Friday, September 30, 2011

One day at a time.

I can't seem to find the patience or words to sit down and type, but I'm trying because I know there are more than a few people that are waiting for an update on how our boy is doing.

The good news: we're seeing small steps in the right direction. They switched his PCA pump from Morphine to Dilaudid a couple days ago. At first we didn't see any difference at all and were feeling a little discouraged. They then began to start the process of switching to a new pain med, Methadone. It's not used in our hospital often and many are not comfortable with it, so it was causing a bit of an issue among the nursing staff. It all came down to not being sure how to use it. The palliative care doctor that's overseeing Wyatt's pain management was off for the day and there was a lot of confusion swirling. They eventually came up with a plan, but as they were finalizing said plan Wyatt began to perk up a little. So much so, with the physical therapists help we were able to transfer him and all his lines/attachments into a reclined tumble form chair sitting in his bed. It wasn't easy and at first caused him to forcefully retch, but his shaky muscles relaxed after some time and he settled back into the soft seat. He looked so different than just a few days prior...a good different! He was sweating as his muscles were working so hard. A neck pillow holding his head upright and a new comfy blanket laying over him.

His pain is slightly decreased. We decided to not go with the methadone last night for several reasons. One being they couldn't seem to coordinate it all and it would have left him approximately 18hrs without pain medications. 18 hours is a very long time to a 9 year old, let alone a child that is in so much pain! We weren't sure the dilaudid was doing anything, but I wasn't quite comfortable with taking the chance of stopping it, just in case. So, with this small improvement of pain we decided to keep going with the dilaudid for the time being. I talked with the palliative care doctor this morning who said she would be meeting with the nursing staff to go over how the Methadone should/could be handled on the floor. We know this will be in his future and it's clear that his entire "team" needs to be aware of how it'll be delivered and handled, so that we're all more comfortable with the situation.

This morning he has been (again) forcefully retching and vomiting several times. The last time being when the doctor walked in to say hello for the day. After talking and witnessing the force that's associated with these "events" she decided to stop everything that's going through his GI system....his system isn't moving, absorbing or tolerating any amount of anything at this point. He's not tolerated anything for awhile now, but his body's reaction to even the most minute change is now extreme. The medications that were able to be moved to an IV form were long ago, but we were stuck with a few enteral meds that had no alternative route to be given. We stopped giving the majority of the enteral meds already earlier in the week, but were left with two. But even those two small amounts are so hard on his body, it's just not worth it.

He's puffy and retaining fluids. His heart rates are a bit lower, though his respiratory rates are even more increased than yesterday. His breathing is labored, shallow and fast. This is his body's way of compensating for the greatly enlarged organs pressing on his diaphragm and down through his pelvis. We've been using the bi-pap machine to our advantage and having him put it on for several hours during the day, as well as when sleeping. Giving his body time to rest and fill his lungs more than what he's able to do on his own. His blood pressures are greatly increased today, which they're keeping an eye on. It's a delicate balance keeping this boy in check. Each day there are new infusions being added and things that need tweaked, looked at and/or changed completely.

But he's hanging in there. One day at a time.

We have a couple of exciting things popping up here in the hospital in the next day or two. I promise to share and hope to have pictures to include! Stay tuned...
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Wednesday, September 28, 2011

Staying the course.

We've had a few very serious talks with Wyatt's doctors these past couple days and between Bryan and I about the future and our wishes for our son at this point in time. They're the conversations that no person ever wants to have, but are needed at times. It was so very hard to think of the options and consequences that each would or could hold. So very hard! But we made it through, slept on it a bit and woke yesterday morning ready to take on the day. Emotions have leveled out and processed a bit more, the initial shock wearing off. We now have a goal.

Yesterday it was decided that the central line needed to come out. He was getting sicker and not improving, even after giving the amphotericin time to work. The OR schedule was booked, so instead they began planning to take him to the PICU, setting up a makeshift mini OR and would remove the line as soon as they could. But it also came time to decide what kind of line to put in after his central location was removed..several peripherals or a femoral. The safest options, in regards to infection risk, would be placing peripheral IV's. There is a big risk of the fungal infection spreading with the femoral lines. So, it was decided we would try peripheral lines and move to a femoral if we need to. He now has peripheral IV's infusing very harsh medications and fluids through them continously. He already blew one vein last night and needed the IV team to place another....so, we'll see how this goes.

