Hope is the thing that is willing to take a chance on the future. Hope is the capacity to see something on the horizon that we are willing to move toward. If our hope gets us from today to tomorrow, and in that new day we are ready or able to deal with something we thought we couldn’t face, then hope has done its job. There is a worse thing than false hope. It is no hope.
(Circa 2008)
We are half way home after an eventful week in St. Louis. This year's trip didn't go as smoothly as the last one, but all in all, not a bad visit. To recap:
Cardiology: Echo and EKG showed no problems. Due to Jack's low heart rate when sleeping (low 40s), they did a 24 hour holter monitor. Of course, because it was a stressful week for Jack, his heart rate didn't dip in the 40s like it typically does. I don't expect the holter monitor to reveal any "bad" news. I was told, if everything looks good, I won't be hearing from them.
ENT: Ears were cleaned out and bronch showed a good airway. No granulation tissue or erosion issues. We are changing Jack's trach to a Bivona flexTend with a different flange and switching from TTS to an air cuff (this will make no sense to my non-trachy friends). I'm not sure if we are upsizing or not. The trach nurse was going to talk with the ENT regarding the results of the bronch and then decide whether Jack needs a bigger trach. I'm thinking he doesn't.
Neurology: We really don't get any "news" at these visits. Jack's issues are obvious. Contractures are Jack's enemy right now. We can do range of motion and stretching, but there really is no way to prevent contractures from happening. The biggest concern I have is the jaw contractures because it will be an issue should Jack need any work done on his teeth. Essentially, Jack won't be able to have any work done on his teeth because you can't open his mouth wide enough to get in there. After our "medical" visit with Jack's neurologist, we went to lunch with her and got to have a social visit. Jack's neurologist is a great doctor and a good friend.
Orthopaedic: See prior post. Not sure what to do regarding the broken screw. I'm going to make an appointment with Jack's local ortho and get his opinion. I suspect he'll say the same thing as the St. Louis ortho - if it's not hurting Jack, there is nothing to worry about. It's hard not to worry about what I see in that x-ray! As for how or when the screw broke - I really don't know. Jack had an x-ray taken back in March by his local ortho and the screw wasn't broken then. So, it happened sometime within the last seven months.
Ophthalmology: This appointment is the one causing us trouble. Because Jack had congenital cataracts, he is at risk for glaucoma. After doing the EUA, Jack's ophthalmologist told us that the pressures in Jack's eyes have been consistently rising the last six years. He said he always draws a picture of what he sees when he does an EUA and, while the pressures aren't dangerously high, the changes he's seen in his pictures over time has him concerned. The risk with high pressures is blindness. Jack doesn't need to add blindness to his list of ailments. So, the ophthalmologist wants to see Jack back in 9-12 months. Ugh! He gave us drops we have to put in Jack's eyes everyday and then he'll do another EUA when we come back. The treatment for the high pressures is another eye surgery. Because Jack's ophthalmologist has been following Jack since he was 13 months old and because he has been doing the EUAs and documenting the changes in Jack's eyes, I really don't feel like this is something that can be handled locally. And, at the end of the day, as much as I hate the drive to St. Louis, I have confidence in the doctors in St. Louis and I don't have the same confidence in the doctors in Phoenix. I wish I did because it would make life so much easier, but I just don't.
Eric saw the ophthalmologist too and he got good news - his eyes are improving and his new prescription isn't as strong. Yeah!
Vent Issue: Apria gave me a hard time because I didn't let them know two weeks in advance that I was traveling. They claim that if they knew I was traveling to St. Louis, they would have had a plan in place ahead of time in the event of equipment failure. I highly doubt it. I told the Apria rep that there was no way they were going to place blame on me because they had to scramble to get me a replacement vent. I couldn't believe the hassle it was to get a replacement vent. Apria is a national company and they should have more than one backup vent in the entire state. Seriously people, buy more vents! They made us drive to Illinois to pick-up the vent - which was b.s. They should have delivered the vent to us - we are the customer.
