Perspective

“We don’t see things as they are, we see them as we are”
Anais Nin

From where you are, you have all insisted that I made the best decision under the circumstances. The amount of confidence you have in me is a little scary, but I certainly appreciate your support. From where I am, as someone who is very tired and very angry, I guess I’m focusing on all the wrong things. I don’t recall being this angry since Jack left the PICU 7 years ago attached to a bunch of equipment he didn’t have when he entered the hospital. I always believed that when you left a hospital you were supposed to be better off than when you entered. I suppose what constitutes “better off” is all a matter of perspective. In any event, I need to get to a “happy” place and try and remember why we had the surgery done in the first place. It’s time for a major attitude adjustment!

The picture is of Jack getting his nightly head massage from me. He loves his head massages. The other one is of Mary doing what we do around our house for fun … race around in wheelchairs :-)

Have a great week!

Comparison

X-ray #1 is Jack
X-ray #2 is Anthony

My friend's son, Anthony, had a spinal fusion surgery done less than 2 weeks ago at UMass Medical Center. She gave me permission to share his x-ray. Anthony's surgeon used the wires that our local ortho would have used if we'd had the surgery done here. I might add that Anthony is home from the hospital, requires no body brace and is SITTING in his wheelchair already.

Okay, I will admit that comparing Jack and Anthony is like comparing apples to oranges. Jack has a neuromuscular disease, "extremely poor bone quality" (to quote the operative summary) and had a 90 degree curve (corrected to 52). Anthony has CP, better bone quality than Jack and had a 70 degree curve (corrected to 20). But, I thought it interesting to show the difference in techniques and the recovery period. It makes no sense to make myself crazy over this whole thing, but I am. I might also add that Anthony had a compassionate and personable orthopedic surgeon and Jack did not -- which is no doubt the crux of why I am having such a difficult time coming to terms with what was done to Jack and whether it was in fact the "best" procedure for him. Maybe if I'd had a surgeon with a little compassion and empathy, I'd be comfortable with my decision. Anyway, it is what it is. I'm just glad Anthony is doing so well and just a little ticked off that Jack's been through hell and he's still not where he needs to be.

There, I feel so much better now!

Thanks

Just a note of thanks for continuing to check in on Jack and for leaving comments (thanks too if you only check in, but don't leave comments). It means so much to know that you all care about us! Nothing new to report, Jack continues to lay in his bed 24/7 and be happy. Come to think of it, being confined to bed for a few months doesn't sound so bad after all! Where do I sign up?

************
Pat, I'd love that Rx for Hawaii :-)

Haircut

Jack got a much needed haircut yesterday. Thanks Michelle!

"Good Times"

As I was driving to work this morning, I was thinking about my comment in my prior entry regarding how long the "good times" will last (I drive close to a hundred miles a day by the time I get my kids to school, get to work and back home, so there is a lot of time for thinking). I would never have believed 8 years ago that having a child with a debilitating disease, lying in bed unable to move, hooked to a ventilator, unable to eat or breathe on his own . . . but having good "numbers" and a smile on his face would equate to "good times". Life is just so warped, you know?

In any event, the "good times" continue because Jack's x-ray looked marvelous. The ortho's comment was "that's a LOT of screws". He did say that Jack should be able to get out of the body brace in two months . . . before Christmas. Yea! More "good times".

Wishing all of you "good times" ... whatever that may be in your world.

**Even more good times - we received authorization today from Medicaid as secondary insurance (primary insurance already approved 2 months ago) for a ceiling mounted track lift system for Jack. That is HUGE "good times" in MY world :-)

Patience

"I am extraordinarily patient, provided I get my own way in the end"
(Margaret Thatcher)

Some truth to the above quote. Problem is, I have to keep redefining what "my way" is. I think I'm now on Plan "H", at least. I suppose that's life, eh?

I am exceedingly tired of "hurry up and wait". It's been 7+ long years of waiting for something. Yet again, here we sit, going nowhere fast ... waiting for the months to pass so Jack can sit up in his wheelchair and "engage" in life again. I can't wrap my head around the fact that Jack has been flat on his back since July 28th. I'm not sure why it bothers me so much, Jack doesn't seem to have a problem with it! Jack continues to be happy and content. He is doing awesome from a medical standpoint -- no signs of infection, his O2 sats have been consistently 100% and his heartrate is back to his baseline - all signs that he is comfortable and feeling good. I've been told to be patient because there is a light at the end of this tunnel ... I just fear that it might be that of an oncoming train :-) The pessimist in me (or perhaps the realist) is wondering just how long the "good times" will last.

Jack sees our local ortho this coming Wednesday for an x-ray, which will be sent to our St. Louis ortho. I'm anxious to get an x-ray, as I want to be assured that the hardware is still where it is supposed to be and nothing has shifted or broken off. We've got an appointment with the general surgeon in a few weeks to talk about getting the broviac out. When I called to get an appointment, the person on the phone asked if I could get the records from St. Louis to them. Yeah, right ... if you've got room for a few shelves of records. I just laughed and told her that they really don't need the records as I can give the doctor all the information he needs.

I'm hoping to get the "ok" from the St. Louis ortho to get Jack out of his full body jacket by Christmas. If we can cut off the portion that stabilizes his leg and just keep him in the torso part, we can get him up in his chair. All my siblings will be home for Christmas this year -- I have two brothers and a sister who live out of state (and two sisters who live here in Phoenix). Between us, we have 19 kids! This will be the first time we've all been home in about 15 years and most of us have doubled our families since that time. Of course, we want to have a family portrait done, but if Jack can't sit in his wheelchair, I'm not sure how he can be in the picture. I've got to believe he can get out of the full body brace by then.

The pictures are from this past week. I so badly want to pick Jack up and hold him. It's so hard not to be able to wrap my arms around him. I've got to be content with simply holding his hand right now. I know ..... patience ............

Lazy Sunday

Not too much excitement going on at the Schrooten house, which is always a good thing. Jack is doing well and is through with the IV Vanc. The plan when we left St. Louis was to follow-up the 6 week course of Vanc with 11 months of an oral antibiotic. However, since a specific source of infection was never identified, since his bandemia and other indications of infection were on their way down before we even (reluctantly) agreed to put in the broviac and because we don't have the orthopedic docs "in our face" forcing us to put him on antibiotics, we've decided to forego the prophylatic oral antibiotics. This decision isn't made easily and, if we are wrong and there is an infection in his hardware, I suspect something should show up soon that would let us know. However, I'm very comfortable with the decision. As far as getting the broviac out, I'm going to call this week and try and get something scheduled for about a month out. My biggest stressor is making sure when he goes back to the operating room to have the broviac removed that everyone in the room understands that they can't just pick him up and move him to the table, that he must be moved in a specific way and handled very carefully. I figure the only way I'll get them to listen to me is to bring his post-spinal fusion x-rays. That should do it, don't you think? I know Jack isn't breakable, but I've got to believe there is a reason the ortho in St. Louis wants him flat on his back for 6 months. I'm already stressed out about this and I haven't even met the surgeon yet. I so want to be through with doctors and medical stuff!

My latest challenge has been with the school district which is not timely providing Jack with the services he is entitled to under his IEP. I'm sending off a complaint to the Department of Education tomorrow. I really don't have the time or energy to deal with this kind of thing, but it's not fair to Jack to ignore it and it's wrong for the school district to get away with it. I do tire of always having to advocate ... wouldn't it be nice if people would just do what they are supposed to?

I posted a few pictures of the kids doing what they do on a lazy Sunday. Jack hanging out on the couch watching the Rams-Cardinals football game, Mary reading a book, Hilary on the computer and Eric stuffing his face with Cheetos (and why is my kid eating Cheetos in a white shirt???). Time for me to start the laundry.

Have a great week.

I Can Only Imagine

For those of you who may not have seen this video about the remarkable father and son team of Dick and Rick Hoyt ... I just have to share. You'll need 4:13 minutes and a box of Kleenex.

