General Medical Info
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JUNE 02 - OCTOBER 02
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Met with geneticists last Friday. All tests that can be done
with current technology have been completed and there are no concrete findings.
Most of the medical personnel are confident in the diagnosis of mitochondria,
but the specific type and prognosis will remain unidentified for the foreseeable
Stevie had a minor respiratory infection the past week or so. Had X-rays and was placed on antibiotics and hospitalization has been avoided this time around. I'm watching his rate / recurrence of infection carefully as the next step, should his susceptibility to pneumonia continue, would be a tracheotomy to fully prevent any oral secretions from entering the lungs. Fingers crossed that it won't come to that. Bought Stevie the moving robot toy pictured here and he was as delighted as he appears, although he lost interest after about five minutes.
He goes into the hospital on November 15 for extensive dental surgery. This is needed as regular visits to a dentist are out of the question for him given his specific physiological sensitivities to various chemicals and medicines, along with the absolute need to prevent aspiration of any liquids or particles. He'll be kept overnight for observation and, if all goes well, be back home the next day with a bright new smile.
Meant to update this sooner, but have been working very long hours lately. Had a very nice Labor Day weekend with Stevie and uncle Steve. The every-four-hour feedings and complicated medicine schedule is a challenge, but he seems not to mind the GI tube too much. They switched the fixed tube for a "Mickey" button last Monday -- not a fun office procedure for Stevie, but it's done. In the future, the Mickey button design allows for changing the tube (to be done every six months) without fuss or pain. Stevie's gained 10 pounds since getting out of the hospital and has regained a lot of mobility and curiosity. The increase in size, height and strength have opened up all sorts of fun and dangerous opportunities to him that could previously easily be made inaccessible to him. He must be watched and attended every second as his coordination and judgment issues make him very unpredictable. It's very tough to keep him out of trouble and danger! We hope his communication skills will come along... he still does not really respond to any sort of verbal commands, although he will sporadically and appropriately say words like "shoooes" (When it's time to put them on, for example.) He's a pretty big handful for one person at the moment, but his custodial caregivers continue to do without in-home nursing care assistance. Hopefully we'll be able to avoid any accidents or injuries. I'll have him by myself tomorrow and look forward to being with him however difficult it may be.
Stevie was well enough to start school Monday. He's in a special class for kids with severe disabilities and who do not have communication skills. They'll focus on physical and speech therapy, along with some practical things such as potty training. There are only a few such classes that will take kids who require tube feeding and other similar care, so we're lucky that a spot was available in his district. A little bus picks him up each day in his wheelchair, and drops him off at home afterwards. He seems to absolutely love it, as he has always loved school. I imagine with his recent illness he didn't know if that part of his life was over or not. So, good days at the moment. Lots of reasons for carefully tempered optimism. I'll have him weekend after next for four days, and Uncle Steve will be in town to help out. That should be great fun as he has not been able to come to my house since his hospitalization due to all the machinery that must accompany him. We continue to keep him on oxygen monitoring while sleeping, and do have to do some respiratory suction from time to time -- a task at which we are old pro's at this point. Lately, however, he has not had to use the BiPap, a very good sign.
I sat with Stevie Friday night. He slept the entire 6 hours without the aid of the BiPap and had full oxygen saturation the entire time. We've had just one instance of respiratory infection since he's been out of the hospital and the hope is that this instance was a legacy of his prior infection. Well, regarding the evening, I should say that Stevie slept for all but about 30 seconds when he opened his eyes, saw it was dad who was massaging his leg muscles and gave me a big grin before drifting off again. Nice moment.
Stevie began to crawl this week -- very exciting as there was much concern that he would not regain any mobility. Today, while at the hospital being fit for his wheelchair he suddenly decided -- with impeccable comedic timing -- that it was time to take a few steps. Needless to say, I'm overjoyed as this is the most positive development in quite some time.
Stevie feeling better from his respiratory infection, but progress following hospitalization continues to be painfully slow. While there have been the bright moments here and there, he still cannot walk, cannot stand, cannot crawl. This lack of mobility, coupled with the fact that he no longer eats by mouth certainly makes for a reduced quality of life at the moment. One can't help but wonder what he thinks about all this. As parts of his brain work relatively well (i.e., socialization), his situation makes for an odd and sometimes uncomfortable mixture of capabilities and handicaps. He's bright enough to understand his life, mobility, etc., have changed dramatically in the last few months -- yet incapable of telling us how he feels about it, or comprehending any explanations or words of consolation and support we might offer. Don't know if it's the medication or not, but sometimes it seems to take him a minute or two to recognize me now. He's always very excited when he at last does, but I'm not sure why he doesn't compute right away. Vision problems are common in kids with mito disease -- actually, there are few problems that aren't common in mitochondria -- so it may just be his eyesight.
