Tuesday, June 28, 2011

Summer Camp.


Sunday we dropped our big girl off at her residence for the week...camp! She chose equestrian camp this year. She's taken riding lessons and loves horses. She was excited to be "on her own" for the week, but was a bit anxious as the time to drop her off came closer and closer. Making sure that we promised to tell her if Wyatt should need to go back to the hospital while she was gone. She may not admit it openly often, and certainly not to her little brother, but she worries.


When we arrived she was all smiles and appeared to be feeling more excited than any other emotion. She was given the number to her cabin and we trekked up the stone filled path to the rustic, red building with the number 11 on the outside. It was small and just as you would imagine a campers cabin to look like. As you open the wooden screened door, the sticky, stale air inside smells of summer camp. Several wobbly, metal bunks with stripped down mattresses were located inside, ready and waiting for the new campers this week. 


We were greeted by the young, eager counselor that would become the role model for these four younger bunk mates that were bound to make lasting memories through their week together. She told us of the daily schedules...horseback riding, time at the stables, swimming, crafts, campfires, singing, the "polar bear swim" at dawn. It certainly sounded as if a fun filled week was just beginning. I can't wait to hear all about it!


And on another note: last week Wyatt began complaining of pain in his back. After surveying the area and not noticing anything on the surface, I didn't think too much about it, hoping it would go away. Though, as evening came he was complaining more and it was clearly very bothersome to him. After exchanging several emails with Dr. R and Wyatt waking the next morning to the consistent pain, we decided to go in for an ultrasound. Following the scan and some miscommunication with the incredibly unhelpful ultrasound tech, we left the hospital and exchanged emails with Dr. R once again. We were unsure what was causing the pain...yes, his organs are enlarged and not as they're supposed to be, but they've been this way for quite a bit longer than this pain has been around. And it wouldn't explain the sudden onset. We continued on with the weekend preparing Maggie for camp, not knowing what to think or do about this new indistinguishable problem. His pain meds offered little relief and he was an irritable, emotional mess of a kid. He experiences pain daily to start with and adding additional uncontrollable pain on top of his typical was too much to handle, for any of us. Come Sunday touching his back caused him to pull away and grimace. And by the evening his back was significantly swollen, particularly the entire length of his spine and creating a large swollen "dimple" at the base. The swelling and pain fanning outward from the spine to both sides. He was in tears to stand so that I could take pictures to email to the doctor. We sent several pics and a description of what we were seeing and hearing complaints of. Dr. R emailed back early the following morning and we were in his office come afternoon. Wyatt's paraspinal muscles are inflamed and spasmed the length of his spine, the thought being that it's due to the increased muscle weakness since his recent infection. We're needing to think more about, and work on, correct positioning for his body with his current needs. We left Dr. R's office with scripts for more medications, one in particular to relax his muscles that are raging at the moment.
Print Friendly and PDF

Thursday, June 23, 2011

Amazing.

I can't describe the feelings that my heart has been feeling recently. I really can't even begin to try. I've found myself thinking, remembering each detail and taking time to be completely in awe of the last 10 years. The sequence of events, the way and time in which things happened. It's so clear to me that it was all orchestrated by someone other than ourselves. I've felt His presence, truly feel Him working in our lives. I don't always understand and ask "why?" a lot at times, but I trust that eventually I'll see and appreciate it. I hope. I can tell you one feeling that I keep coming back to is the desire to share our boy's story. I wish that through this minute spot in the vast Internet world that I'm able to convey to the whole world just how amazing this child is. He's my son...he's my hero.

Print Friendly and PDF

Sunday, June 19, 2011

It's a Dad's Life.

Happy Father's Day to all the Dad's I love!

Print Friendly and PDF

Saturday, June 18, 2011

Learning, Changing and Some Fun.

It's Saturday, another week has passed. There's a lot to say and I've sat down to construct this post several times now. I just can't seem to find the adequate words. 

School has ended for Maggie and she'll be moving onward to 4th grade come August. Wyatt will continue to see his teachers (at home) through some of the summer. Jilly will be counting down the summer days until her first day of Kindergarten, which just happens to also be her birthday. A doubly special day!


I think the boy is doing "ok"...we wait and hope his body starts to mend itself a bit. He did start walking again since coming home from the hospital, which was great! His energy levels are greatly decreased and he sleeps a lot right now. And when he doesn't get to sleep and/or rest it throws his body systems into a downward spiral, which we saw clear evidence of this week. We visited Dr. R in his office on Thursday and walked away from the appointment with several new medications ordered and a hope that it will all help in one way or another...we'll see. Wyatt initially tried sleeping through the appointment and then finished it out by anxiously picking at his sweatshirt. His weight was down a few pounds which means the need for an increase in the calories of his TPN (IV nutrition). And while we were in the office Dr. R read through the results of the video EEG that he had done while inpatient. At that time they didn't see any active seizure activity (we didn't note any seen by us that evening, either) and things were once again under control, but it did show an encephalopathy. This term isn't new, it's what we expected would be seen in the study. It's been noted in most of the studies and/or procedures that have been carried out to view this body system. And as Dr. R explained to Wyatt, the little mitochondria in his brain are not working like they're supposed to, which causes the encephalopathy. The various types of seizures being only one result of this. His body is fighting to keep up with itself.

