Friday, January 28, 2011

A boy and his bear.

Today was surgery day. 
The patient? Big Bear.
First things first, he needed his "silly juice", which was carefully given by the attending anestesiologist. 
It worked quickly and Big Bear became very silly. And then fell asleep.
 The first procedure was placing a G-tube. The GJ tube was preferred, however they're currently low on availability and we were forced to use what was on hand at the time of surgery. The request for green stitches was completed.
We quickly began to work on the second procedure that was needed; a central line. It was decided that he would have a PICC line. 
He tolerated the procedure well, but did need a little help keeping his oxygen saturations up to an acceptable level. He was put on a small amount of O2 via nasal cannula to give him a boost.
I'm happy to report that Big Bear did very well coming out of his light sedation and currently has minimal pain. He was attended to very intently by nurse Jilly. He's receiving extra fluids and his g-tube is draining, though we will be keeping an eye on the amount of stuffing he puts out through the day. 
He's receiving extra snuggles and his owner, the anestesiologist, is happy with the outcome.

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Saturday, January 22, 2011

An update from home.

We arrived home late this afternoon, after stopping by the pharmacy to drop off new prescriptions. We didn't accomplish all that we set out to in the beginning of this admission, but were close and there were some needed adjustments made.

Wyatt had a double lumen PICC line placed yesterday afternoon which will allow us to easily run TPN and saline boluses simultaneously. The saline (IV fluids) will be given in an effort to replace the fluids which he loses each day in his G-tube drainage. It's funny this intricate little system of his. His labs didn't initially look horrendous, like originally feared. But his body was showing the stress of dehydration in several noticeable ways. They started running saline through his line Thursday evening. Yesterday he was looking perkier and tolerated the PICC line procedure well, but was not urinating. The docs were slightly puzzled as to why his body was holding onto the fluids....his body obviously has it's own plan, but last night everything balanced out. This morning our boy woke up so peppy, happy, talkative and his lips were not chapped and bleeding for the first time in weeks. And he was peeing off the fluid. Those chapped lips were a constant battle that I've been trying my hardest to conquer...from chap sticks, to lip repair solutions to the oral moisturizing gels and sprays. His lips looked so good this morning. It's amazing what optimal hydration will do for a boy, even down to the lips!

In addition to hydration, the doctors focused on his medicines. Trying to weed through the list to widdle them down, one by one, packing it all into the smallest volume dose for his needs. Or, if compatible with TPN, they were switched and added that way. There will be some tweaking that needs to be done, but what could easily be done was.

Octreotide, the medication that we were originally told about and thought we were going to try while admitted was put on a shelf for possible use later. I'm not exactly sure why the hesitation in using it, I do know there was some concern about the serious side effects and how Wyatt's body would react, but we will be discussing it with his GI doctor here and with Dr. F in a short couple of weeks.

During this visit, we were able to meet with the new neurologist at the hospital, one that we've been told about, "The metabolics guy". And he was great. Clearly knowledgeable of Mitochondrial disease and talked to us about the situation a bit. I've found it's helpful just talking with someone who knows about this path that's involved with Mito. Not needing to offer anything more than their knowledge. Maybe it's the validation, recognition and understanding, that what we are seeing within our boy makes sense. We've been sent down this path for so many years and have heard "I don't know" so many times, been prepared by many that we may never know the name of what our son's body is so furiously battling against...and now we do. And to some, it does make sense, finally.

One sweet surprise to our evening yesterday was a spontaneous visit from a lovely family.  A family that's travelling a very similar path to our own. At first glance, as I was laying upon the parent cot and thinking about how tired I really was, I initially thought they may be our new roomates as they cautiously entered our room. But was pleasantly surprised. I feel as if I could have talked with this couple all evening....finding our experiences and stories different, yet so much a like. This friendly visit was just what I needed.



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Thursday, January 20, 2011

Admitted.