The antibiotics have Stevie feeling better, enough so that we were pseudo "walking" him for exercise. Worn out, we leaned him on a bed rail and, lo and behold, he took hold of the rail and stood by himself... the first time since he was hospitalized. He stood there taking semi-steps (holding the rail all the while), but mostly shaking his behind in a delighted dance that displayed his joy at being upright. Ironically, he'd been fitted for a wheelchair the day before. Bright moments like that lift the spirits enormously.
Saw Stevie last night -- he's again contracted something respiratory. He's bordering on pneumonia, so we're watching him closely with the key goal of keeping him OUT of the hospital. His platelets are dangerously low, and if they continue to drop he will need a transfusion. Oddly, this time, his white cell count isn't particularly high. It was disheartening, though. I'd gotten very hopeful (yes, again) that the surgeries he just endured would take care of the respiratory issues. There is a particular mitochondrial depletion syndrome (a little different from the defects in the mDNA) that I've found and begun researching. It's rare and not well understood at this point, but he's presented quite a few of the chemical and enzyme findings. Other pathological indications are absent, i.e., atrophy or abnormalities in EEG's and CAT scans of the brain -- but apparently that's not that unusual based on his age, at least in the cases they've seen. It's the only one of the hundreds of mito disorders that seems to consistently play havoc on the lungs and respiratory tract via pneumonia and always presents early with seizures. The prognosis is generally not good, with most succumbing to pneumonia or complications in the first decade of life. Hoping I'm barking up a wrong tree. Hoping to get him some more good days. He continues to be very weak and lacks fine and gross motor skills that he had prior to this most recent hospitalization. Perked up a bunch when he saw me, though... for him that meant lifting his head off his chest, slapping his hands on the bed and eagerly letting me hold him. I rested him on my chest, he put his head down on my shoulders and just let me hold him until he fell asleep. He then needed the BiPap, and needs suctioning and chest palpitation to help with the secretions induced by fever and disease.
I think Stevie's slow progress is taking a toll on those of us caring for him. In spite of all experience to date, I know I continue to have sometimes foolishly high hopes and most wishful expectations for him. It can't seem to be helped no matter how logical one attempts to be or what medical evidence is tossed in one's face. Stevie's depakote has been reduced, with the goal of making him more active and alert and more participatory in his rehabilitation. Progress remains hard to see or measure. I do very much now live for those rare moments when it is as though a thick veil were lifted from his being. He emerges from the private world he inhabits, makes sweet, smiling eye contact and, perhaps, utters a slow, strangely distorted word that we will strain to recognize; perhaps even grant recognition where none was to be had for our own needy purposes. In those moments there is brief release from that innate, longing and powerful desire to communicate in some way, any way, with one's own child. Then, as quickly as it lifted, the veil descends, and Steven James Yray-Wasilik is once again so very far away.
Wish there was more news to report, but Stevie is largely status-quo right now. Any progress he's making is almost hard to measure. He has increasing drowsiness and a lack of responsiveness (his face doesn't really light up or register when "daddy" comes into the room anymore). Saw something like this before, and suspect either his depakote levels or his zonagram levels are too high. Not only are the doses they have him on now higher than before he went into the hospital, he's getting his meds via tube. So... no leftover medicine at the bottom of the ice-cream bowl, no half-eaten yogurt with meds mixed in, etc. He's probably getting precise and timely dosages for the first time ever. Having spoken with other parents in similar situations, they all say that as much of a shock as the g-tube is, it does have some strong advantages for kids like Stevie James. Saw him last night and today, but he was pretty much out of it. Breathing continued to sound good, though.
Stevie is pretty much supine at this point. He can only hold his head upright for brief periods and is quite a way away from placing any weight on his legs. He also still needs to regain strength in his arms before he can even crawl. Grandma Ginny and I bought him two new pairs of shoes -- our silent protest and disagreement with the doctors who are saying he'll need a wheel chair. I'm virtually certain he will not. He's been this weak and worse in the past, and there's nothing neurological that's happened to change any of his physical abilities. Six weeks in a hospital bed under heavy sedation simply takes all one's strength away. The great news is his airway. His breathing is so effortless and absent of stridors (harsh noises during respiration due to any kind of airway passage obstruction) -- haven't heard his respiration sound this good since before his hospitalization last fall. It's a great sound to hear him sleeping and breathing deeply without any congestion -- a sound I'm sure most parents take for granted. Grandma Ginny and I just listened to him breathe for about half-an-hour, marveling at how good he sounds and the hope that offers in terms of his overall healing process. Mom flies home Monday. Her "Hullinger" can-do and emotional reserves will be missed -- but I guess I've got some of that blood in me as well. If not... I'd appreciate it if one of you would clue me in on the family secret.
