Someone on topix had asked about Kate talking about Make A Wish on CaringBridge. This is all the Make A Wish things I could find.
Monday, December 27, 2010 12:06 AM, PST
Things haven’t gotten better. In fact, they’ve gotten worse. Joshua is having episodes of low oxygen levels evidenced by his lips turning purplish-blue in color, the skin around his mouth and over the bridge of his nose turning a dusky blue-grey and formation of dark purple circles under his eyes during “episodes”. He also gets extremely tired & develops a headache. After I told our pediatrician about what we were seeing at home, she loaned us a pulse oximeter to use over the holiday weekend. I picked it up on Friday and began actively paying attention to see when Joshua’s color was “off” so I could hook him up to the pulse ox and measure his O2 saturation level. He had readings down to 82-86% and many episodes where his O2 was 92-94% (normal is 95-100%). What does this mean, exactly, and what will we do about it? I don’t know yet. I emailed the results to the pediatrician tonight and will wait to hear from her tomorrow or Tuesday (she’s out of the office on Mondays).
I never heard back from Dr. W’s assistant, which is a first since they typically call back within a day of my leaving a message on the P.A.’s voicemail. I don’t know if that means there’s nothing they can do (which is what I expected) or what. Either way, their silence is not terribly reassuring to me.
I was informed by our ped’s nurse that the ped would be happy to fill out the paperwork to apply/nominate/refer (whatever the appropriate word is) Joshua for Make-A-Wish. I asked if he actually qualified for that program since the primary eligibility requirement is the child must have a life-threatening illness/condition, and I admit I was shocked when the nurse quietly nodded her head. I still am struggling to wrap my brain around the idea that he doesn’t have a prognosis for a normal life expectancy. This is one more “new normal” that I never saw coming & it’s the hardest one for me to accept, by far.
Joshua has a new prescription for pain medication ~ Lortab ~ and that is working better for him than tylenol with codeine was. He’s still not tolerating bolus feeds, so he’s back on a continuous feed of 2 ounces per hour for 18 hours a day & he’s doing well with that, which is something I’m thankful for. His weight was down to 37.5 pounds last Thursday, so we’re hoping to get a few pounds back on him & having him NOT puking is a good start to achieving that goal. He dropped from the 75th percentile in weight to the 25th percentile in about 6 weeks, which is concerning since he’s above the 75th percentile for height (44 inches). He’ll see his physical therapist tomorrow to assess his foot positioning & gait and perhaps determine whether he needs to be braced again (I don’t know if she’ll make that decision tomorrow or not), and I’ll be calling the ophthalmologist to make an appointment so the double vision/fuzziness that Joshua is experiencing can be evaluated. While it’s suspected to be “central,” we’re hoping maybe we’re wrong and the ophthal can do something to help.
It is heartbreaking for me to realize that I subjected my son to a surgery that did nothing to help him and that we’re now at a place where no one really knows what to do.
“Fixing” him seems to be the impossible dream and that’s a hard reality to accept.
Thursday, February 24, 2011 5:08 PM, PST
Joshua has had increasing headache pain that isn’t controlled by the combination of Lortab on top of his Neurontin. I called our ped yesterday for advice & she asked me to contact the neurologist & neurosurgeon, so I put calls in to the nurses of both of those doctors. Dr. W (neurosurgeon) said there was nothing she could do at this point since it hasn’t been long enough since she last went into Joshua’s head (which I knew… the first thing I told Dr. W’s nurse was that I was not asking Dr. W to *do* anything & I had zero expectation that she could help at this point, but I was advised to call & give her a ‘head’s up’ about how Joshua was doing). I asked Andrea (Dr. W’s nurse) if we could increase Joshua’s dosage of Neurontin & she came back with the information that Dr. W wanted that order to come from neurology rather than her since it was that specialty that put Joshua on the medication in the first place. Soooo… Andrea played phone tag with Lisa, Dr. H’s nurse, & the end result was Andrea calling me at 6 o’clock last night to tell me that Dr. H had left without checking her messages & she (Andrea) didn’t have a dosage increase yet. Sigh. Andrea assured me she would call today to give me the new dosing information, though, and after I thanked her for calling & not leaving me hanging, we hung up.