Visiting with Friends: As always, we had a great time visiting with our St. Louis friends. We stayed with friends we knew from Phoenix. We lived in the same apartment complex when we were both young and childless. They moved to St. Louis before we did and have always been there for us over the years. We also had fun visiting with Jason, Jenny and their boys, Ben and Alex. Eric especially enjoyed playing with boys who like Lego as much as he does. Eric also spent the night with one of Jack's former nurses who has a little boy the same age, who likewise loves Legos. I think Eric had a good time in St. Louis.
My Mom: While we were in St. Louis, we learned that my mom's brain tumor is back and she is deteriorating really fast. She is now in a hospice facility and doesn't have too many days left with us. She's had a difficult and painful road following her initial diagnosis of a GBM in July 2007 and her body is tired. Your prayers and good thoughts for my mom and my family are appreciated.
That's the recap and update from here. Tomorrow will be another long day, but at least at the end of it, we will be home sweet home!
I think I discovered the source of Jack's distress the last few days. I was wracking my brain trying to figure out why Jack was completely "checked out" (in a way I had never seen him before) when he was in his wheelchair, but once he got home and out of his chair, he was fine. It occurred to me that Jack is on a different ventilator when he is out and about in his wheelchair. So today, I changed out the circuits on the home vent (the one hooked to the humidifier) and used it as his travel vent and he had a much better day today. Clearly, there is a problem with our travel vent. I called Apria and told them they needed to get the vent changed out here in St. Louis before we get back on the road. There was some grumbling about the fact that because I have one working vent, why do I need the other vent exchanged right now. I reminded them that I PAY for TWO VENTS and they will damn sure provide me with two working vents at all times. I didn't make them bring out a new vent tonight, but it had better get here in the morning!
Jack saw his orthopaedist today and we learned that one of the largest screws inserted into his bones when he had spinal fusion surgery has broken off. It's one of the anchor screws that goes into his left pelvis. The ortho says that it shouldn't be a problem and shouldn't cause Jack any pain. I'm not entirely convinced. Here is the x-ray - it makes me sick to my stomach just to look at it :(
Sorry I haven't been very good about updating our St. Louis visit. It's been a rough week so far - at least for Jack. I'm not sure what it going on, but he's been very sleepy, uncomfortable and crying on and off most of the week. I feel like something is wrong, but I don't have a clue what it is. He is most miserable when he is in his wheelchair - where he has been spending a majority of his time lately. It's very hard to see him hurting and not know why. I'm not looking forward to tomorrow because it's going to be another long day and I can't take another day like today.
Jack saw his neurologist today and she forced convinced me to get the flu shot for Jack. I am totally against flu shots - I don't get them for any of my kids. But, Jack's neurologist can be very convincing and, the fact that he could get it right then - during her clinic - I decided to go ahead and let them do it. She tried to convince me to get one too, but I declined :)
I haven't gotten any pictures of Jack this week because he has been miserable. But I did snap these pictures of just two of the many things I love about St. Louis Children's Hospital.
We arrived safe and sound in St. Louis.
I forgot how tough this drive is. Eric did great except for about the last two hours of day two. He had had enough and was just wanting to get out of the car. He so desperately wants to fly home.
The getting Jack in and out of the car is getting tougher with each passing year. He, obviously, can't ride in his wheelchair for the whole trip, so we put one of the captain's chairs back in the van and lifting Jack in and out of that chair is hard on one's back, to say the least. Jack did well for the most part, but the transitions from car to hotel room and back to car were hard on him. He was wiped out tonight and feel asleep before 10pm, which is very unusual for him.
While I really love all our St. Louis docs and I know that the trip is totally worth all the work, it makes me mad when I think of the lengths we have to go through to get Jack the quality care he deserves.
Anyway, after a good night's sleep, I'm sure I'll have more energy and be ready to tackle all the appointments and procedures scheduled this week and I am looking forward to spending time with friends.
Just a few pics from our time on the road:
Mary had her senior portraits taken today by an awesome photographer - Doni.
I snapped a picture with my phone while Doni was taking pictures. We can't wait to see Doni's pictures.