Right now he's laying curled on the couch, IV pole by his side with meds infusing into one lumen of his central line and TPN continuously infusing through the other, two long tubes extending from his belly...one draining thick, very dark brown/black bile from his intestines and the other draining green bile from his stomach. He's nearly asleep after waking up just a few hours ago. This morning he's cried and yelled, complained and melted down because he just doesn't feel good. He hurts a lot today and the narcotic pain reliever can only do so much.

When I look at my boy I can visually see the change in him....I do believe that's where the lack of words (and subsequently the lack of posts) are coming from right now. At the moment, it's difficult for me to really think about where he is and try to explain. I've found through doing this blog that it's hard for me to really "lay it all out there," not in a truthful sense, but telling all sides of how Mitochondrial disease affects Wyatt's body. There's a lot I don't talk about...partly being that it creates very lengthy posts, but it's also overwhelming to look at the "whole picture" much of the time. I've become quite accomplished at looking at the body systems that need the most attention in the moment, a triage of sorts. The systems in the focus change often as new needs arise, so eventually you may get the full glance. Or maybe I should just work on my "coping" skills and lay it all out there sometimes. I'll think about...


But in amongst the rough times and during the good, we've been having a memorable time. The Philadelphia Phillies played a double header on Wednesday, a game in the middle of the day and another in the evening. We were fortunate enough to be able to attend the game starting at 7:05pm. It was a special night (and Wyatt was feeling pretty good!). We not only attended the game but were escorted onto the field prior to the start, where we greeted and received autographs from Michael Stutes, a quiet young man who went on to pitch the final innings of the game. After our time spent on the field, looking around, snapping pictures and taking in the sites, we were escorted to "Doc's Box." Pitcher Roy Halladay's private suite where we spent the rest of the evening watching the Phillies overtake the Marlins (eventually) with several other families who we've come to befriend through a small support group at the hospital. This group, befittingly called "The Chronically Cool Families," was created by a family navigating the medical world with an idea and an inspired social worker who was part of their journey. It's a small group of families that gathers once a month to talk. At the meetings the parents casually chat as the children gather in an adjoined, but separate room with Miss L, the very favorite child life specialist, doing crafts and talking. It was really nice to spend the evening at the game together with these special families, each with their own story and individual journey. This was the first Major League Baseball game that our three attended...and a memory it did make! 



Print Friendly and PDF

Monday, June 13, 2011

Praying Prayers of Peace and Love.

The Mito community is small. It's not a widely known disease and/or disorder. In fact, outside of the hospital setting, all the times that I've mentioned Wyatt's diagnosis I've then had to follow up with an explanation. It's not an easy thing to explain or understand. I've only personally met a handful of families whose stories directly involve Mitochondrial Disease in one way or another.

Like many other parents, in an effort to learn all that I could about the disease that began to invade our lives I sat down at my computer and started searching for information that would tell me more. Through my hours of research I came upon a website that's run by parents to support other parents that have children with various special needs, some minor and others complex and more severe, a very diverse group. Within the website there was a section specifically dedicated to those families effected by Metabolic and Mitochondrial diseases. I read for months before constructing my first post and briefly introducing myself and my son...5 years ago. I still connect with many of the parents that I've met through the years. It's a community made up of mostly Mothers who have been brought together looking for others who know and have been or are currently travelling a similar journey with their child/ren. It's a very special group of parents and children. These Internet "friends" understand what most others do not...we can relate to one another. I've come to care for many of the families and their children. So, when another family is struggling and in a position that they must make unfathomably hard decisions relating to their child's care it really hits home.

This week two children, who also have Mitochondrial disease, are growing weary in their fight. Zach Moody and Eithene Hilliard have both been placed in hospice care and are making cherished memories with their families. I've found myself thinking of these children and their families a lot, praying that they feel the love that surrounds them and a peace that surpasses all understanding. My heart hurts for these parents that will watch their child's earthly body take it's last breath. These young children will soon be free of their broken bodies and healed at last. I'm asking you to keep these families in your prayers as they begin travelling a new, very different journey with their children.
Print Friendly and PDF

Wednesday, June 8, 2011

Home.

He's home! The boy is recovering and we're equipped to continue the IV meds and such here at home. He's weak and very tired, but we hope we can work our way back to his "baseline" status in the coming weeks.

