First let me say…I’m really sorry for the delay in posting again. I very much appreciate the feedback and support we have received from all those walking Declan’s Journey with us and will try to do a better job of getting online each day.
So to catch you up…
We were up early for our ambulatory trip to the Proton Center and our weekly “see” with Declan’s Proton doctor, Dr. Grosshan. Each week we have an appointment to see our Radiation doctor to make sure everything is going well with Declan and the treatments. So far he is pleased with how he’s handling the treatments! This is me and Declan waiting to see the doc.
We headed back to the hospital and were pleased to learn Declan was getting released! His counts had come up and his vomiting was under control. Woohoo! By dinner time, we were home and with the family again. :)
We were up and off again early to the Proton Center. Ok, so I used to work…there fore, I’m used to getting up early…or I was. Those early morning wake-ups for the Proton Center are just so hard. I’m sure it had to do with the 2-3 times a night I’m up giving medicine, turning on his feeds or comforting Declan back to sleep at 4am. What is it about the 4am to 5am time frame that entices Declan to get up? I mean, it’s almost like clockwork. Some days I’m more lucky than others and he’ll fall back asleep with little fanfare. However, most days it requires a decent amount of rocking (without my trusty dusty, awesome glider I might add!), singing (ok, humming…I’m a terrible singer!) and just about what ever will get him back to sleep. Any way…complain, complain!
So after our treatment, we head over to the main building (one of these days I’ll write about Texas Medical Center…it’s huge) for our weekly appointment at the Children’s clinic, our local Oncology team. The appointment is at 10 so we get our labs pulled and after a short wait (miracle!) we head back to the room to meet with our doctor. During our appointment, we reviewed Declan’s blood work and the decide a blood transfusion is in order to maintain his counts about the optimal levels for kids receiving radiation and chemo. We are also due for our big chemo on Friday but Dr. Vetts, the stand in for Dr. Wolff while he’s out of town is concerned about his counts so he wants to see how he does before we get admitted for this round to begin. Ok, sure…no problem. So they leave the room and I get Declan to settle down for a nap. And he slept…for about an hour, then it starts to dawn on me that hey, they may have forgotten about me back here. Long story short and after walking Declan in the halls, they realize that I was indeed forgotten. Now, I would have said something sooner but Declan hasn’t gotten blood in the clinic yet so I had no idea where we would get it…plus he was sleeping. The old adage is true…you don’t wake a sleeping baby. I have learned the hard way on several occasions during our stay here that statement is true.
So we head out to the waiting room to wait for his blood to come up. (Insert whistling here) And we waited. (More whistling) I’m starting to get light headed at this point and let them know I’m running down stairs to get something I can eat in the room with Declan as he’s getting his blood (which is a 4 hour process when he’s in patient here). I race downstairs and back up to the waiting room, and wait some more. Finally at about 3pm…yeah for those of you paying close attention, our appointment was at 10…AM. The good news is they are going to give him his blood in 2 1/2 hours instead of the normal 4. Woohoo! Thankfully, Declan was tired and before they even hung his blood, he was asleep in the bed. (Sidebar, the room was like a mini hospital room with a bed and tv.) So I ate lumch, more like linner, and decided to read for a bit. I would like to use times like these to blog but their internet is awful and worse no connection in some places, like the clinic. About an hour and a half in, Dummy here, realizes she could snuggle up next to Declan instead of doing the head bob in the chair in the corner. And so I did. We had a nice little cuddle and nap for about an hour. It was lovely.
Declan woke up just as his blood was finishing and after the obligatory 30 minute reaction wait time, we were on our way home again. Woohoo!
Grammy was kind enough to sit with Declan while Daddy, Cole, Brady, Rachel and I went swimming. Brady has become quite the Aquaman…he really is doing quite well. Cole just splashes non-stop, laughing all the way. It was a nice time.
I’m looking forward to today…we have our Proton appointment and then nothing else. Ahhhhhhhh! This is going to be great! A day of nothing. Heck, I’ll even be able to go to breakfast with everyone back at the hotel (because it’s only 8:30). Woohoo! (You sharp tacks in the group are probably sensing the sarcasm here.)
Soooooooooo, I get back to the hotel and a call on my back lets me know I’m in time to meet everyone downstairs for breakfast (they do a great complimentary spread). I pull into the parking lot and here’s where my morning goes south. Actually, my morning going south, pales in comparison to Declan’s. Not trying to scare you, he’s fine now but well, you’ll see. Ok, so a little refresher…Declan doesn’t consume food orally right now, he’s fed on a g-tube (those of you who’ve had experience with a g-tube probably know where I’m headed with this). The g-tube was surgically inserted into his tummy through his abdomen and we give him formula through the tube. The tube is actually connected to a “button” which sits on the outside of his tummy, is connected through to his stomach and is held in place by an inflated balloon on the inside of his tummy. No stitches. It’s pretty amazing actually. It kind of healed like a pierced ear would.
