Saturday, February 26, 2011

A good week.

We started off our week with a first in the morning appointment with the developmental pediatrician on Monday. I usually don't concern myself too much with this appointment. It's a once a year meeting, if we're lucky, because she is always booked solid. However, this time it had been almost 2 years since our last appointment due to having to cancel while we were inpatient last spring. It went well. Wyatt showed off all his smarts. She talked with him and us while tyring to get a feel for the issues at hand. Since there was so much to discuss she didn't score his testing in the room with us, but commented that he was well above his age level in some areas. His difficulties lie more in the area of expressing, being able to get the words and knowledge that is in there out when he wishes, explanations, greetings and such. She feels he struggles with pragmatic speech. We didn't ask her to explain then and there, as we knew we'd have time to ask questions after receiving her report, but I did look it up once at home. It's interesting. And makes so much sense when thinking of our boy. Early on we prepared ourselves and were told that Wyatt had PDD, or was on the autistic spectrum. He's always had "quirks" but never really fit into the spectrum 'neatly.' The diagnosis disappeared as he began to develop and as more concerning issues presented themselves. But this piece that has been brought to our attention, pragmatic speech, makes sense. I'm anxious to read her full report and recommendations. And I already made our follow up appointment, the first available just as the doctor told us to ask for, scheduled for the middle of next October. Like I said, she's booked solid.


I then spent the next few days anxious and nervous about an upcoming appointment, which we had Thursday. We were meeting with a pediatrician. He works within a group of pediatricians at the Children's hospital that specialize in the care of children whose needs are more complex and critical care. Wyatt's pediatrician declared early on that she didn't know how to help, didn't know anything about the issues that were arising and backed out of Wyatt's care pretty quickly years ago. She is great with the typical childhood illnesses, well child check-ups and referring us to a specialty when needed. And we still check in every 6 months or after significant changes in his care, but with the type of care that Wyatt is requiring we need someone who is familiar talking with specialists (and won't hesitate to do so), knows the medical issues that we're dealing with and, even better, is in the hospital that we frequently visit. We had originally met this doctor back in the spring, during our extended stay at the hospital. One of his co-workers was assigned as Wyatt's doctor, but as we took up residence in Room 1 his assigned doctor did have off a few days and or was working at a different hospital. And during those times we saw one of her colleagues, which is when we met Dr. R. However, that was not the first time that I had heard his name.


Even though we had met him while inpatient, heard great things about him from other families who raved about the care they and their child receive(d) from him, I was still not relieved of these feelings. We've been disappointed by many doctors over the 5 years that Mitochondrial disease has been mentioned and suspected as a diagnosis for our boy. It left me with an anxiety, of sorts. I tend to put all my hope into these appointments with someone who we've been told is a great doctor...only to be let down and left with none of the help that we were hoping for. It can be frustrating and crushing when you're searching for help for your child. Naturally, this leaves me with an uneasiness when going into a situation similar to those that we experienced in the past. I didn't think we'd be disappointed by this doctor, but the feelings still lingered in the back of my mind.


Thankfully, it was a good appointment. We threw as much information to him as possible in the time that we had available. Certainly, we couldn't cover all that needed to be discussed and he left the room commenting about the amount of reading that's in his future, referring to Wyatt's computerized medical chart. But overall we left feeling good about the meeting. Feeling that he's capable of learning our son's body as well as we know it. Hoping that he can shed light on areas that are confusing and be the center point of contact in this medical team that surrounds our amazing boy.


We did quickly talk pain and he gave us his thoughts about where the pain is coming from and why.  We're restarting a med that was tried just a few months ago, amitryptaline, but at a much higher dose. He really thinks it will give some relief to his migraines and seemingly continuous stomach pain. His muscles are deteriorating, breaking down....and that hurts. When in a bad spell of muscle pain he did say we could try a few things to see if it would help. And he has a few more options in mind beyond what we discussed.


Beyond our appointments this week we were able to sign in to math class via Wyatt's laptop and learn with the class, like we usually try to do each week. But this time he had free time to chat to many of classmates as they one by one came up to the receiver and told him jokes that they had picked out of books. He laughed and enjoyed the time socializing with his peers. I love seeing this boy smile! His teacher also made a trip to our home to work on classwork, as usually happens, but he brought a special friend along this time as you can see by the pictures. Dot, the class pet, came for a visit. She/he is a California King snake and 3 feet long. I certainly wasn't about to hold her, snakes are not my favorite living creature, but she was kind of cute to look at as she tied herself into a knot while Maggie and Wyatt held her. Jilly hid on the steps behind the banister for much of the time that Dot was out of her home, a small glass tank. She wanted nothing to do with her unless she was enclosed in her home. I even tried bargaining with her, telling her that I would pet Dot with her if she wanted. It didn't work, but she happily stuck her nose right up to the glass observing dot in her home. It was a nice visit...Wyatt and Maggie were thrilled to see and hold Dot again! This week was a good one, visiting snake and all.