CAN

If you haven't heard the story ...

Eighty-five times Dick Hoyt has pushed his disabled son, Rick, 26.2 miles in marathons. Eight times he's not only pushed him 26.2 miles in a wheelchair but also towed him 2.4 miles in a dinghy while swimming and pedaled him 112 miles in a seat on the handlbars -- all in the same day. Dick has also pulled him cross-country skiing, taken him on his back mountain climbing and once hauled him accross the U.S. on a bike. And what has Rick done for his father? Not much -- except save his life.

The love story began in Winchester, Mass., 43 years ago, when Rick was strangled by the umbilical cord during birth, leaving him brain-damaged and unable to control his limbs. "He'll be a vegetable the rest of his life" Dick says doctors told him and his wife, Judy, when Rick was nine months old. "Put him in an institution". But, the Hoyts weren't buying it. They noticed the way Rick's eyes followed them around the room. When Rick was 11 they took him to the engineering department at Tufts University and asked if there was anything to help the boy communicate. "No way" Dick says he was told. "There's nothing going on in his brain." "Tell him a joke," Dick countered. They did. Rick laughed. Turns out a lot was going on in his brain. Rigged with a computer that allowed him to control the cursor by touching a switch with the side of his head, Rick was finally able to communicate. First words? "Go Bruins!" After a high school classmate was paralyzed in an accident and the school organized a charity run for him, Rick pecked out "Dad, I want to do that." Yeah right. How was Dick, a self described "porker" who never ran more than a mile at a time, going to push his son five miles? Still, he tried. That day changed Rick's life. "Dad" he typed, "when we were running, it felt like I wasn't disabled anymore." That sentence changed Dick's life. He became obsessed with giving Rick that feeling as often as he could. He got into such hard-belly shape that he and Rick were ready to try the 1979 Boston Marathon. "No way" Dick was told by a race official. The Hoyts weren't quite a single runner, and they weren't quite a wheelchair competitor. For a few years, Dick and Rick just joined the massive field and ran anyway, then they found a way to get into the race officially -- in 1983 they ran another marathon so fast they made the qualifying time for Boston the following year. Then someone said "Hey, Dick, why not a triathalon?". How's a guy who never learned to swim and hadn't ridden a bike since he was six going to haul his 110-pound kid through a triathlon? Still, Dick tried. Now they've done 12 triathlons, including four grueling 15-hour Ironmans in Hawaii. When asked why not try and see how he'd do it on his own, Dick said "no way". Dick does it purely for the awesome feeling he gets seeing Rick with a smile as they run, swim and ride together.

Two years ago Dick had a mild heart attack during a race. Doctors found that one of his arteries was 95% clogged. The doctor told Dick that if he hadn't been in such great shape, he probably would have died 15 years ago. So, in a way, Dick and Rick saved each other's life. Rick who has his own apartment (and receives home care) works in Boston, and Dick, retired from the military and living nearby, find ways to be together. They give speeches around the country and compete in some backbreaking race every weekend, including Father's Day. That night, Rick will by his dad dinner, but the thing he really wants to give him is a gift he can never buy. "The thing I'd most like" Rick types, "is that my dad sit in the chair and I push him once".

Three more days

Only three more days of IV Vancomycin. Yeah!! Mark will be so happy. Since Mark was at the hospital when they did the training on the broviac, he got to learn how to care for it and administer the vanc -- so, I figured I'd pass on the training and let Mark handle it. I haven't had to deal with the broviac/IV meds at all. It's unusual for me to give up just a bit of "control" and for Mark to handle a "nursing" task. As Mark will be the first to tell you, eight years ago he would get lightheaded just walking into a hospital .... now look at all he can do!

Jack's broviac site looks marvelous ... thanks for crossing all appendages on his behalf (and for the prayers too). As for how long the broviac will stay in - I'll request for at least another month just to make sure he doesn't spike a fever or give us any other indication that there is still an infection somewhere in his body. I'm not sure who will take it out. I'm going to ask for a CT surgeon since a CT surgeon put it in. I'll have to see what my pediatrician has to say. I suspect it will be near impossible to find someone to take it out -- since they won't want to touch someone else's "work".

I got an email from Jack's neurologist today asking if I'd give consent for her to check a sample of Jack's DNA from his frozen muscle sample that she has been saving in her lab. She is going to look for a gene mutation in a particular protein. I think it is awesome that she still has Jack in the back of her mind and continues to try and figure him out. She said they will be sequencing the whole gene so it will take at least six months before I'll hear if there is a defect in the gene. At the end of the day, it is just "information" ... something I so desperately wanted 8 years ago. It doesn't mean so much to me today. But, it might help someone, somewhere along the way.

Jack is very happy these days. If only I could capture 1/100th of his patience and contentment with life ....

I'll post some updated pictures soon.

The "E-Man"

Eric got his new glasses today! I know, it's been almost 2 months since he saw the ophthalmologist in St. Louis, but I've been a bit preoccupied. He was too funny when he first put them on, it was if he was seeing for the first time. Now he just says everything looks "floaty".

Speaking of Eric ... I got a phone call last night from his teacher. It's not a good sign of things to come when your preschooler is already getting calls to the parents. It seems that Eric has been trying to sneak toys out of his classroom -- under his shirt -- to bring home. He's been caught twice now! Good grief, it's not as if he doesn't have enough toys of his own.

I suppose it might have something to do with the chaos of the last two months and all the attention that has been paid to Jack. Although, it's par for the course for Jack to get most of the attention in our house. Who knows how all this Jack stuff will affect my other kids long term, but I guess I'd better start looking into military schools for Eric now :-)

On the Jack front ... I almost hate to post this, but we've encountered another "problem". The area where Jack's broviac enters his chest is *slightly* red and with a little bit of puss. Ugh! Jack's disposition is fine and he has no fever. So, at this point, we are treating it with a topical antibiotic ointment and hoping it might have something to do with being in the body jacket yesterday and perhaps rubbing against the stitches holding the line in place. We'll see how it looks tomorrow. I'm scared to call my pediatrician because I don't want to hear him tell us Jack needs to go to the ER. Don't worry, if I thought Jack looked *bad* because of this, I wouldn't hesitate to make the call. Please keep your fingers and toes crossed that this resolves without medical intervention.

Ciao and goodnight.

All is well

The ortho said the bumps on Jack's back are his spinous processes and not hardware. Phew! The ortho thought the body brace was a bit much and he thinks it's crazy to keep him in the body brace and in a reclining position for 6 months. I'm just not sure I want to rock the boat though ... I think I'll stick with the St. Louis ortho's protocol at this point. The orthotist bubbled out the area in Jack's body brace where the bumps were hitting and we're good to go.

Jack's pediatrician had them do yet another blood draw yesterday because he still wasn't sure about the numbers. I guess they need to hit him over the head before he will believe them. His potassium is low - which makes sense because it was low in the hospital and he was getting supplemental potassium there. "C-diff" has also been mentioned. Which would also explain the low potassium. It's just a vicious cycle when you are on meds, which is why I've always been opposed to any type of maintenance meds and why I stay away from doctors!

This too shall pass ................

Pictures from today are Jack getting put in the car - poor kid, it looks like he is being restrained and he hasn't done a thing wrong. The other one is happy Jack after we got home and he got out of the dreadful body brace. His hair is almost long enough to put in a ponytail.

**Michelle (Jack's personal hair stylist :-) -- can you think of any way to cut Jack's hair while he is laying down??

That's the update from here. Thanks for checking in.

We're off to see the orthopod ....