At last, Stevie goes home again. He's now set up for a version of home nursing care. He has a BiPap machine that he will use at night to help him breathe. He has oxygen saturation monitoring as he's had issues there and a suction machine for the times we need to clear his upper airway. All stuff with which we've had lots of hands-on experience, so the accompanying training is largely redundant. And, of course, he has the gastronomy tube for feeding and medications, which we are less used to. Lots of oral care will be needed as he'll no longer have any stimulation from intake of food or liquids. This oral care is very important as the natural processes of salivation, etc., involved in eating also deal with many disease processes. Additionally, the taste buds may atrophy and permanently lose much of their capabilities. As we hope the g-tube isn't forever, we want to make sure this doesn't happen. I've taken today and tomorrow off from work at the last minute (actually, I was to be off today, as mom and I would have returned from France this afternoon). Woke up today feeling as though I hadn't slept, in spite of what the clock said. This, a now-familiar byproduct of lack of R.E.M. sleep caused by staying with Stevie in the hospital -- and the routine awakenings from nurses doing their duties and from Stevie being restless. I'm now aware now that emotional relief does not accompany hospital release in cases with kids who, for the moment at least, seem to be in kind of a downward spiral in spite of medical care -- so I'm better prepared for that this time around. The process now begins of assessing who the little boy is today vs. the little boy who went into the hospital. Stevie is quite weak, but regaining strength. He seems to have lost additional control of some facial muscles. Unlike his last release in December, however, he recognizes friends and families and offers them smiles and his vocal version of "hi." All these, of course, big, big, plusses.
Some additional high heart rate issues with Stevie, (He ran up to 195 bpm the other night... frighteningly and dangerously high, even for a four-year-old). This was perhaps due to fever (102.2F axillary... so probably more like 103.5 rectal) or, perhaps due to something else that we have yet to uncover. That notwithstanding, he may (emphasis on "may") be released Monday. Taking no bets and placing no expectations. Grandma Ginny spent the day with him yesterday, and he showed improving strength and was able to get up on his hands and knees for the first time in six weeks. He's restless, active and angry about being cooped up. All good signs.
Spent the night again with Stevie. He had some problems maintaining oxygen levels, even with the BiPap on at night. Additionally, at one point, his heart rate soared to 160+ beats a minute and remained there for some time. No obvious cause -- and the sono-cardiogram that had been done a week ago had reported nothing unusual about his heart (a concern in mito cases). The G-tube has healed well. It is so bizarre to feed him throug a vial that connects to a tube that attaches to a "portal" in his stomach. It seems as though we've dehumanized him somehow and to some degree. Taken away something that is natural and human and replaced it with a mechanical device. I imagine we'll get used to it in time -- and there's the hope that it's temporary -- but it's just plain disturbing at this point, no other way to put it.
6/16/02 Father's Day
Stevie was quite restless last night and required constant soothing to distract him from his pain. Ultimately, as it was annoying him greatly, I removed his oxygen mask for a moment. I intended to watch his oxygen saturation and put the mask back on as soon as it dropped. Behold! It remained at 100%. I noted it to the nurse to see if he had a problem with me leaving it off, as Stevie had calmed down greatly. No issue there. After an hour, the respiratory therapist noted how well he was doing sans mask, consulted the resident, and it was determined he did not need the BiPap for the night. His first post-surgerical bowel movement was a great relief (pun intended), as intestinal blockage is a concern following the procedures he had. About 2:00a.m., after I massaged his gums, he had one of the most restful sleeps he's had in weeks. Discovered this morning a suspicious potential cause for his agitation: They had failed to write an order for his clorazepate (anti-seizure med) 4 x per day as normal. He was only getting it once, at night. So, the poor kid was in withdrawal. I wish I could say that such oversights are unusual and amazing, but they no longer are to me. They are routine. One seems obliged to read his charts constantly and play doctor, as they seem to have their minds on less important matters. Yes, I know, a tad bitter... but justified, I believe. He is OUT of intensive care and in the critical care ward (a step for the better). If he continues on his present course (by no means a given), he could be released this week.