* Please keep the Agnew family in your prayers. Their sweet little girl, Maggie, has mitochondrial disease. Her parents and doctors are trying to keep her comfortable and struggling to do so right now.
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Friday, February 18, 2011

Letting go.

This week I was able to talk with Wyatt's GI doctor about the trip to Boston, new issues that have popped up and where things are right now. It wasn't a perky conversation. Truthfully, she doesn't know what to do for him. And that leaves me with an awful feeling which I've been struggling with all week.

Our boy is now draining a milky white color from his g-tube (stomach), for which there is no explanation. Where did the extreme yellow, green and even coffee brown colors go, you may ask? The Lord knows, that's what we've been wondering too! It's the question that has been hanging in the air this whole last week. I've talked with several medical professionals regarding this new change of color and not one has had any idea as to why and what would cause this change of output. If I didn't know better I would think his formula is flowing backward from where he is fed through the J-tube (small intestine) to the stomach and draining out of the G-tube. We've seen it happen before. However, I do know better...he hasn't had any tube feedings or formula put into his system for approximately 4 weeks. Only TPN. Then we began to wonder if his GI system kicked it into gear and started to do it's job, pushing things through. Still not knowing why there would be white emerging, but it was a theory, a hope. So, we tested with small bites, licks and sips only to realize our hope was wrong. It left him curled next to me, pale as could be and feeling very poorly...at times retching and trying to expel what minute amount entered his system.
I find when new, unexplainable concerns come about I get frustrated with the things that could be treated, but are left untreated because it's a challenge. Pain being the first on my list. I wish for his doctors to experience the love I have for this boy and then care for him each and every day. See and listen to his complaints, his yells, his fits of inconsolable extended sobbing because he's tired of it. He's tired of hurting. It's not fair to him, this 8 year old boy. I want to relieve him, his body, of this stress so badly. I truly hate the pain that this disease causes him.

Certainly, this is not to say we aren't having some good times when he's feeling pretty well, we do, thankfully!

But everyday there is pain in one area or another, sometimes all at the same time. While we understand the GI pain and are working to get it under control the best that his doctor can. The muscle pain, nerve pain and headaches are left untreated, beyond the doses of Tylenol that we give when it's particularly bad. This pain, these types, were noted when he was just a young toddler (as he could show us where it hurt). And we suspect since infancy, not able to tell us what was hurting him while he wildly screamed and writhed. The pain leaves him unable to ambulate, weak and needing carried throughout our home, not wanting to move, not able to participate. We've been warned to use Tylenol sparingly (no Motrin) so not to aggravate his liver which is already sensitive. This leaves us between a rock and a hard place, as you can imagine.

It's hard to treat this type of pain, we're told. Which may be true, but all we ask is that they view it as the very real problem that it is. Try to find a solution, a treatment that may improve the days. Not trying, not addressing the situation as a problem, brushing it aside for another doctor to deal with when there is no one left to deal with it is so incredibly frustrating for this Mommy!

I try to be reasonable when it comes to the medical aspect of our life. I've learned more about the medical system and myself in these past 8 years than I could have ever imagined. I'm learning that I need to be pushy at times and it's OK. I've learned to advocate and stand up for what's in the best interest of our children. I've learned when to step back to watch and wait. I've learned how to prioritize and triage symptoms in a crisis. I've learned how to be strong for my child when we're all fearful. I've learned that sometimes life isn't fair, but I won't let it stop me.

Today I'm reminding myself (again) to let go. I'm not giving up, I won't stop acknowledging his pain and will continue asking for help for our sweet child. But in these 8 years I've also learned to rely on God. Trust, have faith and love. Once again, I'm surrendering, allowing Him to take the wheel and lead the way. Trusting. It's so much easier said than done some days!

I'm learning...I'm a work in progress.
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Wednesday, February 16, 2011

Picture catch-up.