This morning, I headed out with Joshua, Bethany & Hannah for therapy appointments (B & H), a port flush (J) & labs (J). When I got home at 2pm, I asked Charley if Andrea had called yet & was surprised when he answered that she hadn’t. I called the neurosurgeon’s office & got their answering service telling me the office was closed due to inclement weather. Apparently the storm that our weatherman had predicted would drop 6-10 inches of snow ended up in Seattle & Portland, instead. Bottom line? I’m still waiting to find out how much to increase Joshua’s medication as we try to manage his pain in other ways.
Two “Wish Granters” from the Make A Wish foundation came to our house this past weekend to talk to Joshua about his wish. We’re waiting to hear if the corporate MAW agrees to grant the wish & once we know for sure, I’ll share what Joshie wished for. The whole MAW experience is an emotional one. It’s really fun & exciting to think about being able to do something for Joshua that we would not have been able to do without MAW, but it’s painful to know that the reason he’s receiving a wish is that he has a life-threatening condition. Yes, we know there are LOTS of kids who have had a wish granted through MAW & then gone on to live into adulthood, but even more children have not. Life-threatening means exactly that. Whether or not Joshua lives into adulthood remains to be seen; all we can see right now is the day-to-day stuff, which isn’t very encouraging, and as such, MAW is a double-edged sword from an emotional point of view for my husband & me. That said, we do believe seeing Joshua’s wish granted will be a wonderful experience for him & the rest of our family & we are looking forward to it.
Monday, April 25, 2011 5:11 PM, PDT
Surgery is over and went as well as it could. Dr. W said the inside of Joshua’s head was a mess, with regrown bone and a bunch of scar tissue everywhere. She cauterized his cerebellar tonsil way up and off his brain stem, which should help him. I am relieved surgery is over… now to get him recovered and out of here so we can get ready for his Make A Wish trip onJune!
I will update more after I get to see my boy. Thanks for the prayers and well-wishes.
Monday, May 2, 2011 12:50 PM, PDT
Joshua is essentially recovered from surgery. The only changes I’ve seen are that he now has apnea episodes while lying down, which is not good, but he can pop himself out of them without intervention, which is good. He’s having pretty intense headaches, too ~ severe enough to make him vomit. I don’t think it helped that the neurosurgeon decided at 5:05pm on Friday that it was time to wean Joshua from his PCA pump (continuous fentanyl) but didn’t bother to get any other form of pain relief arranged. She did say she’d call pain management, but again, at just after 5pm on a Friday, it wasn’t like anyone was going to come on the weekend. And they didn’t. Which meant Joshua had some rough patches on Saturday & Sunday. Which resulted in my increasing frustration because I don’t like seeing my child in pain & completely miserable. As of now, 1pm Monday afternoon, we’re still waiting to see if anyone from pain management shows up. He was weighed last night & we were surprised to realize he’s lost 2.3 kg (a little over 5 pounds) in the past 17 days. Yipes. I knew he wasn’t eating or drinking much of anything, but it didn’t occur to me that he might be losing a significant amount of weight. We’ll be starting tube feeds sometime today, but again, it’s a matter of having to wait for a doctor to order formula for Joshua & who knows how long that will take?
I think it’s time for him to be moved off the neurosurgeon’s service & back to the pediatric service. When Joshua was first flown up here 2.5 weeks ago, he was admitted on the pediatric service, which meant he saw a pediatrician every day & they took care of whatever need came up. Last Monday, when he had surgery, he got moved to the neurosurgical service, which made sense. But now that he’s a week out from surgery & there isn’t really anything more that Dr. W can do, I am thinking maybe he should be switched back to peds so that things like phone calls to the pain management doctor & formula for tube feeds can be taken care of right away versus at the end of the day when the neurosurgeon gets done with all of her surgical cases for the day.
Joshua still can’t sit up for more than a few seconds, but I’m not sure if that is related to surgery (low-pressure headache, perhaps) or the generalized headache pain he has. Truth is, I don’t know why he’s acting the way he is. All I really know is that his Make A Wish trip is coming up & I would like him to be able to enjoy himself, which isn’t going to happen if he’s hurting. As such, I want the pain management doctor to figure something out soon & get things underway so that Joshua can feel better & then we can get out of here.
Friday, May 13, 2011 6:25 PM, PDT
Joshua was discharged from the hospital in the late afternoon & we are now at the Ronald McDonald House until tomorrow, when we will leave to drive home! Yeaaaa!!!!!