I emailed Jack's St. Louis ortho today because the "bumps" on Jack's back are making me very nervous. They just don't feel like something that belongs there (ie. the spinous processes) - they are not smooth and are almost pointy and they seem to be sticking out more with each passing day. What if it is hardware ... what then? Anyway, I mentioned all of this to the ortho and asked if he thought Jack should be seen by our local doc sooner than next month, to which he replied he should be seen this week. Jack's local ortho fit him in first thing Wed. morning. After that appointment, it's off to the orthotist's office, who also gratiously agreed to fit us in. When I called and asked if there was any possibility our orthotist could see Jack, I was told "for Jack, Brett would do anything". How awesome is that?!

My pediatrician called and said he doesn't believe any of the numbers from Jack's most recent labs are accurate, so he ordered more labs today. He said all Jack's labs should be "stat" because if the blood sits around for any length of time, the results can be messed up. I called home when the nurse came to draw the blood and asked if they knew it was a stat order. He said that the doctor's orders didn't say stat. Hmmmm... In any event, he said he was headed directly to the lab. Let's hope Jack's numbers are all good.

On a very sad note, my friend ... Bob Cimarelli passed away today from pancreatic cancer. He has two young children who will miss their daddy greatly. Go fly with the angels my friend.

Update

Sorry for the break in updates. Nothing really exciting going on ... which is a good thing. I did email a picture of Jack's back showing the bumps sticking out to his ortho in St. Louis. He emailed me back saying that he reviewed Jack's x-rays and the picture and he thinks it's probably Jack's spinous processes (you'll have to google that if you want to know what it is :-), but it could be the spinal implants - although less likely. He wants us to see our local ortho to have it checked out (and then what???) We have an appointment in October with our local ortho and I don't really see any urgency in having it looked at sooner. The ortho also pointed out that we need to make sure he doesn't get pressure sores on those areas because as he says "if the spine implants are becoming prominent as the swelling subsides and the skin would breakdown the implants would become infected. We both know what that would mean for Jack." Yikes! Guess we'll have to watch those areas very closely. I do not want any more complications!

I got a call first thing this morning from Apria telling me they got the labs back and Jack's blood sugar is "critically" low. The woman asked me how he was doing. I wanted to say "oh my gosh, just terrible, he is flat on his back in bed and hooked up to life support". But, I didn't think she'd find the humor in it! I just got a call from our pediatrician's office and, of course, our doc isn't in this weekend and the guy who called hasn't a clue what is going on or why they are drawing the labs. He said there could be a lot of reasons for low blood sugar. I told him Jack was fine and he was okay with that answer. He also said Jack's vanc levels are now a little low. I asked about some other numbers that were elevated last time that are indicative of an infection. They are higher than last week. Ugh! He suggested I call the ID docs in St. Louis and give them this information. Yeah, right ... I'll get the on-call doc who likewise won't have a clue what is going on and will wonder why I am calling St.Louis when I live in Phoenix. It's not worth the hassle and it's unlikely they'd do anything with the information on a weekend. Our regular ped will be in on Monday, we'll see what he has to say, but I suspect there will be changes to his vanc dosage and who knows what else next week.

Not much else going on here. Mary is at Irish dance practice, Mark is out running errands, Hilary is on the computer, Eric is harrassing the dog and Jack is watching videos. My house is a disaster, but I just have no energy to clean. I am definitely in need of a swift kick in the pants to get me motivated to get up and move.

Hope you all are having a nice weekend!

*Cindy ... I crave "normal" :-)

I really didn't need to know

I spoke with Jack's local orthopedic surgeon today because he will be doing the follow-up x-rays and sending them off to the ortho in St. Louis. I told him about the surgery, the complications, the recovery plan and what is going on with Jack as of now. His words were "sounds like they threw the whole kitchen sink at him". He went on to tell me that he doesn't use screws with his neuromuscular kids -- he uses wires (sounds so much more tolerable) nor would he have braced Jack - which means that Jack would be able to sit up by now if we'd had the surgery done here. When I mentioned about the traction they put Jack in to do the surgery -- he acknowedged that "some places still do that". Guess he doesn't "rack-um" either. It never really occurred to me that there would be completely different operations/approaches to solving Jack's scoliosis problem. I guess it's shame on me for not asking enough questions. Not sure I needed to know the information I got today. At the end of the day, if Jack "survives" this whole recovery period and can sit up in his chair at the end of six months, it won't matter. If he can't, well ... I won't even go there yet. I do have to say I so much prefer the personality of the surgeon here in Phoenix and when I told him that we're not going back to St. Louis, he said, jokingly ... "so, I get him by default". I guess he does! Fortunately, he is a very easy going guy with no arrogance about him.

Jack is back to getting his OT this week and he is very glad to be doing his "work" again according to his therapist. We're counting the days until we can be done with the IV vanc and get the broviac out. We will probably get Jack out of bed sometime this week to give him a change of scenery.

Have a good evening and thanks for checking in.

On a happier note . . .

Meandering thoughts

Jack is doing "OK" ... mom is feeling "blah". We've been home for a week now - plenty of time to get settled back into the normal routine of life. Problem is, I'm having a heck of a time getting there. I find myself constantly lost in my thoughts, unable to focus and just not being very productive. My philosophy of life has generally been "$h#t happens - so just deal with it". Yet these days, I'm finding it much more difficult to "deal with it". Every morning I pass the same sign on my way to work that lets me know that the turn off to Interstate 8 and San Diego is only a few miles up the road from my exit. You have no idea how much I want to keep on driving until I hit the sandy beach! If only it was possible to truly escape from it all.

Before this last year, my "claim to fame" had been my ability to keep Jack out of the hospital and away from doctors. No small feat for a child with all of Jack's issues. It's not that I don't like doctors ... for the most part, I think doctors are terrific people. However, spending too much time around medical people forces the realization that Jack isn't a typical kid and I don't live a typical life. You may wonder how I could think otherwise given Jack's obvious medical interventions, but you would be surprised how easy it is to be blinded to what you don't want to see, especially when - on the surface - my days are much like everyone else's. I get up every morning, get myself ready for work, drag three kids out of bed, shove breakfast in them, make lunches for school, argue with them to brush their teeth and struggle to get them into the car so that we can pull out of the driveway before the clock strikes 7:11 am. The difference is, I am greeted every morning by a nurse (Mary Poppins, actually!) and I leave my house without one of my children, as he sleeps innocently unaware of the morning chaos, with little understanding of what the world is like outside of his protected universe. Okay, so maybe there are a few more differences (too many to list). However, from the outside looking in, we've managed to pull off the appearance of a fairly "normal" life. That is, until this last year...

This last year has been a monumental slap of reality that has knocked me out of my comfort zone in a big way. Starting with Jack's unplanned surgery last summer, followed by a year with a lot of respiratory illnesses requiring more doctors' visits than the last 4 years combined and culminating with a major surgery that caused Jack a great deal of pain, requiring too much time in the hospital and a recovery period from hell. Add to that, the fact that we were finally given a name for Jack's disease and he is now officially one of "Jerry's Kids". Yep, there's no denying it any longer ... I am the parent of a medically fragile child who has a neuromuscular disease that is stealing away his health more and more each year. Through this blog, I am also sharing - for the first time with many of you - a glimpse into our not-so-normal life. It's tough to live it, but even tougher to admit.

Anyway, enough about how I'm feeling ... after all, this blog is supposed to be about Jack! Jack is pretty much laying in bed bored out of his mind wondering what the heck hit him. I so desperately want to pick him up and hold him, but it's not a possibility right now. So we stand over his bed and talk to him, read him books and mostly change out the videos he watches all day long. We've not gotten him out of bed because that would require putting him in his body jacket, which is more like a torture device for all involved. The area on his back where "something" is sticking out (a lot) is freaking me out. I'm told it's his ribs, however, the typical anatomy doesn't have ribs sticking out alongside the spine. I considered emailing the orthopedic surgeon to get his thoughts, but I'm sure without actually seeing it, he won't venture a guess. I did email him and ask what the degree of correction was for Jack's curve. He had his nurse call me (query why he didn't just email me back with the answer) and she told me he was 90 degrees before surgery, 53 after -- a 37 degree correction. I have no idea if that is considered a good result or not. Doesn't really matter ... it is what it is.

