, but technically one or two points over the line of absolutely needing to transfuse. These issues are not new to us or Wyatt's medical chart. You may remember he's had a few periods of bleeding and/or clotting issues that required interventions within this last year. His liver disease being the initial blame for the first times, later infection taking the hot seat and this one we didn't exactly get an explanation for (yet).


What I do know is the boy is feeling really good since receiving the transfusions! He's happy, engaged and motivated. Since receiving the blood products we have had not one complaint of a headache, which for those who know Wyatt know all too well that's one of his biggest complaints of pain when his body is struggling. It's been difficult to get his head pain under control for quite some time now...until yesterday. He's holding on to the complaint of belly pain and he's annoyed with the tape on his thigh that's holding the foley catheter to his leg, but that seems more minor to how he had been feeling. His mood has been pleasant and relaxed. He's now actually warm (not continuously covering himself with blankets), even down to his hands and feet! And one of the biggest things, I think, is he's sleeping a few hours less and he's wanting to move. He asked this morning to go outside to play. (!!) And that we did, in the backyard he walked through the grass with his walker and played with the girls for at least 30 minutes until he was asking to come in to rest. The change in him is great. We haven't seen this side of our boy in quite a while...weeks, possibly even months! Waking up happy, more comfortable than he has been in quite some time, talkative and with energy makes for a very good day in our home.









* I didn't have my camera nearby, but had to snap a few pics with my phone to show off this great morning!

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Monday, August 22, 2011

Today.

We arrived this morning, ready to figure out the mystery that is our boy's extremely bloody urine. He had the docs a hoppin' and coming up with the best plan of action before proceeding with the scheduled procedure. Fairly quickly it was decided that he needed blood, platelets and FFP. His coags (blood clotting abilities) were not ideal, in fact we were told they're "way off". His hemoglobin and platelets both low, as well.

Once the blood products were ordered and started we were able to move forward with the original plan...they did find that there was a very small area in his bladder that was irritated and bleeding. In anyone else, such an area wouldn't have led to the amount of blood he was losing, but when coupled with his body's inability to clot it makes for a very different situation. The good news, though, is the area at fault was cauterized and the bleeding has appeared to have stopped.

However, after the procedure we were escorted back up to "our" wing of the hospital yet again. We're now camping out here for the time being...hopefully not for too long!
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Saturday, August 20, 2011

A Siblings Point of View.


This weekend has been dedicated to collecting school things in preparation for the first day of school that is exactly one week and 2 days from today. Not that I'm counting!

It's time. Specifically for the oldest. She's ready. I'm ready. This week we received the highly anticipated letters from the schools stating what teacher each of the children will have and a list of supplies needed to start the school year. Directly after receiving said letter my big girl grabs the phone and starts calling all her friends and asking who they have for a teacher this year. Thankfully, one of her "besties" is in the same class. Or else I'm certain there would have been a bit of pouting around the house for quite some time!

Maggie and Wyatt are incredibly close in age, in fact for a few months yet they are both 9 years old. However, now in some ways it's as if they're years apart! Maggie has changed so much this year...physically, socially, intellectually, emotionally. It's all changed. The changes in Wyatt's health this past year has been very hard for our girl. These two have always been nearly inseparable, best friends. For most of their years she would proudly refer to themselves as twins, as she often heard others comment that they're "Irish twins" because of their age gap. Unknowingly, she's has been the best therapist this boy could have ever had. The changes in Wyatt's health has been hard on us all, Jilly included. But Maggie understands a lot more than Jill, and even more than Wyatt, I believe. She's much like a sponge, this one, incredibly smart and always thinking. She asks questions and expects answers. We answer as much as we possibly can. Concerned for her Brother, she recently began to ask the particularly tough questions that are most difficult to answer. "Can he die from Mitochondrial disease?" As she's asking, I believe she already knows the answer and it appears she's just looking to see if we'd tell her the truth. It's not easy to do so, but we're truthful (in an age appropriate way).

She's trying to understand Mitochondrial disease, but unfortunately it's just not something that's easily understood by anyone. The particularly hard part, as her parents, is to know that she understands enough to be scared about the same things we are. She's experienced in this medical life...she's often laid beside her brother holding his hand and talking him through situations that cause him great anxiety and/or discomfort, has run to get me supplies when needed, has been left at home with grandparents not knowing when her Brother (or I) would be coming home, tagged along to long doctor appointments and has sat in the hospital for hours waiting.

 As she grows older she's begun to express her emotions about "our life." She, like many other girls, just wants to be like everyone else. But this part of her life is unlike any of her friends in our community. It's tough! She holds some anger due to the circumstances and dislikes the hospital (besides the gift shop..she enjoys the gift shop!) and is determined not to "like" any of the doctors that may care for our boy, as she revealed that she somewhat blames them for our needing to be there so often. She understands that it's not any one's "fault" and the doctors are only there to help and would rather we be at home too. But as she says "it's just how I feel." We often hear "It's not fair!", and she's right, it's not fair. This life is tough and I trust in and rely on my faith to get me through these days. I can only hope that talking about my trust and faith in God will help her to learn to trust and develop her own strong, loving faith along the way. Emotions can be so hard to deal with no matter the age, but I can't imagine dealing with these feelings as a 9 year old.