{The Cub Scouts partcipate in Pinewood Derby 2011}
The year of the fast moving and was finished at the last minute "iCar".
Maggie was looking forward to viewing. 
 His car won all 4 of its races! 
 1st place in his Den.
2nd place in the Cub Scout Pack.
 This boy was thrilled!


************************

~*~Dance and Baton twirling competition~*~
  The first one. 
 Being glitterized. The more sparkle the better.
 Her twirling team was awarded 1st place in its division. 

Unfortunately, it's not allowed of parents to take pictures and or video of the actual performances. This is, apparently, very competitive and the threat of others copying the choreography is great. Who knew?! You'll just have to take my word that our girly (and the other 4 girls of her group) did great... and looked so glitteringly cute!





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Saturday, February 12, 2011

Longest. Week. Ever.

This week was a rough one, never ending. After returning home from our shortened trip we've been having one issue after another. During the day Wednesday I talked several times with the GI department, between the Fellow and the nurse practitioner. Relaying what happened in Boston but also getting prescription orders sorted out. After consulting and polling infectious disease and several of the GI docs on service, they started Wyatt on another antibiotic, Cipro to be exact, for bacterial overgrowth. This was after reviewing the results of the cultures that were taken of his G and J drainage last week while inpatient. Both bugs found showed sensitivities to this antibiotic and we're hoping to swiftly kick them out of his system. His GI doctor also put in an order for a glucometer to test his sugars at home. This was all done just prior to us leaving over the weekend, but we were unable to sort out the insurance battles that the pharmacy was having before our departure. We were assured that we could wait and get it as soon as we returned home, which we did.

During my chat with the Fellow (Wyatt's doctor is out of the country until next week and we've been talking with one of the fellows that has slipped into her spot for the time being) we talked about what happened in Boston, our visit with the doctor, why the test was cancelled, the Fellow's lengthy talk with Dr. F while he was trying to sort everything out, etc. She assured us that cancelling the procedure was the right thing to do for Wyatt. While I knew that was the right decision, the best decision, I was also concerned because our team here was hoping for some sort of direction from that test. We haven't exhausted all options, just yet. I know that, but it feels as if we're cutting it close.

Wednesday evening, while playing with his sisters, Wyatt's drainage bag became snagged on the leg of the piano in our living room. The resistance of the drain bag being snagged quickly yanked his GJ tube right out of his belly, balloon still intact. This was a first for us! It scared him more than it hurt, I believe, he was shaking so much that he was unable to stand. We put a quick phone call into the GI on call that evening and it just so happened to be 'our' fellow, who instructed us to pull it the rest of the way out and place a g-tube in its place. Just until she could attack the IR team in the morning and get us a slot to replace it the next day. She called me back first thing in the morning, just as she said she would, and told us when to arrive. Thursday afternoon, after a lot of struggle (his anatomy is tricky,or so we're told), a new GJ tube was placed. They placed a smaller diameter size because of a back order on his current size, but we were told it shouldn't be a problem...usually.

Thursday evening we were battling with the new GJ tube, already. It was clogging on us and wasn't draining as it typically should. We eventually started preparing his TPN, giving his meds and getting the kids ready for bed. As Bryan began flushing the one lumen on his central line it sprang a leak, dripping saline. We tried our best to hep lock the line, as it dripped out as quickly as it was pushed in. We called the nurse on call for the evening to ask if we should go in now or if we could clamp the line above the leak and wait till morning (the other lumen was working and his TPN was able to run through that). After explaining the type of line and how it was leaking the nurse decided we could wait till morning.

First thing in the morning, after getting Maggie off to school, we made a few calls and were instructed to head to the ER. We spent the entire day in the ER yesterday, waiting to be added on to the end of the day's schedule. Luckily, GJ tubes and PICC lines are both done in IR...and he's sedated, or at the least feeling druggy. They re-wired the PICC easily and started working on the tube, trying to figure out why exactly it wasn't working like it's supposed to. They now had the larger sized tube and were hoping to "re-wire" it over the one that was placed the day before. But as they were looking, the tube they just placed the day before was not laying as they would like. It had curled slightly and they decided it was best to start over with placing the new one. It took a long time and was not easy on any involved. His anatomy wasn't cooperating, in the least. Bryan and I sat in the waiting area watching as the patients and their parents left, one by one, followed by the hospital staff. Leaving only Bryan and I, along with the cleaning staff behind. Left to watch the radiology sign above the entrance to the room that our boy was in, light on and off as they would use the machines. But, eventually, the radiologist came out of the room and explained to us what was going on. Typically, we would be in the room with him during a tube change, just like the day before, but we are not allowed in the room while placing a PICC line, as it's a sterile procedure (or as much as it can be). I hate waiting on the other side of those large, heavy doors.