5:00am: alarm goes off, get out of bed off the couch.
5:15am: Mark walks in the door after working all night.
5:20am: set up baby monitor in Mary's room; wake up Mary and tell her that she is on "Jack duty" and to listen for any alarms.
5:25am: Mark goes to bed in Jack's bed (so he is as close as possible to any alarms that may go off).
5:30am: leave house and go pick up sister #1.
6:00am: drive with sister #1 to meet sister #2 at our walking trail for 1/2 marathon training.
6:30am: arrive at destination and start walking with sister #1 and sister #2.
6:30am - 8:30am: walk 8.5 miles and pray the whole time that if any of Jack's alarms go off, Mark or Mary will hear them.
9:00am: Call Mary on her cell phone as I'm driving home and tell her to get Eric up, dressed and fed breakfast.
9:25am: arrive home; wash face; change clothes; wake up Mary and tell her that she is still on Jack duty.
9:35am: check on Jack, he's still asleep (Mark now asleep in his bed); head out the door with Eric to take him to a Sibshop.
10:05am: drop Eric off at Sibshop.
10:45am: arrive back home; breathe a sigh of relief that Jack is still asleep and didn't need anything the last 5+ hours that I've been gone; wake Jack up and start his morning routine.
1:15pm: leave house to pick up Eric; tell Mary she is on Jack duty again.
2:30pm: arrive home; Mark is awake; Jack is fine and all is well.
3:30pm: head to the Mall with Mary to look for something to wear to fundrasier/concert event tonight (because, you know ... I don't have a thing to wear in my closet!)
4:30pm: arrive home with new outfit; get ready for evening event
5:00pm: nurse arrives
5:30pm: leave house with Mary for a fundraiser/concert with my sisters and their families (Mark and Eric elected to stay home).
10:00pm: arrive home, nurse leaves; Jack is happy and I'm thankful that today went off without a hitch!
__________________________
On days like today when Mark has worked the night before, I have things I need to get done and I don't have a nurse during the day, it's all about logistics and having every piece fall into place perfectly. Today everything went according to plan and I got it all done. Yeah! Most any other Saturday and I would have been stuck because Mary typically works on Saturdays. Fortunately, she took this weekend off because her cousins are in town and she wanted to spend time with them. It also helps that Jack is a night owl and not an early riser.
11:47pm: Time for this tired Mom to get to bed and get some rest so I can wake up and do it all over again tomorrow.
Life is good.
Labor Day has come and gone and it's now time for some cooler, "Fall" weather, yes? I'm usually not one to complain about the heat because I know it's the price we pay here in the desert for our fabulous Winters. However, this summer is different because I'm training to walk a half marathon.
When I decided to walk the half marathon to raise money for Cure CMD, I thought it would be no big deal. After all, I'm not running a half marathon, I'm only walking it. I mean, how hard can it be to WALK 13.1 miles? Well, when it's 110 degrees and humid outside (what happened to our dry heat anyway?) . . . it is tough. I've tried early morning and late evening and regardless of the time of day, it is still hot and miserable. I'm ready for cooler weather now.
I'm optimistic that I can finish the walk before the sweepers provided the weather in Los Angeles in October is much cooler than it is in Phoenix in August.
Thank you to all my friends who have made a donation to date. I really appreciate it ... and you.
In other news ...
Hilary made it back to Rochester safe and sound and is happily tucked away in her dorm room. After Mark took her shopping for stuff she needed to get her through the next few months, she promptly told him it was okay for him to leave now. There becomes a point in time when all parents are good for is their money!