It is definitely time for me to end this post ... if anyone is even still with me! I'll try and post new pictures soon, but I'm afraid they are all going to look the same ... Jack laying in bed. I could paint his room and rearrange the furniture every week to give you something new to look at!

I'm signing off ... time to try and get some sleep.

A little bit of this and a little bit of that ...

Thank you to everyone who shared kind words about Peggy -- she is definitely an angel here on earth.

For those of you interested in the day-to-day hum drum of our post-spinal fusion drama, here's what's new today:

* The ID doc reduced the volume of vanc by 25% and put it back to the every 12 hours schedule (score!!) It wasn't a big deal and, in fact, he told me that he realized after he hung up the phone with our pediatrician that every 18 hours probably wasn't very practical outside of the hospital environment. I give him a lot of credit for recognizing that there is life outside the hospital.

*For Betty -- Jack's hospital bed is "first-class", fully electric and is a special order "Reverse Trendelenberg". Aren't you impressed? :-) Apria tried to deliver us the piece of crap bed you referred to, but I was given the name of a company on the East coast that supplies hospital beds for kids here in Arizona who are part of the vent dependent program and the woman with that company told our insurance company that Apria wasn't cooperating and that we needed this specific type of bed and she got it for us. Kuddos to good customer service.

*Jack has several new pressure sores on his back on the areas where his ribs now stick out - having been displaced by all the hardware. Not much we can do about it except keep him laying on his sides and out of the body jacket.

*Jack has a swollen elbow -- might be broken because it's swollen above, at and below the elbow. However, since his arm is contracted, it can't be splinted so I doubt they (the infamous "they") could do anything about it. We have it in an ace wrap and are keeping it elevated and iced.

*News flash .... I am soooo tired!

*Pics of Jack hanging out in his room in the "position" he will assume for the next 6 months ... doing nothing but watching his videos. Needless to say, Jack is not sharing too many smiles these days.

Well, that's about it from here. Thanks for continuing to leave us words of encouragement, humor and support. We appreciate them all!

Our Dear Friend Peggy

I've mentioned in many of my daily posts, our friend Peggy. Although Peggy will probably have my head for this, I just have to take this opportunity to share with you all what a wonderful and amazing person she is. Peggy came into our lives about a week after Jack was discharged from the hospital as a baby - trached and vented - back in June, 1999. Peggy walked into our home to a scene she will always remember. Jack's night nurse and I were standing over Jack's crib, which was located in our living room, bagging him through a period of respiratory distress. What I didn't know at the time was that Peggy had made it very clear to the nursing agency she was working for that she didn't take care of kids on vents. Trachs, yes ... vents, no! Not a problem they told her, Jack was only on the vent at night (not exactly true). When she left that day, Peggy told me that although Jack was a really sweet baby, she probably wouldn't be back because she didn't take care of kids on vents. Well, Peggy couldn't stay away. She fell head over heels in love with Jack, and he with her and she never looked back. Peggy has been a significant part of Jack's and our lives ever since that day back in June, 1999.

Peggy has devoted at least the last 8 years of her life to caring for medically fragile children. She does this, not because she has to work, but because she has a special place in her heart for kids like ours. Peggy doesn't just come into your home and provide nursing care for your child, she embraces and cares for the entire family. She is this way with every family she has cared for. She often takes "her" kids into her home for the weekend so that mom and dad can have some respite time. She always included our family in holiday celebrations with her own family because we didn't have extended family in St. Louis. She attended my kids' First Communions, graduations and special events in lieu of my own family, who lived out of state. As difficult as it was for her to say "good-bye" to her Jack over four years ago, she made the trek with us from St. Louis to Phoenix when we moved home. She and her husband, Max, have always graciously opened their home to us when we come back to St. Louis for Jack's doctors' appointments and surgeries. Peggy was at the hospital every single day of Jack's 3 1/2 week hospital stay to allow Mark or me to get away for a few hours (and, of course, to spend time with Jack). We never could have gotten through this last month without our dear friend Peggy. She is the most unselfish and giving person I have ever known. Peggy came into our lives seven years ago as one of Jack's nurses ... today, she is not only one of Jack's (former) nurses, she is Jack's godmother and one of my very best friends. Peggy never tires of hearing about Jack and what is going on in his life. She is one of the few people I can talk to on the phone for hours about nothing else but Jack. She cares as much for him as I do. We are privileged to have a friend like Peggy in our lives. Thank you Peggy, we love you very much.

(my favorite picture of Jack and Peg when Jack was about 2 years old)

Another "brilliant" move . . .

by the decision-makers. Jack's Vancomycin ("vanc") levels are too high based on blood work they drew yesterday. Because of this, the "decision-makers" decide to change the times Jack gets vanc from every 12 hours to every 18. Sounds good in theory, but the reality is that Jack will need infusions of vanc (which take over an hour) in the middle of the night at times. Funny thing is, we NEED to sleep sometime!! Mark and I are both running on empty and now they want us to get up in the middle of the night for several hours to give him his vanc (which he probably doesn't even need, but that's another story). Fact is, they could have just reduced the volume of vanc and solved the problem that way. So, tomorrow I will plead my case to the ID docs in St. Louis (who are the decision-makers) and suggest that they take into account that Mark and I both work full-time, have three other children plus Jack to care for and we don't have night nursing ... so could they please get out their little calculators and figure out a new dosage and keep it at every 12 hours. Wish me luck - I'm not optimistic that they will accommodate my request, but, it can't hurt to ask.

At the request of one of our supporters, I've included a picture of Jack and his sibs from yesterday. Jack is so happy to be back home surrounded by all that is familiar to him. He is still a bit apprehensive, not sure if this is really "it" and he is home to stay. I'm sure it will take him awhile to trust us again.

Time to take apart Jack's bed ... we are getting a hospital bed delivered tomorrow, which will make life much easier on all of us, especially Jack.

Good night to all ...

The Hardware

Before we left the hospital, we got a CD with copies of Jack's x-rays. I was looking through the disk today and the post-surgery pictures are down right scary. You can see why I'm worried -- I can't imagine how his bones can handle the amount of hardware in his back. You can also see that Jack's spine is far from straight, albeit straighter than it was a month ago. Makes me wonder if putting him through the last month of hell was worth it. But, I suppose it makes no sense to wonder at this point since it's a done deal.

Jack had a relaxing day with no time in the body jacket ... yea! He enjoyed his welcome home party and was happy to see all his visitors. Tomorrow we hope to return to our "normal" routine, as much as possible. It's going to be very tough for Jack's nurse to care for Jack by herself -- it's really a two person job. We've got a few ideas of how we can make it work and hopefully things will go smoothly as both Mark and I have little to no time off left from our jobs. The next 6 months will continue to be a challenge and I will continue to update here for anyone who may be interested.

Ciao

Home!!!

We made it! What a tough three days it was, but we did it. Jack cried the entire last hour and a half of the trip, making for a pleasant (NOT) ending to this whole thing. He's just had enough.

A "Welcome Home Jack" party at the Schrooten house tomorrow. Anyone local who wants to come by and see Jack, come by around 4:30 or later. Mark will be cooking burgers on the grill (Mark loves to cook on the grill when it's 115 degrees outside :-)

I'll share more later .... thanks for checking in.

One Day Closer to Home

We arrived safely in Albuquerque tonight. Today was a little tougher on all of us. Mark actually let me drive (which is a 1st) because he is so tired. Jack wasn't very comfortable for most of the trip. Because he has to be in his body jacket and there is no way to take him out of it once he's in the car, we cannot change his diaper the entire day. He was completely soaked -- shirt and all -- by the time we got to our destination tonight. He also got a fat lip when the DVD player -- which sits on his chest -- fell over onto his face when I was trying to reposition him. I spent a good part of the day in tears every time I looked at Jack and he looked back at me with those questioning eyes. I wish we could put Jack in the car without his body jacket, it would make for a much more bearable ride, but I know it would not be prudent to do that. As if the ride wasn't difficult enough, as soon as we get to the hotel, Jack has to get the infusion of vancomycin -- a very nasty medicine that makes him feel even more miserable. Sometimes, this just sucks, you know?