But all was finished, we waited for our discharge paperwork and we were then on our way out of the hospital for the day. Rushing to Jilly's dress rehearsal for her baton class, hoping to make it before it ended. Grandpa, thankfully, was able to get her to practice on time. We missed it, by minutes.


Longest. Week. Ever.

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Wednesday, February 9, 2011

Boston.

Home again, this time from our trip to Boston.


Our journey to was adventurous...a quick, spontaneous trip through the Bronx, NY (not intended), free face painting at a fast food restaurant in Manchester, CT and our mini Super Bowl 'party' in Boston, MA. Our hotel room was on the 11th floor which was thrilling for these three children of mine. We found them giggling together and playing "iSmash", which they created themselves. Or so I'm told. Looking from the windows and "squashing" the people walking on the sidewalk with their finger against the window pane. It was, apparently, funny and entertaining.


Our appointment with Dr. F was at 9am on Monday morning. We arrived slightly later than 8:30am and waited. We were checked in, Wyatt was weighed and his height measured and we were taken to the squarely built exam room. The doctor was stuck in a procedure and it was quite some time (10:30am) until he made his way in to see us. By this point Wyatt's iPod battery was low and we were all getting antsy. The doctor came barreling in the door, moving and talking faster than I've ever witnessed before. I would guess he had several cups of intensely strong coffee! It made me chuckle in disbelief.


Dr. F was nice, pleasant. He talked and moved quickly, much like a hummingbird. And had a thick accent that made me have to think twice about what he was pronouncing at times. Our first, very brief, visit with him left Bryan and I looking at each other as if to say "Did you catch all that?" It was an experience unlike any other that we've had with a doctor. We were sent up to radiology for an x-ray, where we waited more. We then returned down to Dr. F's office and back into the exam room where he met with us again. He began to explain the procedure in more detail, we asked a few questions, expressed concerns and relayed some of Wyatt's history that Dr. F was unaware of. It was disappointing to realize that he didn't know much of Wyatt's medical history, which is rather complex. Some of the medications that he mentioned as possibilities to help we were previously warned of and told not to use because of the potential of impacting another affected area of Wyatt's body. As we raised those points to him, it was clear to us he needed to know the situation at hand much better than he did before any possible treatment could be spoke of. It all comes back to needing to look at the whole child and not just one system in this case. He then pulled in a nurse to the small room that we were occupying, and said we should probably talk to the anesthesia team today rather than the next morning. He quickly exited, leaving us with the nurse. She was slightly confused and asked us why she was to contact anesthesia, at which point I relayed his previous complications related to anesthesia and the list of recent medical concerns that have come about...the look on her face said it all, really.


The afternoon was a blur of confusion, quite frankly. We rushed from lunch, back to Dr. F's office, only to then hightail it to the other side of the sizable and complicated building to see an anesthesiologist who had no records or any medical paperwork informing him of Wyatt, other than his name relayed over the phone

As we went through the list of standard questions on the doctor's small piece of paper, categorized by body systems, it was quickly brought to his attention that this would not be an ordinary, nor routine, case. He initially tried to reassure us that the hospital had a qualified team of anesthesiologists and even several that feel comfortable with Mito kids, which I do not doubt. However, it was decided that they needed records to review, testing results and a firm understanding of our boy's history before they could put him under anesthesia safely...and we agreed completely.


After more waiting and more trekking across the confusingly large hospital, at which point we got lost and ended up in an area that I'm fairly certain we should not have been allowed to be in, we entered Dr. F's office for the last time that day. Leaving our contact numbers for him, just in case. We were done. DONE. We were leaving the hospital and walking back to our hotel room, 7 hours after arriving for our 9am appointment.


We decided to cancel the antro-duodenal manometry test. Unfortunately Dr. F wasn't able to, or didn't answer the questions that we needed answered. He was not aware of Wyatt's history and it showed clearly. It was a disappointing situation. We called to cancel the following days procedure and were able to talk with him directly. He assured us that he understood our concerns and made it clear that we can always reschedule should we feel it's best.


The day was draining emotionally. We settled in for the evening and decided to order the movie 'Tangled' from our hotel room TV. It was just what we needed. Time together, family time.

