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.
***********************************************

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.