So here we sit in a very familiar room. Wyatt was admitted to the hospital this afternoon. He's ok, he's stable and feeling pretty good. In fact, he's currently sitting in his wheelchair sculpting play dough to its perfection, creating an amusement park on the tray, while enjoying the Disney channel. The doctors want to watch the amounts that are draining from his g-tube closely and come up with a plan to replace the fluids lost. He's been draining, on average, 800mls of bile per day. Some days more, some days slightly less. We've also talked about switching what medicines we can to IV form to alleviate the large volume and give his gut a full rest to heal.

Yesterday I received a call from our GI doctor saying she reviewed all of his past xrays and compared them to the most recent scans. She then reviewed them together with the radiologists until they were all in agreement with what was being seen. His small intestine is inflamed, swollen, the whole length of where the J-tube is lying. At first the talk was of pulling the J-tube and allowing the area to heal, however after discussing this course of action and having the concern of not being able to get his meds into him (and staying in) it was decided that wouldn't be the safest plan. There was also the risk of removing the tube and having the small intestine swell closed, as the J-tube is currently holding it open. So, right now the J-tube will stay right where it is. Dr. F, in Boston, was consulted and his opinion has been taken into account. The thought that we're hearing is to keep him as stable as possible so that we can get to Boston. There is a lot of hope going into this upcoming trip to Boston and Dr. F's wisdom.

At the moment, the plan is to re-wire a double lumen PICC line tomorrow afternoon, he currently only has a single lumen. The double lumen is needed to run fluids and or medications at the same time the TPN is running....at least that's how I understand it. There has also been talk of possibly starting a new medication, octreotide, to help lessen the amount of output.

So, here we are in our good ol' trusty wing of the hospital. Waiting, watching and settling in for the evening.
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Tuesday, January 18, 2011

Results.

Just a quick update on the CT scan. I talked with the GI doctor and there are two areas of concern, one in the small intestine and another where the small and large intestine connect. The thought is that this is an infection that is causing the large amount of swelling and other factors that are present. He has already started (on Friday) the antibiotics and we're now instructed to watch him closely. With his central line and an infection within his body, it's important that we treat aggressively and quickly. He's uncomfortable and not feeling well, but we are unable to give him pain meds because of the complication of slowing down his GI tract more (and potentially allowing the infection to rage out of control). There will be another round of xrays and tests a few days after stopping the antibiotics. And if the areas of concern are still present the GI doctor will proceed to further testing. There is another possibility that can cause inflammation and such, but we will cross that bridge if we get to it, after infection has been completely ruled out.
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Brave Boy.

Wyatt did very well yesterday throughout the CT scan. He was initially concerned and bothered by the fact that even with his PICC line that his TPN flows through, they had to place another IV in the other arm. But that really was the worst of it. We made light of the fact that the CT scan looks like a big doughnut and the nurse played up the part of the test that would make him feel warm, as if he was in Florida. Which then just set us on a path of talking about Florida and Disney World, of course! Somehow, all tests end with us talking of Disney World....the happiest place on earth! Those of you that were keeping him in thought and prayer through the afternoon, thank you. Thank you very much!

Now we wait until the doctor calls and tells us what the results are....
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Monday, January 17, 2011

A day in the life of an exceptional 8 year old...

On Friday afternoon we arrived at the Medical imaging area of the hospital, where Wyatt had an abdominal xray. We are certainly not new to this area of the hospital, he has had and continues to have numerous imaging tests looking for clues to what is happening inside this delicate body of his. Late Friday afternoon, upon arriving home, we received a call from his GI doctor. They found something in his large bowel, a large dilated loop, filled with air and showing that the intestinal wall was thickened. I asked what 'thickened' meant and was told it can mean swelling and or inflammation. The GI chose her words carefully and was clearly not happy that it was end of the day Friday, which would inhibit us from completing any testing until Monday. Prescriptions were quickly called in and antibiotics started, in case it's related to an infection. The doctor went back and forth on which test to order, an MRI or CT scan. Wyatt is typically sedated for this type of testing. At this time he's unable to be safely sedated as his medical status is too complex at the moment. It was decided a CT scan would be easier for him...it's shorter in length and not as noisy or scary as an MRI. I promptly called medical imaging again and set up a CT scan for today, Monday, at 2:30pm. Bryan and I have talked to him and tried to prepare him. His nurse that was here this morning drawing labs and changing the dressing to his line explained to him what a CT scan is like. But he's nervous. Please say a prayer or think positive thoughts for him this afternoon, that he can get through this scan with as minimal fear and anxiety as possible. For a child that has been through as much as he has, he has an understandable anxiety about certain situations and such tests.
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Tuesday, January 11, 2011