More to come...
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Thursday, February 3, 2011

Home.

Home again, home again, Jiggety-jig.

The bleeding within Wyatt's GI system appears to have stopped. After receiving several shots of vitamin K in his belly (not fun) his clotting factors are looking better. We will now inject more vitamin K into his TPN daily with the hope that it'll get his numbers back to normal. He was sent home with IV protonix, as well.

We haven't received the results of the Echo or EKG just yet, as well as the cultures of his G and J tube drainage. I plan to call tomorrow and ask if they're back yet. The doctors didn't feel the need to hold up discharge on account of those pending results...and we certainly were not disagreeing.

Our Boston trip is still on. The GI doctors here have all agreed and said that their job is to "keep him stable" so that we can get to Boston. I'm not sure how I feel about that right now. Is he really too complex for them to weigh in on the situation anymore? I'm anxiously looking forward to meeting with Dr. F. To see if he has any new insight, ideas, tricks up his sleeve. But meeting new doctors is complicated. Trying to relay accurately to the doctor so that they understand the medical history, our family dynamic, our feelings and thoughts, our goals. Hoping he'll talk with us and not at us. I'm unsure if going under anesthesia and doing the manometry is something that should happen right now. And have questions that we need answers to before going through with it...what will we get out of it? How will his treatment change depending on the results found? Is the risk of anestesia complications worth the benefits of this test at this point in time? And we want to make known that we don't want to (and won't) put him through this test if it's just for knowledge....if there is not a helpful treatment plan beyond what we're already doing. I have numerous thoughts and concerns running through my mind. For all I know, Dr. F may agree with our concerns with anesthesia at this time and decide to wait on the manometry. And we won't know until we get there and speak with him.

Lots of questions, lots of emotions.

For right now I plan to busy myself re-organizing the medical supplies to accommodate the new additional bulk. Wyatt sits comfortably watching one of his favorite shows, Minute to Win it. Cheering. He's very happy to be home, as am I.

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Tuesday, February 1, 2011

Back again.

Back in our trusty wing of the hospital. Wyatt was admitted to the floor today. Over the weekend we started seeing specks of blood throughout his g-tube drainage. Sunday evening there were clots and he's had increased pain. I called the GI office first thing Monday morning, relayed what we were seeing and waited for a return call from the doctor. Monday afternoon he started worrying me a bit with his pale face, more pain in his belly, legs and head. He wasn't looking good and I was just waiting for him to spike a temp. After not receiving a call back throughout the day yesterday, I called the office again first thing this morning. Within that phone call I found out that the nurse failed to forward the message to the doctor the day before. Nice. The doctor promptly called me back after getting this "new to her" message and quickly decided he needed to be admitted to figure out where the blood is coming from and to asses the situation.

The blood is not draining out in copious amounts or even measurable beyond counting each small clot, but the concern lies in the fact that it's there and it shouldn't be.

He never did spike the temperature that I was waiting for. He's been perky and happy since getting here, though still saying he hurts. We met with the doctors to go over their thoughts and the plan. They would like to do a scope (endoscopy/colonoscopy), however we're travelling to Boston to see Dr. F, the motility guru, first thing next week and they're concerned with putting Wy under anesthesia twice in one week. He has a history of anesthesia complications and, truthfully, with where he is at overall right now, we're even hesitant about the anesthesia to do the manometry testing next week. We plan to and have been encouraged to talk with Dr. F about this at our consultation on Monday morning.

While the doctors were examining Wyatt they noticed a heart murmur. This would be new, he does have bradycardia which is thought to be caused by his autonomic dysfunction, but no murmur. An EKG and echo have been ordered, abdominal x-rays to see if/make sure nothing is completely obstructed and a slew of blood work. His liver is also large, but we already expected and knew that to be the case.

The first line of defense is to start him on protonix through his central line (a drug to suppress the acid his stomach will make). During the last admission they stopped his prevacid and decided to swap it out with zantac injected into his TPN daily. This was in an effort to reduce the volume of meds he receives through his gut. Now, the initial thought, or wonder, is if by stopping the prevacid it may have irritated his stomach, which could be the cause of the bleeding. They won't really know without doing a scope, but we can start the protonix and see if it helps. If he starts putting out more blood or if anything changes then we'll go to the next plan.


* The doctor just poked her head in to tell us that one of the labs to test his blood clotting was abnormal and he'll be getting Vitamin K shots. We asked why his clotting factors were off and were told it's due to his liver disease.
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