He recovered in the ICU while receiving more blood and a 2nd potassium infusion for the day. After the procedure the ICU doctor told us of her plan to check in with Dr. R to talk about what to do with Wyatt, she didn't feel entirely comfortable sending him back to our usual spot on the floor because, as she said, "he is sicker than a lot of the patients that are in the ICU already." She was wanting to keep him in the ICU, but after some discussion, following his blood and potassium transfusion/infusion, his bed and attachments were rolled back to his room. Wyatt was much more comfortable in his "own" space. We arrived back to the room just in time for a few visitors to show up. He tried his hardest to stay awake for most of their visit and even talked with them a little bit.

His organs within his belly enlarged and crammed together, still squishing all that resides in the space. Making his belly hurt so badly. They increased his morphine through the PCA pump two times yesterday. And there has been talk of trying a different drug today. His heart rate has been staying very elevated (for him), possibly due to the amount of pain that he's having. And last night his body was having a tough time regulating its temperature. He continues to have periods of forceful retching, also.

But, we're "staying the course" and trudging on fighting this nasty infection. He can do this.

As always, thank you all for the thoughts, prayers, love and support. We appreciate each and every one. It means so much to us. Thank you!
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Tuesday, September 27, 2011

Missing my boy.

I miss my boy. Currently, he's been laying nearly motionless, mostly grunting and groaning responses. His skin discolored and his body looking frail. Every so often he may shake his head yes and/or no when asked a question. Or he'll motion to the area that it hurts the most for the doctors and nurses. We've gotten about 30-60 minutes total of interaction out of him each day the past several days. But he's usually sleeping or going in and out of sleep while staring blankly at the TV. When he is awake he hurts a lot.

He's very sick and he looks very sick. It's scary. His body isn't tolerating the treatment well. He hurts a lot and seems to be still running temperatures. Though, it appears last night that always reliable autonomic dysfunction kicked in and his temps are now also swinging low.

I wish I could take it all away. I really, really do. He's not going the direction that we were expecting.
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Sunday, September 25, 2011

It's Sunday.

The day was as we expected yesterday, he slept the majority of the hours. He did wake to visit with a loved one, sat propped up for a short while interacting, before he slumped down into his bed complaining of increased pain. A quick swipe with the thermometer showed that his temperature was up again. Just a little while later he started shaking and the temp climbed a bit higher to 103. As he was shaking, his hands began stiffening/twitching and he started repeating words. He was "with it", yet not really. And the night before as he was spiking his big temperature we saw very similar (if not the same) things and heard the same words repeated...he has no recollection of either of those events. Which makes us think he very possibly could be seizing as he's spiking the temperatures.

His belly has been swollen, hurting him a great deal and more firm than usual. The output from his G and J tubes has greatly decreased the past 3-4 days, which is unusual for him. Usually, he puts out a lot of interesting colored fluids from both the tubes (between 500-1000ml's/day is typical for him anymore). Last night it was decided to do a few xrays looking for clues. And we were told this morning that his liver and spleen are very enlarged and squishing all his intestines, which is probably why we have such a huge decrease in output and explains the swollen, firm belly. The fluids are essentially "stuck" inside him because the area is so squished. That would explain the great deal of pain coming from his belly...between the enlarged organs and the amounts that he typically drains that are not able to flow out.

He's been liking the PCA button and we've seen minor decreases in pain. Not as much as we'd like, but it does seem to be doing something to take the edge off. (We've occassionally gotten a few 8 out of 10's on the pain scale for specific areas of the body, instead of always 10 out of 10. One time there was even a 6 thrown in there for an area.) Though, at times when the pain is really bad he doesn't appear to feel any relief.

Yesterday, before we even started the round of ampho-terrible, he was running a significant temperature. We gave him the toradol and not long after started the pre-medicating process (for the amphotericin) with doses of IV benadryl and Tylenol. The combination of the toradol and tylenol seemed to kick his body into breaking the fever and he began to sweat it out again. Just in time to start the nasty med. He did spike another temp through the night, but this time an hour after the ampho dose was complete. Which could have been what his body was going to do anyway and not related to the ampho, but could also be directly related...there's no way to tell. But overall it was a quieter night than the previous, which I am very thankful for!

This morning he did wake up  He's currently flopped out in bed, staring blankly at the TV and occasionally "resting his eyes" with sleep. He's a ripe shade of yellow/green/orange.