Last week, I had to take Jack to an "intake" appointment so that he could remain eligible for Medicaid. Because of our state's budget crisis, they moved some kids who receive Medicaid to a different program called Children's Rehabilitative Services or "CRS". I almost opted out of the whole thing because I think it's BS that we have to see doctors who will not be providing care to Jack (because we have private insurance). But, I figured it was not wise to lose Medicaid either. We get to the appointment and they tell me we are seeing a geneticist and the appointment will take at least one hour. I (somewhat) calmly told them that Jack is seen by one of the top neuromuscular docs in the country at one of the top neuromuscular centers in the country and that I know more about Jack's genetic condition than their geneticist ever will. I handed them the three-page history/diagnoses/conditions/medications/list of physicians that I had typed up and told them everything they needed to know could be found on those sheets of paper. When the geneticist came to the room, I explained why I was there (only because I had to be) and I told her that I didn't have an hour because I had to get to work. She wrote fast and we were out of there in a half hour. She mentioned some other genetic testing that would tell us if Jack has any other genetic glitches other than CMD. Seriously, do you think I care? What difference would it make if he does? I let her know that Jack is an impossible stick and she wasn't even going to be allowed to try.
The doctor told me she was "very impressed" with how good Jack looks given all his "issues". She also felt the need to tell me that most marriages don't survive having kids like Jack. Weird.
I really don't like doctors. Except for those doctors I really like.
Well, that's all I've got my friends. Thanks for checking in!
(darn, I've already used this blog title before too!)
Today goes down as one of our more exciting Sundays. *Yawn*
Mark and I, together (which is totally unusual) cleaned out and organized our linen cabinet. I found the 50 pillow cases I knew I had but could never find. It's amazing how much stuff you can shove into the bowels of a linen cabinet and never find ... until you pull every.single.item out of the cabinet. We've been married almost 21 years, lived in no less than five houses and changed kids' bedroom decor at least 10 times. We have a lot of linens.
Goodwill now has a lot of linens.
After that, I spent an hour (yes, an hour) cleaning the lint out of the lint screen area of the dryer. That was almost more fun than I could stand.
After that, I took a nap because after walking 7 miles in 100 degree weather at the crack of dawn, organizing the linen cabinet and cleaning out the dryer lint .... I pretty much had the life sucked out of me.
After I woke up, I mopped floors.
Bet your Sunday wasn't as much fun as mine!
Not much going on at the Ranch. (I don't know why I call it the "Ranch" - we don't live on or near a ranch?)
Eric and Mary are back into the swing of school. Mary is back on schedule doing her homework .... at 4:30am the morning it is due. Eric, he's back to procrastinating and yelling and fighting doing his homework every step of the way. Who says this is "the most wonderful time of the year" ?
This year, I signed Eric up for after school care a couple days a week - it gives him an opportunity to hang out with his school friends. It's pretty bad when you have to pay for your kid to have "play dates", eh?
Mary is gearing up to start the college admission process. She's pushing herself hard this year with the hopes of getting scholarships. She's still considering colleges in St. Louis as well as Northern Arizona University. The most important thing to her is that she gets far away from home. I'll miss her.
Hard to believe our trip to St. Louis is just around the corner. I'm actually looking forward to it. I really miss our St. Louis friends and our St. Louis doctors. I'm hoping to have some time to just relax and visit. October in St. Louis is fabulous. Fall colors, cool temps, sweatshirts and Starbuck's Pumpkin Spice Lattes. It doesn't get any better than that!
And, the news of the week ....
98 days, two hospitals and three nursing/rehab centers later .... my mom finally made it back home after breaking her femur back in May. She's still very weak and requires 24/7 supervision and assistance, but she made it home. Remarkable. Really, it is. What's even more remarkable is that my mom is three years post GBM resection and there has been no tumor recurrence. Statistically improbable, if not impossible. But, here she is.
Life is good .... make today a good one!
To answer Christy's questions, I used Picnik to make the collage with Eric and the California letters. It's a great, inexpensive program that you can have a lot of fun with.
As for the glasses, I'm pretty much a full time glasses wearer now (another fallout from getting older). I used to wear contacts for distance, but have to wear readers at work to see my computer and what I'm working on. The combination of wearing contacts and readers all day long put too much strain on my eyes. So, I've decided to ditch the contacts, wear glasses for distance and take my glasses off when I'm doing close up work. I even have prescription sunglasses now. How sad is that?!
So there you go, more than you wanted to know about my new glasses!
Happy Friday friends. :)
Thank you for riding along with us on our journey.