Please pray for Jack's comfort tomorrow as we finish the final leg of this journey. Thank you.

On The Road Again

For any of you considering driving your ventilator dependent, non-mobile, very heavy and very tall child, 3000 miles for spinal fusion surgery, I highly recommend that you .... RECONSIDER! Okay, so not one of you fits into that particular category. If you all could have seen us leaving St. Louis this morning - what a sight. Well, in fact you can see (pictures included :-) We clearly weren't in our right minds when we agreed to do this.

Since Jack must be in his body jacket and cannot sit up, he could not travel in his customary "throne" (the captain's chair behind the driver's seat and with a perfect view of the TV above). Poor Jack had to be in his body jacket, with a harness strapped around him on a mattress on the floor of the van, tied down with the tie downs for his wheelchair. Once in this position, he wasn't going anywhere .... for 9 long hours! The van is so full of crap that I couldn't even recline my seat back. I figured if Jack couldn't move, I'd see how long I could go in one position before I lost it. I only lasted an hour and I was hurting. Jack absolutely humbles me with his tolerance and incredible spirit.

Since Jack has to be so confined, plus we have the added challenges of having to give him Vancomycin over an hour via his broviac, doing wound care and having to watch for additional pressure sores, we decided not to push it to get home asap. So, we are in Oklahoma City tonight, Albuquerque tomorrow night and home by Saturday night. Jack was so happy to get out of the car tonight. What an entrance we made into the Marriott! Once Jack figured out we were not, in fact, home ... the tears started flowing. He so badly wants to get home. But, we post-haste set up his DVD player and put in a movie and he is very content right now.

What a challenge this last month has been, but certainly for no one more so than Jack himself. He is such a trooper. And if he can "keep on keeping on", so can Mark and I. Next update .... Albuquerque. Thanks for checking in.

Pics:
1. Jack watching his movie from a different angle (from the floor).
2. Peggy saying good-bye to her precious Jack :-(
3. Me and Jack right before we hit the road. (not sure why I'm smiling).
4. Jack taking his "position" on the floor of the van.
5. My friend Kristy (another trach board mom) and her little boy Nathan who came by to visit last night.

Yet another "bump" in the road

I swear if we get Jack home in one piece it will be a miracle. Mark called to let me know that Jack has a good size pressure sore on his back, near the incision from the body jacket. He called the orthopedic nurse practioner and emailed her a picture of what it looks like - who then passed it on to the orthopedic resident. Her answer -- bring Jack back to the hospital. Not only NO, but HELL NO! Mark now has to put Jack in the car and get him to the orthotist's office to make further adjustments to the body jacket. No small feat when you consider he cannot sit in his regular wheelchair and must be in a fully reclined position at all times. If he has a pressure sore after only about 5 hours in the body jacket yesterday, what will he have after 28 hours in the car?

When I mentioned to the nurse practioner that we were not at all prepared for what was required post-surgery and that we should never had been told we could get Jack home by car so soon after surgery, her response was that the surgeon wasn't expecting Jack's bones to be as "soft" as they were and that is the reason for the extensive brace and the strict rules regarding moving him. I have to be honest, I'm scared $#%-less that Jack's bones are not going tolerate the hardware ever.

Hopefully, this is just a minor and fixable "bump" on the road to recovery (and home!)

Pictures from Jack's trip home from the hospital yesterday and hanging out at Peg's today.

Bailed!

Just a quick update to let everyone know that Jack received his official release papers today and he is a free man! I'm told he really enjoyed the ambulance ride "home", no doubt because he was actually moving for the first time in weeks. He is very happy hanging out on Peg's couch right now being waited on by two of his favorite people - Kristi and Peggy. I miss him lots and can't wait to see him on Wednesday. I'll post pictures as soon as Mark sends me some (hopefully later tonight).

THANK YOU FOR ALL YOUR LOVE AND SUPPORT THESE LAST FOUR WEEKS.

One more day?

To say "if things go according to plan ... Jack will be discharged tomorrow" is risky business, since nothing has gone according to plan to date. Not to worry though, Jack has been behaving himself and he should be discharged tomorrow. There are still a lot of details that we've not been fully informed about yet regarding meds, equipment and food ... but, Mark assures me he's been asking all the right questions, just not getting any answers. I wish the people who have the "power" would have to "walk the walk" just once. Mark has slightly more patience than I do, so I'm sure he will calmly get it all get worked out tomorrow and Jack will be coming home with everything he needs.

On Saturday, my friend Melisande (one of my trach board mom friends) came by with her son, Donovan to visit. She thought Jack looked great and much more like himself. Thanks, Melisande for stopping by.

As for the rest of us, we had a great time at Disney. I didn't get to spend much time with my girls (and their cousin), as they left Eric and me in the dust as soon as we walked through the entrance gate. Eric and I had a great time though. Since he had no agenda, we just took our time and hung out in Fantasyland (where the lines move the absolute slowest ....) The drive home was a bit painful, as three teenagers and a four-year old tormentor in close quarters makes for a lot of yelling and screaming (by all of us!)

Please keep those fingers and toes crossed and prayers coming for Jack's uneventful release from "prison" tomorrow.


The pictures:
1. Beauties, and the
2. Beast
3. Melisande and Donovan visiting with Jack

We have a smile!

Mark emailed me a few pics of Jack today. We have finally "captured" a bit of a smile. As you can see from the other picture, Gumby goes everywhere with Jack (it's a Mark thing).

Things still look good for a Monday discharge day as long as Jack behaves himself over the weekend. We still have to get up to speed on the broviac, get things lined up with whoever is getting us the pump to administer the Vancomycin and figure out where we are getting the new formula Jack is on. The social worker was able to convince our insurance to transport Jack from the hospital to our friend Peggy's house via ambulance. That makes life much easier in the short term. Jack's nurse will be flying out to St. Louis again this weekend and will help with Jack the few days he is at Peg's house before we hit the road for home. Since Mark is already out there, he'll just stay and I'll be flying back out on Wednesday. I want to stay home as long as possible because both my girls are in school and it's a lot for my sister to have to get my kids to school and her kids to school. Eric is also having a difficult time with all the disruption. I'm just looking forward to the day we are ALL back home again. It's been one L--O--N--G month.

Someone suggested that I take advantage of this time to do something fun with my other kids. I couldn't think of anything fun to do here in Phoenix, so I decided I'd take the kids to Disneyland this weekend! They are beyond excited because it was so unexpected. We'll leave tomorrow after school gets out. I won't be taking my computer with me (hard to believe, I know), so the next update won't be until Sunday night. I hope you all have a wonderful weekend.

Thanks Ellen for the books and thanks Pat and Chuck for the chocolate. We are blessed to have such wonderful friends.

One Step Forward

Jack's drain came out today ... so, the chylothorax is (hopefully) resolved. Jack continues to do well. Unfortunately, I can't say the same for Mark. He doesn't tolerate the lack of sleep as well as I do and he was sick this morning with a migraine and puking. He was upset because around midnight, after he and Jack had finally fallen asleep, several respiratory therapists came into the room to orient one of them on Jack's home vent. They made no attempt to be quiet and were talking as if no one was sleeping in the room. Mark couldn't fall back to sleep after that.