I was taught how to mix his TPN & inject medications into it before hooking him up to it. I had a friend ask me what the difference was between TPN & gtube feeds, so here’s my ‘layman’s explanation’: formula that gets pumped through the g-tube goes into the stomach, where enzymes & gastric juices begin the digestion process, breaking food into smaller bits before it moves to the small intestine. Once in the intestine, the partially-digested food gets further broken down into basic substances ~ protein, carbs, fats, vitamins, minerals ~ and those get absorbed into the bloodstream, where they can be used by the body for energy & growth. TPN is a mixture of the basic substances that gets pumped through a central line into the veins to be used by the body for energy & growth. TPN bypasses the first stage of digestion completely. Joshua’s TPN will infuse for 16 hours each day, running from 5pm to 9am (or thereabouts). I’m happy that most of his waking hours will not be spent hooked up the pump.
All things considered, Joshua is doing great! If you compare him to a typical (ie: normal) 5 year old, then his being in a wheelchair, unable to walk right now (too weak after a month lying in bed), throwing up roughly 1/2 of what he ingests, being fed through a central line 16 hours a day, & needing a fentanyl patch & lortab after having a nerve block to control his pain probably doesn’t sound so wonderful. But when you consider that one month ago, he was admitted to the hospital in acute respiratory failure & right now, he’s not needing to be on oxygen, not needing continuous monitoring via pulse ox, and he’s not having episodes where he doesn’t breathe as long as we do not let him lay on his stomach (and yep, we have doctor’s orders saying he is not to lay on his stomach or hyperextend his head backward), that is pretty darn fantastic! I learned years ago to not compare Joshua to his peers because it results in my feeling sad; as such, I can feel sincerely happy that he’s doing so well compared to where he was a short time ago.
I have no idea what the future holds, aside from a trip to Give Kids The World through the generosity of the Make A Wish Foundation (yippee!), but as of tonight, Joshua is in the best shape possible to face whatever comes his way, which makes me one happy mama. I am so thankful for the doctors & nurses at Legacy Emanuel who worked so hard to get Joshua to this stable place ~ they are incredible & I hope I was able to adequately convey to them how VERY much they are appreciated. God has truly blessed us with a superb medical team to take care of my little guy & I feel so fortunate that they care so much about him. As we hugged nurses & thanked doctors before leaving today, it was with a measure of sadness because even though we’d rather not be in the hospital, saying ‘goodbye’ means we won’t see the people who have become like a second family to us for (hopefully) a long time.
Maybe it seems crazy to care so much about hospital personnel, but I don’t know how a parent avoids it when these hard-working people make such a profound difference in a child’s life. I’ll always have a soft spot for our medical team at Legacy Emanuel. They’re the best!
Saturday, June 11, 2011 5:38 PM, PDT
Today was a very special day ~ Make A Wish granted Joshua’s wish by giving him a game room! The original plan had been to send our family to Give Kids The World in Florida, but when Joshua was admitted to the hospital just 8 days after being discharged from Portland, his doctors deemed him not stable enough to fly across the country. It was just as well, since the trip was supposed to take place June 1st – 7th & Joshua was in the hospital until June 5th. Once we knew Joshua couldn’t go to Florida, we thought about what he could still do & what he really enjoyed and came up with an alternate wish for him.
At noon today, I took Adam, David, Sarah, Isaac & Joshua out for two hours so that the Wish Granters (Amanda & Michael) could come in & set up a 42″ flat screen television, DVD player, Wii with 4 controllers, drums & guitar (for the Lego Rock Band game) & 4 gaming chairs in what is now our game room (was the kids’ computer/play room). When we came home at 2pm, there were bunches of “Make A Wish” helium balloons at the end of our driveway & on our porch, welcoming Joshua and everyone who came to his party to celebrate his wish. He was happy to see his Grandma & Grandpa, our pastor & his wife, his beloved physical therapist & occupational therapist, one of his honorary Aunts & her son, the fabulous Wish Granters & our family, but his attention was primarily focused on the large pile of gifts sitting in the corner of our living room (we kept him from the game room until he’d opened the presents). 🙂 He had a blast tearing into the gifts, opening each one &periodically asking, “Why am I getting all of this Wii stuff? We don’t have a Wii!” After he’d opened the last gift, the Wish Granters led Joshua into the game room, where he saw the huge tv & the Wii and immediately hustled out of the room to go retrieve all of the Wii games & other paraphernalia he’d just opened. Once he returned, he couldn’t contain his excitement & was basically bouncing around, laughing & saying, “Ya hoo! We have a Wii!” He’s been in there ever since, taking only a short break to blow out the candles on his SpongeBob cake (we sang, “Happy Make A Wish Day to you,” instead of “Happy Birthday) & eat a little of the dessert (with ice cream, of course).