Round and round we go. Where we'll stop....well, who knows.

The boy and his GI system. Need I say more? This system of his is just not happy with even the minute amount of formula we try dripping into it. As I stated in previous posts, this small amount of formula, referred to as trophic feedings, is to help his liver cope and function amidst the added stress of TPN.

We're currently starting another medication to help with motility. It's a med that we used with little success prior to starting TPN. We're hoping it will help push through the large amounts of bile that's currently backing up into his stomach and draining out of his G-tube. While starting this new med, we have been instructed to stop the trophic feedings, chart output from the G-tube and then restart feeding through the J-tube at 5ml/hr (down from the miserable 7ml/hr that he has been battling the past few weeks) after we have gotten this med well in his system.


This break in enteral feedings has at least left this young boy feeling as pain free as he gets, which does us all good. Maybe this added medication will do the trick this time, maybe it will do what we were hoping it would do the first time it was tried....we can hope.

On an extra good note, his labs from last week are showing improvement in all areas. Are you celebrating with me?! Wooohooo!


This morning we had an impromptu appointment with the seating clinic at 'our' hospital. These appointments are the easy type. It's helping, picking things out that will hopefully help him in one way or another. We can't fix his body or create a magic potion to take away all his pain and discomfort, but I will do everything in my power to find ways to help him. Whether that is adapting our home and or routine, battling insurance for needed equipment or trudging my way through the school system, I will be doing it. That is something I can do!


During our early morning appointment we covered much more than I was thinking would be discussed. We were very pleased and felt it to be a very productive meeting. We'll be ordering several items this year....an activity chair with a hi/low base for seating within our home, a tray for his wheelchair and newly angled foot rests and (once we get the script for it) an adjustable hospital bed. The last one is something that I'm slightly hesitant about, only because of it's title...hospital bed. That sounds intimidating and concerning to me, but after talking it through with our contacts at the clinic, it's worth a try. Wyatt has been disliking the bed he is sleeping in now. So much so, that he was asking to to go the mattress store on New Years day. Apparently they were having a "big New Years SALE" and Wyatt caught the commercial on TV. He gets very excited about the thought of a comfy bed and the possibility of being more comfortable. However, we're thinking a mattress in a store won't cut it for him. He complains of discomfort in other mattresses that he sleeps on, as well, not just the one in his room. He says the most comfortable beds are in the hospital. I have to say, I have not heard that same sentiment from many other people! We're thinking it's the adjustability and capability of positioning. It does make sense. So, for him and for the sake of his comfort and restful sleep, of course, we'll go that route if it's thought to be best. So, I have a few emails to make (one for the script)! And then comes the hoping, praying, crossing fingers and doing everything in our power to will the insurance to approve all that is asked of them on the first try! Is that too much to ask? If I'm gonna dream, I'm gonna dream big!

Mommy - "Jill, do we think trying to ride the kick board down the icy slide is a good idea?" 
Jilly, very enthusiastically- "YEAH!"

In our neck of the woods, it snowed last weekend. Not enough to really get into playing, but the kids enjoyed throwing snowballs and romping through the slushy white stuff. This evening, it's snowing again and it's forecasted to be more than last. A snow day tomorrow, perhaps? We'll see.
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Wednesday, January 5, 2011

The thinks you can think.

 
Think left and think right and think low and think high. 
Oh, the thinks you can think up if only you try! 
~ Dr. Seuss, Oh, the Thinks You Can Think!~
 
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