The orthopedic resident indicated that Friday could be discharge day. That said (and now that I'm home and in no hurry to go back to St. Louis) ... we've asked for a Monday discharge day. It's makes no sense to discharge Jack heading into a weekend where we can't get in touch with the people we need to if there are problems. We've also decided not to get on the road right away, but to give Jack a few days out of the hospital and stay in town to see how things go. If he is discharged on Monday, the plan will be to head home on Thursday. I'm probably going to fly back out next Wednesday. I haven't decided yet if I should be at the hospital on discharge day. As much as I hated leaving Jack, it's almost as difficult for me to leave my other kids and the "normalcy" of being home. I need a fairy godmother to wave a wand and get Jack back home effortlessly. It's nice to fantasize anyway.

Have a great day and thanks for your continued thoughts and prayers.

Hurry up and wait

No real news to report today. Jack hasn't had an incident of respiratory distress for 24 hours, the drain is still in and the chest CT is off. Apparently, with all the hardware in Jack, they don't feel like a CT scan will yield any useful information (whoever they are). So we sit and wait ... for what I don't know. Thanks for waiting it out with us.

Grrrrr

We may not be going backwards, but we aren't moving forward very darn fast either. It's two steps forward and one step back ... or is it one step forward and two steps back? Mark has only been there three days and he is already getting irritated with the way things are progressing. Glad to know it's not just me. Jack does well for the majority of the day, but he continues to have periods of respiratory distress that just knock him down for hours. Mark is getting mixed messages. One group of docs tells him that today's x-ray is unchanged and another group tells him that it is worse. It's very frustrating because there are too many "teams" involved and they all defer to the other and the end result is not a damn thing is getting done. The CT surgeon told Mark that the x-ray looked worse and that he thinks they should get a CAT scan of the chest within the next few days. Why do we have to wait a few days? Problem is, Jack is a "victim" of politics. Technically, Jack is "owned" by orthopedics, but from their perspective he is doing fine (incision looks great -- that's all they look at). Even though Jack's issues are not orthopedic, all the other specialties have to get ortho's "OK" to make decisions regarding Jack. It is total B.S. I wish ortho would sign off and let another team take over at this point. (we need Dr. Schuler ... she is the one person who could always make things happen :-(

I thought putting 1500 miles between me, Jack and the team of docs would keep me calmer .... it has not. Jack is not in the hospital because he necessarily needs to be there, it's because no one will take charge, figure out what the problem is and come up with a plan. Mark is going to strongly suggest that the chest CT be done tomorrow and someone needs to tell us why Jack is still draining chyle, why he is having periods of respiratory distress and what they are going to do to get him better and out of the hospital. He's also going to suggest they have a pow-wow and get on the same page. It is unlikely that I will be going back to St. Louis on Thursday because there is no need for both of us to be sitting at the hospital.

In case anyone is wondering ... no, I don't wish we'd had the surgery done in Phoenix. I don't question the fact that the surgery was performed by one of the best and that the results were fabulous. Problem is being on the "floor" and the politics I mentioned. In the past, Jack was discharged from the PICU - an entirely different experience. I knew when we were headed to the floor that there would be frustrations and problems.

Mommy is so sorry Jack .....

Home Sweet Home

It sure is nice to be home ... if only temporarily. It's very strange to be here without Jack. I'll be doing something and I think to myself ... I need to go check on Jack. It's eerily quiet without the sound of the vent going 24/7.

I talked with Mark multiple times today and Jack had an uneventful day. That is good. Our dear friend Peggy came by to relieve Mark and when I spoke with her, she confirmed that Jack was having a good day. He's having a tough time with all the antibiotics -- he turns red as a beet when he gets them and I'm sure they make him uncomfortable. Peg also had to let me know that everyone just "loves" Mark. For those of you who don't know Mark -- he is the polar opposite of me, so I imagine they are all enjoying his calm demeanor. Mark is also quite funny and I hear he has them all laughing. I'm not sure they will let me back in Jack's room when I return.

Today was a relaxing day just hanging out with my other three kids. My sister, Maureen, is in town from New Jersey. I'm glad I was able to see her before she left. We had dinner at my other sister's house and several friends from our church/school came over as well. Of course, I feel guilty enjoying myself while Mark and Jack are in "prison". I'm not sure when Jack is going to be able to bail from the hospital. He still has his drain in and that has to come out before he can leave. Plus, we have to learn how to care for the broviac - something I have no desire to learn, but I guess I have to. Yuk! If Jack behaves himself, it's possible he could get out of there by Friday.

I don't have a picture of Jack to share today, so here are some taken at my sister's house this evening. The pictures from the top down are (1) Mary (on the right) and her cousin Shannon; (2) Eric in the pool; (3) me getting "report" from Mark; (4) me and my sisters, Joan and Maureen.

Thanks for your continued prayers and words of support. Jack and I are very lucky to have such wonderful friends and family looking out for us.

Another "bug" - another antibiotic

I'm home .... and terribly sad being away from Jack. *Sigh*

The ID doctor came by Jack's room this morning to let me know that the stuff they are draining from the pleural effusion is now growing yeast. Ugh! Jack is now on yet another broad spectrum antibiotic to cover the yeast until they can identify the specific yeast he is growing. It's another heavy duty one where they have to monitor his kidney function and some other things (my brain isn't able to take in much more information these days, so I don't recall all of the possible side effects). He is now on three different antibiotics. I'm now convinced that Jack was much better off with a crooked spine than he is now, or may ever be. I do not have a good feeling about where we are headed at all. Mark has already called a couple of times asking me if he should be concerned about how Jack is acting/looking. I hate those kind of phone calls. Per Mark's last phone call, Jack is back on oxygen and still only satting in the low 90s and he is very uncomfortable. I feel helpless.

Your prayers are appreciated.

Status quo

I think Jack's goal before he gets out of here is to get every specialty involved in his care. Today he was seen by cardiothoracic, pulmonary, infectious disease, and otolaryngology. Interestingly, no sign of the orthopedic team, yet they supposedly "own" him. Because of the amount of blood we were suctioning and his history from last summer, the ENT did a bedside scope, with pulmonary looking on. He did not see any area of concern in the trachea - so, at this point they want us to be careful suctioning. They always want to blame it on suctioning (aka, the parent), which I know is not the issue because there is nothing different about how I have been suctioning the last two weeks, versus the last seven years and we've not had this problem before. It's all a guessing game and very frustrating.

The ID docs are taking the position that the infection must be in the hardware -- since they can't find it anywhere else. So, Jack will be on IV antibiotics for 6 weeks and oral antibiotics for a year. Gee, think we'll have any yeast related problems with that?

I fly home tomorrow and will fly back here on Thursday, unless I need to get back here sooner. Mark is a little nervous about having to relay information to me because he knows I'll be grilling him regularly and he is not good with the details. Should be a challenge for both of us. :-)

I want to thank all of you for taking the time to check on Jack, for leaving your words of support, for your prayers and for all the gifts, cards and food that have been sent. Jack's room is full of balloons and teddy bears and I have been well supplied with chocolate and diet coke! I can definitely feel the love and support of all of you and, without question, you have carried us through the last 2 weeks. Thank you!!

I'll continue to update, but after today ... my information will be coming from Mark. God willing, there won't be much to report!

Today's "Damage"

Oh what a day today has been. Things just aren't getting any better for Jack. First, I was able to get CT to put in the broviac. Yeah! I don't think I mentioned in yesterday's update that the ID people noticed some fluid in the area around Jack's left lung, so they asked the CT surgeon if he would drain it so they could culture it. The pulmonary docs said on x-ray it looked like there might be a small amount of fluid, but not enough to justify tapping it, but since he was going to the OR, it made sense to go ahead and do it. Well, in true Jack fashion, the x-ray was very deceiving and there was a lot of stuff that was drained and is still being drained and it is not at all what they were expecting. Although I am somewhat medically literate, I will tell you that what they threw at me today was a bit over my head. I asked Jack's godfather, who is a pediatrician and who is keeping in the loop because he has privileges here at Children's, to write it out for me so that I could accurately explain what is going on. What they are draining out of the space surrounding Jack's left lung (the area between the chest wall and the pleura) is stuff called "chyle" which flows through the lymphatic system. He has what is called a "chylothorax". They aren't sure where the "leak" is or how it happened -- possibly during the spinal surgery, but the CT surgeon can't exactly figure out how to relate what they did during the spinal surgery to the chylothorax. I'm not sure I really understand entirely what is going on, but, the end result is that Jack has a drain coming out of his left chest and they are draining off the "chyle" every 4 hours as of now. Initially, they were getting quite a bit out, but it has tapered off through the evening. So, in addition to the broviac, which they placed on his right upper chest (your left looking at the above picture), he also has the tube coming out the left side of his chest (which you can't see in the picture). To top everything off, we have been suctioniong a lot of blood (clots) from Jack's trach today. For reasons I don't understand, the blood from the trach has no one concerned.