The weekends are pretty quiet in the hospital. We saw Dr. R this morning and will probably see the infectious disease doctor at some point. Right now, Bryan is home picking up a few things and running a couple errands before coming back. This afternoon we're expecting a few visitors, which will be nice. We miss the girls terribly! We've been able to skype with them in the evenings, but we're looking forward to hugging them this afternoon.
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Saturday, September 24, 2011

Bad day. Really bad night.

Yesterday was rough for Wyatt. His pain was increased, his temperature elevated and he was "withdrawn" for a good portion of the day. Just staring, eyes closing to a sleep periodically, growling at us with his moans in response to questions and just feeling lousy. Several brief times watching TV and "resting his eyes," as he likes to tell me as he's falling asleep. It got a bit worse when the urology resident walked in to the room prepared to change his foley catheter. It's important to clear the infection residing in his bladder, I get it, but I felt for my boy. With a nearly 103 temperature and just getting by with enough energy to simply lay in the bed and his body hypersensitive as it was. He worked himself into a frenzy about the catheter change, to say the least. I was at a point that I was able to talk and try to convince him, but I couldn't bear to help hold him down to do this. I know I wasn't the only one in the room hesitant to get it done with how he was feeling. But they did. After that point he laid completely still, staring, unresponsive to most and only slight groans to my questions. Though, I did get a quiet groany "I love you too." He was exhausted, physically and emotionally done for the day.

However, it didn't get easier as the night wore on. He was started on a new drug, amphotericin. I was warned by several before starting the first round that it has the nickname, "ampho-terrible", because of its nasty side effects. That was no joke! As he received the first dose of amphotericin he began to shake all over, painful rigors. His yellowed/green tinted skin turned a shade of grey that I don't believe I've seen him as before. They upped his oxygen by several liters to help. His temperature spiked incredibly fast and the thermometers only read "HI", as in his temperature was too high for the thermometer to read. We (the night nurses, Bryan, and I) think the temporal thermometers stop reading at 107.9, so apparently his body was above that (according to two different temporal thermometers that we were using to make sure of the reading). His axillary temp was a bit lower (but typically not as accurate for him) and they decided to record that in his chart as it was at least a number and not only "HI." He was quietly saying, "I'm so scared" over and over. And was hitting his pain button repeatedly, with very little relief. It was a bad night. His temperature would drop for a short while and then spike and drop again. I anticipate him sleeping much of the day today, while his body tries to recover. And just in time for another dose of  "ampho-terrible" this evening. Please pray that he'll get through it a little easier this time.

He just woke for the first time this morning. Looking rough, as we expected. His coloring now a more prominent shade of yellow/green and laying motionless nearly falling back to sleep. His body needing the rest.
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Friday, September 23, 2011

Fungus.

Not long after I posted my update yesterday morning the doctor came to check in. With him came new news, Wyatt's growing a type of fungus in his central line. This is not good news, by any means. But I had a feeling there was more to it than just a bladder infection with the fight that's going on in his body right now. They called in the infectious disease doctors and changed the anti-fungal that he was on. We don't know the actual type of fungus yet, they hope to find that out today.

Despite what the cultures revealed our boy seemed to have an "ok" day, relatively speaking. He's had worse! He was tired and hurting until the later afternoon when he began to perk up a bit, moving his body more and less withdrawn. Come early evening he was hooked up to a PCA pump with morphine. A PCA pump is a little machine that gives Wyatt the ability to control the frequency of his pain medication with the push of a small hand held button, whenever he feels the need. Ah, control. This is something that Wyatt doesn't have much of these days. He has no control over his body, the tubes and machines that he requires to function on a daily basis, hospital visits and doctors...giving him the ability to control his pain on his own terms, when he wants and feels the need, is such a good thing for him. At first he was a little hesitant and seemed almost scared of pushing the button. We explained it thoroughly and reassured him that nothing "bad" was going to happen. There have been times that he forgets that he has this new ability and complains of pain, which we then remind him of his button and reassure him that if he feels he needs to push it he can.

After being hooked up to his PCA we took a little field trip downstairs to attend our monthly Chronically Cool Families group. Wyatt was looking forward to seeing his friends and did very well interacting. Mommy and Daddy enjoyed the adult group, as well! By the time we made it back upstairs and got Wy situated in his bed he began to complain of pain and "being cold." Sure enough, his temperature was once again high. Since starting this round of infections nearly two weeks ago we've seen this, when he sits upright in his wheelchair for an hour or so his temperature will rise and "spike." The doctors haven't been able to give us an explanation for this yet. Currently, he's running a low grade temp, though he's not been sitting up this morning.