Not doing well:



Starting to feel better:


 (Big bear got his double lumen broviac too.)
 

Print Friendly and PDF

Monday, June 6, 2011

Turning it around.

This boy of mine is awesome! He had a fabulous day today, ending with a visit from his friend Miss L (child life specialist)...smiling and laughing together. It was just what he needed. At one point he was laughing so hard that he began snorting! It was amazing for this Mommy's heart to hear the sound of this child laughing. Such a special fella. Bravery that goes for miles, strength that exceeds all understanding, a power from above that keeps him smiling.

This last week was a bit stressful. At times scary, worrisome and chaotic. Seeing the thermometer read 107.4 degrees was certainly concerning, but watching my child continuously bleed in excessive amounts from various areas of his small body and hearing his pain filled cries were bone chillingly frightening.

But today he has been fever free. Yesterday's culture is still negative, so it appears we may have a handle on the bug that wreaked havoc on his system. He does have some residual issues that now need addressed as a result of the stress that the infection imposed on his body. But I'm focusing on the "doing better" part in this post. He turned it around and is moving in the right direction. And for that we are so, so very thankful!
Print Friendly and PDF

Sunday, June 5, 2011

Thanks.

Bryan and I wanted to take time to say thank you to those of you thinking and praying for Wyatt and our family. We really appreciate it. It means a lot to us to know that others are taking the time to say a prayer and think of our sweet boy.

He's currently sleeping comfortably after a day filled with visitors. :-)
Print Friendly and PDF

Saturday (and Sunday).

If you're on facebook with me then you may have noticed that yesterday was a bit stressful in our room of the hospital. It started with a minor little bleeding nose and turned into a scary day. Wyatt's blood counts have been lower than low. Typically all of his blood counts trend low (white count, plateletts, hemoglobin, red blood cells, etc.) but his body is now working overtime while fighting the infection, his organs aren't functioning properly and need a little help.

Yesterday we woke up to Wyatt's g-tube drainage (stomach) draining brown...old blood. We were unsure where it was coming from and suspected his clotting factors were off, as we've seen this in the past. Though, this was a lot more blood than we're used to seeing. He then asked to be carried to the potty (he can sit on it, but not able to walk just yet.) As he was in the bathroom his nose began flowing freely of blood. I truly have not seen anything like it. It was soaking numerous wash cloths, we were pinching his nose with a cloth and blood kept flowing around our attempt of blocking it. He then began vomitting large amounts of thick, red blood. Screaming in between the retching that his belly hurt so bad. And this nose bleed turned into an event unlike anything we've ever witnessed before...his heart rate soared sky high, his blood pressure low, his eyes rolling upward. Doctors and nurses surrounding him trying to figure out what to do. A lot of the emergency supplies that they needed were not carried on the floor that we are on, they aren't equipped for such a situation, but they had running nurses...to the ER and PICU. To add to the pressure of the situation the resident doctors that were in our room trying to help our son and working for the weekend shift have never met Wyatt and didn't know his history at all. They were talking over ideas and trying to make plans and I would interject and tell them the answer before they could look it up on their computerized charts (what meds they were not to use due to adverse reactions, what antibiotics he was on, history, etc). At one point in time one of the residents asked if he had an IV. I quickly butted in again because I could see the unknowing look on the other residents face who she was asking the question to, "He has a central line. He's here for a line infection." Her response "Oh."

Bryan and I were ushered out of the way (but I was certainly not leaving the room) as the doctors and nurses gowned each other up, our son covered and a nurse holding a large basin under his chin nearly completely full of the blood from his GI tract, his nose being pinched with a blood soaked rag, he was screaming in pain and fear. They began ordering more Morphine and Versed. In his drug induced state they wrapped him in a blanket tightly and began pushing 'packing' supplies up his nose in an attempt to control the bleeding in that area. A nurse straddling our boys body on top of the bed, two doctors on one side of the bed, a nurse paging doctors for assistance, another administering meds and the two most experienced nurses on the floor on the other side of the bed assisting the doctors. He continued to cough and vomit mouth fulls of blood. As the bleeding began to slow from his nose, blood continued to flow quickly from both his G and J tubes, filling the 500ml bags collecting the fluids. As the doctors left the room to check his labs that were drawn just before the chaos began (and I imagine take a deep breath), the nurse helped me to clean up our floppy, druggy boy. Before the doctors left the room they instructed that he try to stay in a sitting position to avoid the blood going the wrong way and ending up in his lungs. Trying to keep a floppy, half sedated child upright is a bit tricky. He had pillows stuffed all around him and a neck pillow holding his head up off his chest. He then muttered in his groggy state "this is the worst day ever." Indeed, it was a pretty bad start to our day.