It was a magical day for our family. To see Joshua SO happy & having SO much fun as he was surrounded by people who love him & have been an important part of his life… well… I don’t have words to tell you how good it felt, but it really was special. No, it wasn’t a week-long trip to Florida, but in the end, I think this wish is even better, because playing games & watching movies are two activities that Joshua does every day & both make him happy. He will be able to spend time interacting with his siblings & memories will be made for so much longer than just one week, which completely warms my heart.
Friday, December 30, 2011 7:15 PM, PST
This is the medication it takes to keep Joshua “stable” for 36 hours. I drew them up for our trip to Portland. These will cover him for today & tomorrow until 4pm. Adam, Joshua & I drove to Portland today for Joshie’s photo shoot for the Community Hero exhibit. It was rainy most of the way up, but traffic wasn’t too bad. Joshua slept 90% of the way. We had to wake him when we arrived at the photo studio. Thankfully, we were 45 minutes early, because it took Adam & me a good 20 minutes to get Joshua awake & ready to go inside. He wanted to continue his nap!
The photo shoot went very well. Michael, the photographer, was amazing with Joshie & some of the pictures he showed me were tear-inducing. I told him, “Stop showing me these! You’re going to make me cry!” He gave me a side-hug & said, “Good! I want them to have that effect on everyone!” Joshua had a lot of serious pictures & then Michael got him giggling & smiling. Interestingly, the pictures the photographer preferred were the serious ones because he said Joshua has extremely expressive eyes & while he has a fantastic smile that lights up the room, his eyes disappear when he grins. He wants the exhibit picture to be one that shows Joshie’s contemplative side with his eyes open. I told him I’m sure whatever picture is chosen will be beautiful. He asked if we’d driven up from southern Oregon just to do the photo shoot & when Adam & I told him, “Yep!” he seemed shocked, then told us, “I should tap-dance for you or something to make it worth your while!” I told him that the pictures would make it worth our while. He ended up doing a 45 minute shoot instead of 30 minutes since we’d arrived early and he took extra pictures of Joshua with both Adam & me and some of Joshua with Adam & me separately. I’ll receive a CD of all the pictures taken except for the one that will be used in the exhibit, so I won’t know what picture they chose until the exhibit is unveiled at the end of May. I can’t tell you how valuable that CD will be to me. I am SO glad we got to do this. It’s an honor for Joshua to have been chosen as one of the 25 Heroes, and to be able to “memorialize” him in this way is so meaningful to me.
The CCA representative who was at the photo shoot asked me if Joshua had been granted a wish through “Make A Wish”. I told her he had & described what they’d done for my little guy. She said that was great & then told me that her organization wanted to offer Joshua a wish, too. I was speechless! The woman asked Joshua what he wanted if he could have anything & he very enthusiastically replied, “A laptop! I’m saving my money for one!” She smiled & told him, “We can do that!” Then she looked at Adam & me and asked, “Is there any specific kind you want for him?” We gave her some preferences & she jotted down notes, then told me she’d be in touch about getting that to Joshua. So… wow! I was completely shocked. The kindness of people never ceases to touch my heart, especially when it’s kindness aimed at Joshie. After the photos were taken, the boys & I headed out of town toward home. We drove 1.5 hours (Joshua slept for an hour), then checked into a motel for the night. And that is where we are right now. Joshua is very, very tired. The day’s activity has wiped him out. He is cozy & warm under two of his fleece blankets as he finishes up a tube feed & dozes on the bed beside me. Actually, now that I look over at him, he’s sleeping again. It’s sad that a day like today, where all he did was ride in the car & attend a photo shoot, could exhaust him the way it has, but that’s the reality of life. Tonight I am choosing to be happy that he was able to enjoy himself for those 45 minutes & that we were able to make this trip at all.