So, we will see what today brings. So far we've already talked with Susan, the nurse practitioner in Urology and we'll see the rest of the docs pretty soon.
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Thursday, September 22, 2011

An update on the hospital happenings.

I know I owe the good ol' blog a more thorough update on what's been going on here in the hospital. It's been tough to sit down and organize my own thoughts enough to compose a whole post that would make sense to someone other than myself..

Wy is still sleeping this morning and we're sitting in a darkened room lit by the laptop and hallway lights, as the nurses try to navigate around the various machines and lines running from his body.

He's on the right track, I do believe. He slept the majority of the day Tuesday, showing seizure activity all throughout the morning. He then awoke around 1pm for a brief time before spiking another temperature which left him miserably hurting and falling back to sleep. His billirubin levels have continued to rise. We did locate one "bug" that set up camp in his bladder and we're now waiting for specifics of what drug will get rid of it best. Though the antibiotics that he's been on should do the job. Is that all that's going on in his body? We don't know. But it is all that was found, so far. So, the plan up to this point (I haven't heard if today's plan is any different) was to continue on the full round of what was started, antibiotics/antifungals, when we arrived...to try to get rid of anything else that may be hiding out in there.

We must now also tackle the issue of catheterization and how to move forward. He currently has a foley catheter placed. Though, it sounds like we need to remove it so that we can clear the infection. We're hesitant of going back to intermitently cathing only because it's started the bleeding every time the past few months. And I really don't want to go there agian! The last I heard the docs (urology and Dr. R) were going to hash it out and form a plan. We haven't heard that plan yet...

Yesterday we met with the new palliative care doctor in the hospital and had the opportunity to talk for quite some time about our boy, his history and quality of life. It was a good meeting, tough to get through, but left us with hope that we'll be able to get a better handle on controlling his ongoing pain. She talked about all the options that we're looking at and ways to move forward. We were being completely open and I believe she was, as well, which I whole heartedly appreciated. Our boy's health is not good. And right now we all need him to feel comfortable and have days that he can enjoy. The palliative care doctor asked Wyatt if there was one thing she could do for him, he responded with "go home." The doctor will be looking into a few additional options and we did already start him on one new med last night. I think we'll be seeing her again today to talk a little more.

So, this morning we wait to hear the plans for the day and see what today may bring. Fevers have lowered and are currently gone, which is a good sign.

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Tuesday, September 20, 2011

I'll give you three guesses.

I'll give you three guesses where we're sitting right now.

What's that?

Oh. You only need one? I guess we really are that predictable of late.

We came back to the hospital yesterday afternoon. Our boy is jaundiced and spiked another temp. Pain control continues to be an issue. They have cultured everything that can possibly be cultured in every possible way. Blood work is showing what we would expect at this point...not a lot of "good." They started new rounds of anti-fungals and antibiotics. It seems this is an infection thats good at hiding.
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Sunday, September 18, 2011

Mitochondrial Disease.



What is Mitochondrial Disease?
Mitochondria exist in nearly every cell of the human body, producing 90 percent of the energy the body needs to function.  In a person with mitochondrial disease, the mitochondria are failing and cannot convert food and oxygen into life-sustaining energy.  For some, mitochondrial disease is an inherited genetic condition, while for others the body's mitochondria can be affected by other environmental factors. 

How does Mitochondrial Disease affect the body?
The parts of the body that need the most energy, such as the heart, brain, muscles and lungs are the most affected by mitochondrial disease.  The affected individual may have strokes, seizures, gastro-intestinal problems (reflux, severe vomiting, constipation, diarrhea), swallowing difficulties, failure to thrive, blindness, deafness, heart and kidney problems, muscle failure, heat/cold intolerance, diabetes, lactic acidosis, immune system problems and/or liver disease. 

What is the prognosis for these individuals?
As more research dollars are raised to find more effective treatments and ultimately a cure, some of the affected children and adults are living fairly normal lives with mitochondrial disease.  At the opposite end of the spectrum, many are severely affected and some children do not survive their teenage years. 

When is someone with Mitochondrial Disease at the highest risk?
The child or adult is at highest risk for neurological and organ damage during and for the two weeks following an illness. Therefore even a simple flu or cold virus can have devastating effects on the patient, even death.  Any illness must be treated immediately with medical interventions, like IV fluids and IV antibiotics. 