They ordered platelets and red blood cells to be infused as soon as possible and we were then to watch the blood continue to drain out of his body via his GI tract. Hoping that what we were seeing was just a result from the intense nose bleed that caused our boy such a critical state, but not confident. The blood drained out consistently through the day and come evening he once again vomited another very large volume of blood. Though this time it was also containing large clots, signaling that his body was kicking into gear a bit and we were hopefully nearing an end to the bleeding. Throughout the evening we began seeing less blood coming from the J-tube and by this morning brown old blood flowing through the G-tube once again. We came full circle. The bleeding has seemed to stop in the nose (they just removed the packing) and if there was a GI bleed (a good possibility) it has also ceased. His blood counts are "ok", not too great but better than yesterday.

There was talk of portal hypertension (spleen is enlarged, along with everything else in his abdomen), bone marrow problems and more talk about trying to get the approval to start Omegaven. I'm still trying to process all that has happened and has been said. Today he will be getting the video EEG that was talked of (and postponed yesterday due to his more critical matters that took priority) and if he begins to bleed he will head to the OR to find and "fix it", as the doctor said. He continues to require morphine for pain and his cultures are still positive for infection. His temperature has been up and down, responding to medication to lower it. TPN has been re-configured and tweaked. J-tube meds have been decreased to avoid vomiting for the time being. His heart rate has come lower since receiving the blood and plateletts (which is good), it's not his normal but it's a step closer.

Today he's looking a bit better, interacting and even giggling at the TV shows that he's watching (when the morphine is in his system). We're viewing that as a step in the right direction. He promised the doctor that there would be no funny business today...time will tell.
Print Friendly and PDF

Friday, June 3, 2011

Friday.

Last night didn't quite go as well as we would have hoped, but I suppose it could have gone worse. We did get some rest initially, though come the middle of the night Wyatt's temperature had reached 107 degrees. And you can just imagine how he was looking. His vitals all over the map and his skin greatly discolored. He was quietly grunting with each breath that he took. After a few medicines were administered and interventions carried out in an effort to cool his body, with time the temperature did begin slowly dropping. Which was good in and of itself, but he then began to seize (again). A continous on and off pattern for awhile. We were able to talk with Dr. R this morning and go over all that has been happening. He contacted the neurologist and they'll be hooking him up to an extended video EEG to look at what those brain waves are actually doing in that perfectly packaged little head of his. Though, at this point in time I would be just fine if he decided not to 'perform' for the EEG....I've had my fill of seizure witnessing. I don't need to see anymore, thankyouverymuch. Out of all the diagnoses and issues that Wyatt deals with, which is certainly plentiful, the seizures are the one issue that I dislike the most. They can be so unpredictable and now we know just how unrelenting they can be. There is a drug of choice that could be used to stop a seizure, however Wyatt's had an adverse reaction to it once before, which throws that medication off the list of possibilities for him. Other than fever and seizures his labs have been also showing signs that his body is struggling to keep up...causing changes to be made to his TPN and daily regimen of interventions. His pain is great, but (thankfully) morphine does take the edge off enough that he'll interact a bit and stare blankly at the TV (instead of laying with his eyes closed and moaning, which he had been doing.) He's currently unable to move from his bed due to weakness and pain. And he has lost the ability to control bodily functions, which bothers him a lot. But he did flash me a 'Wyatt smirk' so I know my boy is still in there.
Print Friendly and PDF

Thursday, June 2, 2011

Line Infection.

It's official, Wyatt has a line infection. We're still waiting for specifics, but do know that he's growing something. Our day was filled...seeing doctors and visits with those that saw our name on the door and came to say hello. We've been tucked in to our home away from home in the wing of the hospital that we're quite familiar with. Today consisted of a roller coaster of pain, fever and seizures. A lot of seizures came late this afternoon. One after another with little to no time between. Nerve wracking doesn't begin to explain the tense emotions hanging in the air. The doctors discussed several plans and after going over each of the options we decided to increase the IV seizure med early (remember we're weaning on to the full dose) in hopes it may help. And in the meantime ride out the seizures until we can no longer. It's scary and worrisome, to say the least. Our boy is sick.

I now plan to lay myself down on the makeshift parent bed and try to sleep. We were able to squeeze in a total of 2 hours of  "rest" (I use that term loosely) last night and I suppose I should take the clue from my heavy eyelids that this body of mine would like at least that amount this night too.
Print Friendly and PDF

The Hospital.

We came in last evening with a boy burning up with a rapidly rising temperature. Blood cultures were drawn and several antibiotics started, along with adittional fluids and medicine for pain. The labs they drew were a mess, as we expected with his body so stressed. We're hanging tight and trying our best to treat the small "fires" while waiting. Our boy is hanging in there as best as can be with the circumstances.




Print Friendly and PDF