Declan can’t eat for 8 hours leading up to his radiation therapy so I’m pretty keen on hooking him back up when he comes out. He has this little backpack thing that houses the pump and his food which is fed through the tube. We have to be careful to make sure the line is protected to ensure it doesn’t pull on the g-tube or horror of horrors, get caught and pulled out.
Ok soooooo, I go to get Declan out of the car (now you all probably know where I’m going with this…horror of horrors) and his tube has slid into the seatbelt holder place for his car seat carrier…no problem, I see it and move it but it slides back into place. Harmpf, ok, I’ll hold it with one hand away from the seat belt thing while I put Declan in the stroller….problem solved. Yeesh, I’m getting the shivers again as I get ready to type this. So I lift him up and turn to put him in the stroller and he lets out this amazing yell. At the same time I feel my tummy getting wet…and horror!…I see the g-tube button, still attached to the tube, laying on the ground. OH MY GOD, I’ve just pulled out his g-tube!!! I am freaking out. Declan is not too happy with me either as I’m trying to lie him down in the front seat to assess the damage. Thank you God, it’s not bleeding and thank you Cristi for the Emergency GT kit!! Honestly, I was loosing it mentally at that moment because I had caused Declan unneeded pain. I call Stan in a panic and tell him to come out to the car to help me. Honestly, the Emergency kit pulled me into action…so the deal is if it gets pulled you have to put something in it’s place or it can close back up (you have some time here but not a ton but a few hours) and another surgery would be needed to replace it. UGH!!! So I get the tubing out of the kit and with a deep breath, I inserted it into his tummy, apply gauze and am taping it in place when Stan shows up. I pick Declan up and am able to console him enough to get him back in the stupid car seat so we can head to the ER.
Now I recall being told it’s not uncommon for this to happen and Stan is kind enough to remind me of this but all the way to the hospital I’m feeling about as low as anyone can feel…still feel pretty bad about it to be honest. Once at the ER, we are brought to a room where a surgeon is called to come assess the damage. After some time there, the surgeon comes in and she is as nice as she can be. She checks him and all the while she’s coaching us on how we can potentially replace it ourselves if it happens again (yeah right!). We both watch as she puts it back in and inflates the balloon back up…and we’re good to go. I shudder at the thought of it happening again but if it does I imagine I’ll feel comfortable putting it back with her tips. During the whole process Declan either slept or flirted with nurses…he’s amazing. Here his is sleeping with the repair kit in place…
Here he is in the car on the way home…
BTW…although I think it caught on something else, the offending seat belt holder areas have been taped up….I actually did it in the car on the way to the ER.
The remainder of the day, we took it easy…lots of napping in Mommy’s arms for Declan. Honestly, he did really good the rest of the day. He’s such a trooper. (He’s TOTALLY getting an extra present, or 2, from Santa this year for this!)
So we headed off to our early morning radiation and then we’re on our way to the clinic for another blood test to see if Declan’s counts are strong enough for him to be admitted for this round of chemo or if we need to wait until Monday. After his blood is drawn, we wait for it to come back and then we head back to the room. My Mom was with me and I snapped this picture of Grammy and Declan playing. I love it!
After some debate with the doctors about when Declan’s next big round is supposed to start…his original doctor was back on Friday so we went over the calendar and confirmed he was supposed to get the big round. He was under the impression it was next week. At any rate, his counts were still low so they are delaying the big round until Monday to allow for his counts to come back up. So Monday we’ll head to the clinic after his radiation and most likely will be admitted.
We did still get his Vincristine Friday so we had to wait a bit for it to be ready. Mom and I went back into the room where she snapped this picture of me with him.
He really does handle a lot of this so well.
So after another loooong day, we all headed home for the day.
Today was a relaxing day. We were contemplating a few things but ultimately decided to lay low. One reason is because we were taking my Mom to the airport. After a month, my Mommy had to head home. It was tremendous to have her here. She worked all day, every day, (along side Rachel) to help keep Brady and Cole happy and fed and clean and amused…all the while, cleaning up and doing our laundry so we wouldn’t be burdened with it. She was such a huge help and we were sad to see her go. Me especially, I enjoyed the time we shared here. Thank you Mommy!
So now, you’re caught up…I will try my very hardest to keep you updated at least every day or two…I won’t go 4 again. Promise!
Oh yea, I almost forgot…Saturday was the boys 10 month birthday. so hard to believe it’s been 10 months. In some ways, it seems like yesterday and in others it seems like an eternity. Happy Birthday sweet boys…here are the birthday boys!