How many individuals are affected?
Every 30 minutes a child is born who will develop a mitochondrial disease by age 10.  Each year, 1000 to 4000 children in the United states are born with a mitochondrial disease. While exact numbers of children and adults suffering from mitochondrial disease are hard to determine because so many people who suffer from mitochondrial disease are frequently misdiagnosed, we now know the disease is approaching the frequency of childhood cancers. Many are misdiagnosed with atypical cerebral palsy, various seizure disorders, childhood diseases and diseases of aging.  Still others aren't diagnosed until after death.

This week is Mitochondrial Disease awareness week. Please visit the UMDF website to learn more about Mitochondrial diseases and the steps that are being taken to educate, research and hopefully one day find a cure.
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Friday, September 16, 2011

Sleep.

He slept. Hooray for sleep! It wasn't without a few 'hiccups' through the night, but he did sleep some, which we're all thankful for.


He woke this morning more relaxed and calm (or as "calm" as Wyatt will ever be.)


His temp is fluctuating still and he's not feeling back to the baseline that we always strive for, but today he's had times like I captured here. When he's not feeling so bad.


His mischievous smirk has returned. When taking these photos I was encouraging him to sit in his activity chair and play with play dough and matchbox cars (rather than laying sprawled out on the couch). He griped about the idea a bit. I put the tray on and even secured it so that he couldn't push it off and "escape", as he told me he was going to do. He was squirming and determined that he was going to slide his body out from under the tray. That floppy, loose muscle tone comes in handy in such a case, apparently.



I love this kid...the ornery, disagreeable side and all!
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Thursday, September 15, 2011

Where to begin.

As I sit here trying to think of the appropriate words to type to update you, our friends and family, all that I can think is "Where do I even begin?"

First and foremost, the blood cultures never grew any bugs and we're left scratching our heads and wondering what exactly is going on with this child of ours. Much of yesterday was spent trying our hardest to find an IV drug that would control Wyatt's pain adequately, meanwhile he received a slow drip of packed red blood cells. A boost his body needed. After finally reaching a more tolerable pain level and seeing smiles appear on the boy's face we were offered a chance to go home. He was still running temperatures, but they were staying consistently around 100-101 with only small spikes from that point. The doc said he wasn't too concerned with them as long as they stayed that way and nothing new appeared. We were all pleased the cultures weren't growing anything. Possibly this is a viral bug. With the pain meds and such that we have available for him we were equipped to handle his care at home.

After setting things up with the infusion company and navigating a few minor hurdles that needed jumped to get the new meds right away, we were on our way home yesterday evening. As we were transferring him to his wheelchair from the hospital bed, he was complaining that he was cold and hurting. I took his temp quickly and wasn't real shocked to see 101.6. The nurse and I looked at each other and I could tell we were both thinking the same thing, wondering if it was a good idea that we were leaving. I remember saying "Well, Dr. R did say he wasn't too concerned about the temps." With that we walked out of the doors and waved goodbye to all our favorite nurses.

We loaded the boy up and we were glad to be on our way home again. Wyatt moaned periodically during our ride, he was uncomfortable and felt that his tube was popping out of his belly. By the time we pulled up to our home he was crying and holding the tube in place with his fingers. I felt his head and he was burning up. I quickly took his temperature right then and there in the van...104.9. Bryan scooped him up to carry him inside as he was crying, shaking and yelling that he "hurts so much!" The girls stood waiting on the porch ready to happily greet him as he came home again, but instead they were quietly watching with a look of concerned fear on their faces. I sat down at the computer and typed emails back and forth with Dr. R asking what he wanted us to do, as the situation just changed greatly. As instructed, we gave him the meds and were able to get him calmed down. I began to look him over and try to figure out all the issues that were going on. Where was all the pain coming from? Was his tube really coming out or was it the pressure from sitting up right in his wheelchair? At the same time, repeatedly taking his temperature which was now 105.5. He began to fall asleep and as his temperature began to rapidly drop his body began to seize. Not what we needed at that point! Hours later, as the situation calmed down I sat on the couch across from my boy just staring, watching his sleeping body and the fluctuating numbers on the monitor, listening to his bi-pap machine as he inhaled and exhaled with each breath, thinking to myself, "What in the world just happened?!" We didn't dare move him and I wasn't about to leave him sleeping in his bedroom by himself after all that, so I laid myself on the couch and tried to sleep for a few hours. He woke several times through the night complaining of one thing or another. His body struggling to regulate itself. He was sleeping when I saw the thermometer read 106.8 degrees. We watched as his body was eventually able to break the fever again and the seizures started. A cycle that we're certainly not fond of! We watched as the seizure ended, he retched and vomited until he had broken blood vessels scattered on his face. I expected him to fall into the last phase of the cycle...the phase where he sleeps for hours on end, oblivious to the world around him. The one that has happened with him every time. But instead, we had the very opposite of what we were expecting. In the very early hours of the morning he was manic, emotions ranging from one extreme to the other, wired and not able to sleep no matter how badly he wanted. His muscles twitching and shaking all day long. Oh, my word...there was not enough caffeine in our house to prepare me for this behavior today. Saying I'm tired would be an understatement. Saying he's tired would be an understatement! I KNOW he's tired, he just can't 'organize' himself or his body to get to the point of relaxing. Around 3pm this afternoon he rolled over and closed his eyes, I thought for sure he'd be out for an extended period of time. I took a deep breath, "Finally!"