Jack is really hurting today and is having a difficult time breathing. He is back on oxygen and his vent settings have been increased. There is a real possibility that he may end up back in the PICU. He is doing okay as of this very moment (it's 11pm), but this evening was very rough.

What does this all mean? Well, the chyle is not an infection. So, the question remains, is there still a source of infection out there somewhere, or is the chylothorax the source of the fever. They are treating Jack with IV antibiotics in any event and I guess we just sit and wait to see how things fall out. Guess what .... we aren't getting out of here any time soon. Depending on how tomorrow goes, I will most likely fly home on Saturday and fly back out here Wednesday or Thursday. I need to see my other kids, get into the office and, more than anything else ... get out of here for awhile. I'm not a nice person anymore. Mark has plenty of vacation/sick time to spare and he will stay with Jack next week. It will be very difficult for me to not be here, but I don't anticipate any major decisions having to be made while I'm gone and I'll be in touch by phone (every hour on the hour). I think the docs will be glad to be rid of me.

As you can see from the picture, not only is Jack not sharing any smiles, he is downright sad. I feel so incredibly guilty for putting him through so much pain the last 14 days and I'm not convinced it is/will be worth it. I guess time will tell.

Ciao.

Just shoot me now

Okay ... get a sense of how I'm feeling today? (I clearly have too much time on my hands, eh?)

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Update: Apparently the decision has been made by ortho that Jack is getting a broviac because they have already called the general surgery team and an OR time has been scheduled. Gee, nice of them to get my "OK" on this. And, the general surgeons want pre-op blood work. WHAT???? I have no doubt that the peds team docs -- who are only the "messengers" for the most part -- are drawing straws to see who has to come to Jack's room and deliver the latest news. I found out that a CT surgeon (cardiothoracic for you non-medical people :-) can also do a broviac - and the same CT surgeon who operated on Jack last summer is available and willing to place the broviac (they tell me he "loves" to put in broviacs). I told the pediatric resident that I want CT to put in the broviac, not the general surgeons. I was told that ortho called the general surgeons, to which I said ... it's my decision and I want the CT surgeons. Ortho is gone for the day and they will "talk" with me in the morning. I am beyond rational right now, but I am adamant that CT put in the broviac -- they know Jack and I like them better! Tomorrow morning should be interesting.
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Here's where we are today. Jack's first culture has been determined to be contaminated, his culture from yesterday is negative and his "bands" (indicating a bacterial infection) are down from 21% to 1%. All good things, you say. But, Jack is still running that nasty little fever. The ID team came up with a plan -- do additional cultures and if they are all negative, take Jack off the antibiotic and see how he does. Sounded like something I could (almost) live with. However, the orthopedic team (who has been incognito for days and didn't have much to say about the fever that they've known about from the get go) come up today -- en masse and making quite the entrance -- and decide that we have to be "aggressive" with this and proceed to tell me that Jack needs to get a broviac and start IV antibiotics asap. They've damn near got the OR team scrubbed and ready to go. It's really difficult to make a decision when you can't even get everyone on the same page and, especially when the people telling you to put in a broviac are surgeons and surgery to them is ... well ... no big deal! I've asked to talk with the ID team tonight before they leave and get their opinion. I seriously am losing my mind now (and deep breathing is not helping). I know we really have no choice but to agree to the broviac because the orthopedic surgeon flat out said if we aren't aggressive, "he might not survive". Surgeons ... always known for their compassion and tact.

I have NO idea what to do at this point. Someone out there want to make the decision for me? Please. If we don't get out of here by the weekend, I may very well spend a fortune and fly home for the weekend. Mark is flying out tomorrow night, as we were supposed to be on the road for home by Friday. Mark can stay with Jack over the weekend. (Fitzgibbons gang -- I'll call and let you know what is going on as far as whether I'll be at work on Monday).

That's the latest and the greatest for now.

Good News, Bad News

The ID (infectious disease) doctors came by this afternoon. The good news is that they believe the first culture (from 2 days ago) is a contaminate and the culture from the blood draw last night is not growing anything yet. The bad news, based on his CBC and some "banding" they are seeing, they believe he does have a bacterial infection somewhere. As of now, they don't think it's the "bad" staph infection (no one has said "MRSA" -- but, I know that is what they are worried about). More bad news - they want to do another arterial stick for another culture and we are here until at least Thursday now. God grant me patience. Jack also has a rash from the "big guns" antibiotic they are giving him. They are going to continue giving it to him since the rash is mild and, in his case, if he has a severe reaction, we don't have to worry because he has a secure airway - the "bonus" of having a trach and already being on life support. :-) Overall, Jack is doing well. His incision looks great and he doesn't act like he is in much pain anymore (unless they are sticking him with a needle). He is still running low grade fever (around 100) and he is sleeping a lot. I think he is just really bored with this place too.

Here's to at least 2 more nights in "paradise" . . . have a great evening.

A little humor

This pretty much sums up how Jack and I are both feeling today! I'll update as soon as I know something.

Losing Perspective

The infectious disease docs wanted another culture so they know where to go from here. More cultures mean more blood. Since Jack has absolutely no more venous access, they had to do an arterial stick. An arterial stick can be summed up in one word -- PAINFUL. It is so difficult to watch your child, who cannot move to escape, who cannot speak to voice his opinion and who is at the absolute mercy of everyone he encounters, be put through so much pain in the last 10 days. I'm losing my perspective. I just want to get him out of here at all costs. I can't give the OK anymore when they tell me they need to stick him, yet again. I don't even want to hear what they have to say. I am no longer strong enough to help him get through this, I just want to protect him from it. I'm losing sight of what the benefit of this surgery was supposed to be. I know intellectually, if Jack does in fact have a bad "bug" in his blood, it must be addressed, however, emotionally, I want to say "forget it" ... just let us go home. Fortunately, I'm surrounded by rational people who are keeping me in check. We will know something tomorrow as far as where we are headed. Let's just hope and pray it's home.

Visitors

Jack had a couple of visitors today. Shannon and Jack came by to say "Hi", as did "Millie" the dog. Jack wasn't too impressed with Millie, but he was happy to see his buddy Jack.

We'll know tomorrow what the course of treatment is. The infectious disease docs said that they will check the cultures tomorrow to confirm what is growing. It could be a form of staph that is bad news or it could be what they call a contaminate - a staph that all of us carry on our bodies. If it is the former, life will get complicated. Please pray it's only a contaminate.

Thank you for all your thoughts and prayers.

Ugh!

Jack is still running a fever. The culture was gram positive -- which means it's most likely a staph infection. They tried -- yet again -- to get more blood from him today. It's beyond ridiculous how many times he has been stuck. They are giving him an oral antibiotic that is "very controlled" ... in other words ... "very expensive". It must be approved by the infectious disease docs before they can give it. That said, they don't feel like it will kill whatever is causing his infection, only keep it at bay. So, the infectious disease people are being called in to (1) see if they can identify the source of the infection; and (2) figure out how to get rid of it. If it's in the bone or his newly installed hardware, that is not good.