Please pray for our girl, that she may better understand and sort through these confusing emotions, leaving behind the anger and blame. That she's able to develop her own relationship with, and trust in, the Lord our God; learning to accept this "normal" that has become our life and love, even those assisting us in caring for our boy.



I do think this parenting gig gets harder as they get older!
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Thursday, August 18, 2011

Oh, this crazy life.

I suppose I should first start off by saying that we did make it home this week, with another round of antibiotics ordered. The week has been a bit chaotic and I've been meaning to share several times now, but I just was unable to find the time. This may be brief, but know it's with all the energy that I have left this evneing. We initially made it home only to be emailing and returning the following day for an "emergent" ultrasound and appointment with the urologist. The boy's urine is once again blood filled. Thick, red blood and plenty of it. Not good! So, we trekked back to the hospital with 3 very disappointed children. We had previously planned to make a quick trip to the beach that day, a last minute getaway. We all were looking forward to it and were so pleased to be out of the hospital in time to enjoy a little fun. But I suppose it just wasn't meant to be. By the time we arrived home from the hospital (again), we were just happy to be returning to our own beds for the evening.

Today brought about more concern. His temperature rising, a terrible increase of pain and a miserable, miserable boy. I felt as if I was emailing back and forth with doctors/nurses and/or talking with them on the phone continously. Just waiting for the moment that we needed to travel back...but he somehow escaped that path for the time being. I gave him meds to help with the the pain which in turn made him vomit and retch. But eventually, as they did begin to take effect his temp dropped a few points and pain decreased just a couple numbers on the pain scale, as well. I'll take it...no matter how minute it may seem, it counts! We made the decision to place a catheter and leave it in place, allowing his bladder to drain continously. For whatever the reason (the urologist wasn't able to tell us why) he's considerably more comfortable this way, and that's very important! Wyatt's been placed on the OR schedule for Monday to check out that urological system of his and see if they can find a reason for the continous bleeding. Tomorrow brings us back to the hospital for a pre-op appointment and more blood work.



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Sunday, August 14, 2011

Again.

We're nestled into our favorite wing of the hospital once again. Yes, it's true. We came in yesterday because Wyatt's urine was filled with blood, resembling a thick red wine. Gross! He had "the look", signaling that his body was struggling in one way or another. They drew cultures...the central line culture is positive.

It was one week to the day (Saturday) since finishing the final round of antibiotics from his last infection when we found ourselves sitting in a very familiar spot...again. I have very few words at the moment.
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Thursday, August 11, 2011

August.

It's August already, can you believe it?! The school year will be starting in just a few weeks and we'll be thrown into the chaos that comes with catching the bus every morning and adjusting schedules once again. I don't know if I'm prepared to put the littlest on that large, yellow bus and not see her for an entire day for 2-3 times a week. I'm going to miss these more relaxed summer days with my favorite trio!


Our school district switched up their kindergarten program this year. Instead of the well known half day/every day schedule or even the up and coming full day/every day trend, this district decided there was a need to throw a third option into the mix, full days but only 2-3 days a week. Two full days with an alternating third day. To add a bit more to the new system, there are also two groups. Group 1 will attend Monday and Thursday, with alternating Wednesdays. Group 2 will attend Tuesday and Friday with alternating Wednesdays. Then there is the group of parents that agreed to transport their children every day (the mid day busing budget was cut, apparently) for the half day program and the other group of children that will attend full day every day, when needed. I'll be the first to agree that options are appealing, but holy holy! I can't imagine all these different schedules making it easy for the teachers, not to mention us parents trying to figure out what days to send our children. Just imagine a morning that we're scurrying around the house trying to healthily feed and appropriately clothe the students, while making certain that the correct library books and homework is in their backpacks as the bus is pulling up to the front of our home....and now trying to determine if this is a day that #3 should be getting on the bus or not. No pressure!


Our big girl is looking forward to seeing her friends on a daily basis and settling in to another year of school. And the middle man is eager to see his Cub Scout den regularly, once again. And as soon as I figure out the days that she's supposed to be there, the littlest will be ready for Kindergarten too!


We've been laying low these days, enjoying our time together. "Family time", something that can be so simple, yet so significant! Since my last post, our boy has been teetering between a slightly yellow and a clearly yellow coloring. The shades of color seem to vary depending on the day. And how his body is feeling fluctuates just as much. He has moments that he's motivated to move about and play for a short while. But he enjoys most snuggling up next to one of us and watching movies or playing a game. The Xpanda "activity chair" that I previously posted about has been a great addition into our home! The support that he gets from the harness system helps to sit those floppy, noodley muscles upright for longer than he can sustain himself these days. The tilt and recline options help to position his body, taking pressure off of areas that are hurting and/or helping to support areas that may be fatiguing and becoming a bit of a struggle to hold upright. The tray is large enough that he has plenty of room to load it up with toys and other activities. The other day he asked that I sit his Tech deck ramp and skateboards on it for him to play with. I was doubting that it would fit, but he was right, it most certainly did. And he didn't hesitate to tell me, with a smile, that he knew it would.

At this point in time, we're soaking up the dwindling summer days and packing in last minute summer fun, while beginning to gather the needed supplies (x 3) for the impending school year. The summer is flying by!
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