Wrong!

He slept a short time before crying out and wimpering in his sleep, his body twitching. His temperature rising slightly again. His sleep unsettled and restless, before he woke again. He's at least a little less crazy, though still seemingly "high" on something or other.

His urine has cleared of blood with the foley catheter in place, but we now have an "amber" shade of pee collecting in the foley bag. I couldn't figure out why the switch in colors until I went to help him change his clothes this morning. He doesn't only have the "sick look" that he often gets and that we just talked about with the doctor this week, but he's now also sporting the "my liver is not happy" look. With that comes the thick, frothy, brown urine. If it's not one thing, it's another!

Right now, at this very moment his temperature is lowered, sitting around 99-100 degrees, but not above 101. I'm a little concerned with his color and this newer behavior. We did have the opportunity to talk through this type of behavior with the doc recently as we've seen it before, just not to this degree. I'm praying he'll sleep tonight, like really sleep a good deep sleep. I'm also hoping the twitching muscles and short periods of seizure like activity that he's had throughout the day will disappear with a more rested body.

*And by the time I actually got around to posting this, his temp is now above 102 degrees again.
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Tuesday, September 13, 2011

Again.

Friday he started complaining of an increase of pain and shortly thereafter the bleeding within his bladder started again. We had a 4 day break from the bleeding once we removed the foley cath the previous Monday, after being in place for a full 7 days. We carried out the now usual routine with these circumstances and went on with our weekend, noting color changes and amounts that were draining. Sunday, while shopping at Ikea (love that place!), he began to complain more and his urine was now a darker shade of red. As he began to shake and tell us how cold it was I pulled out the thermometer that I had stashed in my purse. His temp was on the rise and we exited the store as quickly as possible (which is not easy to do in Ikea!) We put our boy to bed, emailed the doc an update and hoped that the temperature would settle as his body rested through the evening. Monday morning was upon us and an email to and quickly from the doc had us awaiting the "ok" to arrive in day med for labs and cultures. It was lunch time and as we were sitting in the waiting area waiting patiently for our name to be called, Wyatt, again, began shaking and complaining of how cold it was. I took his temp just as the nurse called his name and quickly reported to her that his temp was now over 102 degrees. After a few phone calls and the paperwork signed he once again had himself a bed up on our cozy wing of the children's hospital.

His bloodwork is signaling that he's battling another line infection, though we're still waiting on the cultures to come back confirming or disproving the thought. The fever is holding on and he has his "sick look". Another foley catheter is in place and the bleeding has nearly stopped. A plan is in the works for a cathing solution as we just can't keep going back and forth with this situation. Two options are being thrown about, one doc preferring to leave a foley cath in place all the time and the other preferring to try the surgical route, more specifically the mitrofanoff procedure. But at this moment, now that the bleeding is under control with the foley cath in place, the focus is placed on the "sick" portion of this hospitalization. We need to identify and tackle that part before moving forward with any other plan.
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Friday, September 2, 2011

This week.

Another week has come and nearly gone. We made it through the first week of school! The first week is tough while we all adjust to the schedule change and working out the kinks of the daily time lines. I certainly can attest, that it doesn't make it easier when adding trips to the hospital!