I'm getting a little panicky to say the least. I just want to get out of here!! My worst fears are coming true. Guaranteed we won't get out of here tomorrow. But, they all know exactly how I feel about being here (does that surprise you?) and they are going to do everything they can to get us out of here by Thursday. Of course, a lot will depend on what they finally determine is the source of the infection. We also have to be careful that if he stays in here too long, he'll catch some other hospital born infection.

Hanging on by a thread .....................

Fever

Update - the anesthesia resident came by and made a half-a$$ed attempt at getting a line in Jack. The first thing he said when he came into the room was "I've had a long day". Good grief, I don't really care how long his day has been. I told him that Jack's had a long day too! The other thing that bugged the heck out of me is that he didn't even wash his hands when he came into the room. Thankfully, he only stuck Jack twice and then gave up. Jack got 3 ... count them ... 3 Rocephin shots at the same time. It was awful. I can't take any more of him being stuck with needles. My mission ... get out of here and fast!

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Jack had another rough day. I woke up to him crying (more like moaning) this morning. His heart rate was sky high and he was hot. He's run a temp of 102-104 throughout the day. They had to get blood for a CBC and cultures, so they called the transport team - who was able to get some blood out of him after 3 sticks. They eventually called the ortho resident who checked his incision and it looks fine. They were thinking the source of the infection was the central line. I was looking at it and noticed it was leaking -- so it came out. Only problem is, he is not tolerating full feeds yet and they are worried with him not having a line in for fluids and antibiotics. They called the transport team to see if they'd come down and try and get a line in --- they said "thanks, but no thanks" -- actually, they said they didn't think they could get one in based on the difficulty they had getting blood. Plan B is to call someone from anesthesia to see if they can get a line in. I'm not optimistic because it's a Sunday evening and we will not get an attending, we'll get a resident and I'm not convinced he/she will have any more experience than anyone else who has tried. Worse case scenario - they take him to the OR tomorrow and do a cut down. If anesthesia can't get a line in tonight, they will give him a shot of antibiotics for tonight.

Let's hope that getting the central line out will resolve the fever, that the cultures don't grow anything and that he starts tolerating his food. I'm still planning on getting out of here by Tuesday. And you all know how well I handle things that don't go as I plan!!

Happy Birthday Daddy

Love,

JACK

Have fun at the birthday party today .... mommy and I wish we could be there. Tell everyone we said "Hi"

Lazy Saturday

Today has been very low key. Jack is back to his old self in that he won't nap. He's been awake all day watching movies on his DVD player. I, on the other hand, am struggling to keep my eyes open. Our friends David and his daughter, Myra, came by for a visit and made Jack's day.

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Mary -- good luck at the feis tomorrow. Remember, high kicks and pointed toes. Love, Mom

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Are we having fun yet?

I seriously thought I might be able to get some work done while I was "hanging out" at the hospital this last week. However, there is not a lot of hanging out going on. It takes two people to do anything with Jack - one to log roll him (the ONLY way we are allowed to move him) and the other person to do whatever needs to be done (diaper change, put on body jacket, change sheets, etc). I spend the majority of the day at his bedside assisting with his care --which I absolutely want to do, but forget getting anything else done. Jack is still not digesting his food, so they did an abdominal x-ray to make sure there were no problems with his intestines or bowels. Everything looked fine, so the plan is to get more aggressive with getting food in him and helping him move it along. It's now unlikely we'll get out of here on Monday as he has to be back to his full feeds before we can leave and he's not even close to that.

Jack is off of his IV morphine and is now on oral (g-tube) oxycodone. He had a good day pain-wise and tolerated everything well. He stayed awake for much of the day and even watched two movies without falling asleep. I almost got a smile out of him when we were singing along to Raffi's "Spider on the Floor". We are very close! Although, rumor has it that he shared a smile with Peggy and our friends, David and Amy when they were visiting the other night. He must still be mad at me for putting him through this :-(

Thanks to Kristy for stopping by to visit with us and especially for getting me my caffeine fix for the day. Thanks also to everyone who has sent balloons, stuffed animals, and cards -- your thoughtfullness is very much appreciated.

It's late and I'm tired. I'm sorry this is such a boring update. Maybe something exciting will happen over the weekend that I can report on, but I wouldn't count on it.

Jack is holding on to Gumby for dear life in the picture.

One week down.

It's hard to believe that tomorrow will be one week since surgery. I knew this was a big surgery, but I never anticipated how difficult and slow the recovery was going to be for Jack. He has done remarkably well given all his underlying issues.

I have to admit that I was not at the hospital for a good part of the day today. My dear friend Peggy came by about 11am to stay with Jack. I went to lunch with a friend then to Peg's house to relax for awhile. I made it back to the hospital around 5pm. I missed much of Jack's day and he is now sleeping. I did find out that, for the next six months, he will have to wear his body jacket whenever he is out of bed. Because the jacket supports his right hip and goes down to his mid thigh - he will have to be in a reclined position the entire time. We have to get a different wheelchair before we leave. I'm a bit overwhelmed thinking about the next 6 months and Jack not being able to sit up at all for that long. I have no idea how we are supposed to transport him to doctors' appointments. I feel like we were not at all well informed of what to expect following this surgery. I could write a commentary about what transpired between the orthopedic surgeon and Peggy today when he came by to "discuss" some questions I had for him, but, I'd rather not focus on the negative today, it consumes too much energy. Let's just say I might need a particular someone to come to St. Louis and kick some butt! :-)

I've asked to stay here until Monday - which they said shouldn't be a problem. Jack's nurse, Kristi, flys in Monday from Phoenix to help us out next week before we head for home on Friday. I never thought I'd ask to stay in the hospital, but Jack's care is very involved and requires at least two people to manage him. He also really needs the support he gets from the respiratory therapists and the physical therapists for as long as possible -- all of whom have been wonderful.

Thanks for checking in.

I can't come up with a title for today's post. I'm losing my sense of creativity along with a whole lot of sleep. Jack just couldn't seem to get comfortable today. His heart rate was higher than usual and he was running a slight fever. Of course, the minute he runs a fever they want to culture everything. His central line is no longer "giving" blood, it's only taking in fluids (TPN). I told them there was no way anyone was even attempting to get blood out of Jack at this point. His veins are shot and the well is dry (so to speak). They gave him some Tylenol and turned down the temperature of his room. So far, he is keeping his temp down. He's finally resting comfortably for the first time today and respiratory is here to do their thing. Such is life in the hospital. I hate this ...

Ciao.

Pictures

I'll post an update later this evening, but here are some pictures of Jack today. He's watching his favorite movie - Shrek, yet .... still no smiles.

Tough As Nails

Jack tolerated a lot today, all the while wincing, grimacing and breathing through his pain ... yet, not a single tear shed (on his part). He is absolutely one of the toughest individuals I know. There are very few places on his body that aren't bruised, due in large part to the pursuit of a reliable vein during surgery. The orthopedic resident said it took longer to get a central line in Jack than it did to put 34 screws in his spine - something she had never encountered before. Jack ... he never takes the easy road.

Today they got him out of bed and sat him up in a special chair. He also got his drains and foley out and his dressing removed. It is one very long incision. He was also awake for a good part of the day and even watched (listened to) a few videos. I wish I could tell you he will have a restful night, but no sooner does he close his eyes and someone is in the room doing something to him. As much as I dislike being in the hospital, I am in no rush to get him home either.

Time for me to head back to Jack's room. Our friend Peggy (who we are staying with) came and relieved me so I could go to her house, shower and get a change of clothes. When I got back to the hospital, she was getting ready to give Jack a bath and wash his hair. She told me to leave because I make her nervous with my hovering :-) Yes, I hover. I gladly took the opportunity to go to the cafeteria and juice up on caffeine.

I'll try and post a picture tomorrow.

As always, thanks for checking in, for your jokes, and for your thoughts and prayers.