We celebrated Jilly's birthday over the weekend, just as hurricane Irene approached the area. Our house decorated in Tinkerbell party decor and a small gathering of party goer's inside our home, while "Irene" began to shower us with a tropical storm outside. At that point in the day it was just a steady rain and the more severe weather came a bit later in the evening. The party was a great success and just as this 6 year old wanted! And we weathered the storm fairly well. Getting little sleep through the night as the wind gusted against our home and the electricity flickered on/off, abruptly waking the boy every time as his bi-pap machine would turn on and off with the power. We awoke still tired and slightly crabby in the morning, but our house still standing and our electricity on more than it was off, which is always a good thing.

Monday morning we were exchanging phone calls and emails trying to decide what to do with this boy of ours. When I wrote the last blog post he was on somewhat of a "high" of blood products, which we were greatly enjoying! Last Wednesday evening we removed the foley catheter, as we were instructed, and Thursday he began to "crash" from that high. By Thursday evening the bleeding had returned. His pee was containing blood, once again. Ugh! I emailed and called all the docs who needed to be notified. We were told to leave a catheter in place through the weekend and check in again on Monday. Saturday, as Jilly's party and hurricane Irene approached, his urine turned a darker shade of red. We wavered about taking him to the hospital, as we were originally told to do if the bleeding increased, but being that this issue had been going on for several weeks now and knowing that they wouldn't do any more than what was already being done here at our home, we decided we would take him to the ED should anything more change. Needless to say, we made it through the weekend and Monday morning after getting Maggie on the bus, I began to make the phone calls and emails to the docs for decisions of what exactly to do now.

In the end, we were sitting in the ED for most of the day on Monday. At one point we were even graced with the urology resident's presence...who, well. Let's just say I do believe my newly turned 6 year old has more manners than he. After stating that this wasn't his problem and not stating aloud, but making it perfectly clear to Bryan and I that he felt bothered with such a 'trivial' case, he left. So helpful! Dr. R then walked in and we passed on the message that it was all in his hands. His excitement was clear! Ok, not really, but he did his best. Hours later we left the ED with another foley catheter in place.

Maggie's first day of school went well from what I've been told of. She was a bit upset with me that I wasn't there to greet her coming off the bus. After talking it through she came around and opened up about her class. She doesn't know any of her classmates, which was a bit of a bummer for her. But she quickly made a new friend who she seems very fond of and the school days have been looking brighter, thankfully.

Tuesday was Jill's actual Birthday and she was off to her very first day of school. The time had finally come...the day that this girl had been counting down to all Summer long! She anxiously walked through the school doors, her arms being held slightly away from her body to keep her over sized pink polka dot backpack on her shoulders, carrying the container full of brownies in her hands to share with her class as her Birthday treat. The tears were very close when it came time to say goodbye for the day, as her bottom lip began to poke out and quiver, she whispered "I'm going to miss you, Mommy." I held back my own tears and gave her a big hug and a swift kiss. Assuring her that Wyatt and I would be there when she got off the bus with Maggie at the end of the day, excited to hear all about school!

After getting Maggie on the bus and Jilly to her classroom, I was able to send out a good report via email...the bleeding had stopped again. For whatever the reason, our boy's picky little bladder prefers a foley catheter! It was that afternoon that I received an email from the doc telling me that Wyatt was growing yeast in his urine and we needed to start treating it, hoping to keep it under control and from getting to his central line. The first dose of medication needed to be given in the hospital. After my own slight panic at the thought of not being home to get the girls off the bus as I promised them, Dr. R agreed we could do it the following morning. Our life is a balancing act, and at times the girls need us just as much as Wyatt. This was one of those times that I knew they both needed to see Wyatt and I when they stepped off the bus.

We now have the new round of meds started, the foley catheter is still in place and the bleeding has ceased. Wyatt's teachers came to meet our special boy yesterday and brought along a small binder containing 19 "Getting to know me!" pages. Laminated papers with a picture of each child (and teacher) with several questions and answers about their favorite things. It's perfect for him to flip through and get to know the kids in his class! We hope to visit the school next week for the first time and meet his new classmates in person, mean while the tech guys are working to get his video streaming equipment up and running so that he's able to "sign in" to his classroom from the laptop in our home. Mrs. S, his teacher, said the large TV screen and camera that has been brought into her room is generating a lot of chatter from the children, anticipating the first time Wyatt will join them in class. While Wyatt only knows two children in his class this year, we're told that all the children already know Wyatt!
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