Saturday, August 15, 2009

Saturday, August 15, 2009

Quotes of the day (Thanks Tad and Charlie): "Children are the bridge to heaven." ~ Persian Proverb

"Silences make the real conversations between friends. Not the saying but the never needing to say is what counts." ~ Margaret Lee Runbeck


Today was NOT the day I was hoping for. It is funny, because even as I am typing this statement it sounds absurd. Absurd because we have lived through 365 days that we weren't hoping for, and we have many, many more to come. None the less, our goal this weekend was to make Mattie happy at home. That clearly did not happen today!

Mattie had a restless night, was moaning a lot, but was manageable. However, as the morning hit, he became more and more nauseous. No amount of anti-emetics helped Mattie this morning, and believe me I pushed IV Kytril and Zofran around the clock. Mattie was continuously vomiting. In addition, he was experiencing intense pain, but was unable to swallow any of his oral medications. The only items I was able to administer were IV medications such as his nutrient TPN, which ran over 16 hours, his vancomycin (antibiotic for a staph infection), and his anti-emetics. But as the morning continued, there was nothing I could do for his pain. I felt helpless, and SO frustrated. I tried rationalizing with Mattie the importance of taking his oral medication, but that was a losing battle, and the more I insisted, the more frightened and anxious he became. So I quickly realized that tactic wasn't effective!

While I was trying to handle Mattie, Peter was running around trying to fill an instant release morphine prescription. He went to our usual pharmacy, who said they had this medication. So Peter waited for 30 minutes while it was being filled, only to find out in the end that the pharmacy did not stock the medication. So much for customer service, and you have to wonder why the pharmacy did not even think about calling other pharmacies to find out other options for us. Any case, Peter came home, told me the story, and said he was going to try calling around other pharmacies to locate the drug. At which point I said absolutely NOT. I told him to call Dr. Shad and get her residents to do this! We had our hands full with Mattie, and I wasn't going to tolerate such busy work today. Peter did call Dr. Shad and within 30 minutes, the hospital tracked down a pharmacy in Capitol Hill who had this medication. So Peter went out a second time. However, each time Peter left, Mattie became more and more unglued. In fact, I was text messaging Peter throughout his trip because I wasn't sure how much longer I could manage Mattie's pain without this medicine he was getting filled.

Mattie did periodically nap at home this morning, because he was burning up with an 101 fever and of course was writhing in pain. However, he wanted me right by his side, so somehow I never made it out of my pajamas or even ate for most of the day. When Peter got home with the morphine, I could see quickly that things were totally out of control. So I had Peter sit with Mattie and I immediately called Dr. Shad. I told her about the fever, the pain, the uncontrollable nausea, and vomiting. She asked me if I felt he had to come in, and I said absolutely! I had to break the news to Mattie, but I think he was in such pain, he was open to anything to take it away. None the less, he wouldn't go in the car without receiving more anti-emetics. Though he wasn't due for a dosage, I caved in and gave it to him. Peter then lifted him up and into his wheelchair and they were off to the hospital without me. I stayed behind to clean up the mess that was created from the morning, and to take a shower and potentially pack for a hospital stay.

Before heading to the hospital later in the afternoon, I stopped at a local store in our complex and picked up lunch for Peter and I. While I was in the store, music was playing in the background, and guess what was playing? ABBA's Dancing Queen. I literally must have looked like a statue. Because hearing the song flooded my memory with all the physical therapy sessions Mattie had while he was learning to walk again. I associate the song with Mattie's fight against Osteosarcoma, and at the time, we were hopeful that maybe he was going to be the one in a million miracle.

At around 4:30pm, I arrived at the hospital, and I could see Mattie was MUCH calmer. His vitals were great (NO need for oxygen today!!!) and the IV morphine eased his pain tremendously. So I could see that my mission was to get a Patient-controlled analgesia (PCA) pump at home ASAP so we could go home on Sunday. A PCA allows a patient to self-administer analgesics (pain medications) intravenously by using a computerized pump, which introduces specific doses into an intravenous line. I expressed our wishes to Dr. Shad, and the residents contacted our in-home pharmacy service today to try to coordinate a delivery.

After speaking with Dr. Shad, I decided to go home, and pick up things that we would need to spend the night in the hospital. Sure I could have done that on my original trip into the hospital, but I guess a part of me did not want to admit that we really needed to stay, even though my gut instinct told me otherwise. While at home, I spoke with Dr. Synder, Mattie's oncologist, and she is working on presenting me other options to relieve Mattie's pain. They all involve different forms of chemotherapy, so Peter and I will have to seriously think about this. Now we are of a different mindset, caring for Mattie now is about comfort and compassion, and not about fighting the "bone bugs."

Mattie has had a very peaceful night in the hospital. I talked to Dr. Shad about starting Mattie on an IV anti-anxiety medication, and he started Valium today. Peter and I have noticed a big difference already, and in fact, it helped slow him down, so that at midnight he is actually sleeping. I am not sure he will need this at home, but he definitely needed it today, since he was in a very fragile and volatile place. I can imagine as pain builds up, and you don't experience any relief, anxiety is therefore a natural byproduct!

We want to thank the Lee's for a wonderful home cooked dinner tonight. Julia we loved your chicken and rice, and I can't thank you enough for the home brewed Earl Grey iced tea. I am a big Earl Grey tea fan! I also meant to thank whom ever sent us the most beautiful gerber daisies in the mail yesterday. They are a peach color and they look so happy. The card was lovely, but it wasn't signed, so I have no idea who sent them to us! But we thank you, they are so appreciated!

As we head into Sunday, our goal is to figure out what medications Mattie will need at home, and get him discharged tomorrow morning. Wish us luck with that! We did receive the PCA tonight and the IV morphine. Our in home company literally hand delivered it to me in the PICU. I am just so impressed how forces were mobilized today to make this happen.

I end tonight with three messages I received today. The first message is from my friend, Charlie. Charlie wrote, "Of course the path is never an easy one; Friday had to be an impossible day. An extra long procedure in radiation oncology with some very thoughtless people, followed by the whole situation in ultrasound with no door, no seating, no concern. And then to find out that the scheduled procedure could not be done after all and Mattie was transported back to the PICU without you. What an incredibly distressing day. Even though you finally got to go home at the end of all this, there was so much more to cope with. The possible infection in Mattie's line and the required antibiotics, the TPN via IV for 16 hours a day and Mattie's added anxiety. It speaks volumes that he was able to smile and enjoy some time in Speedy Red with all that going on. I am so glad you went with your instincts and got Mattie the car; you can see from his smile that it is making all the difference at this point for him. I know you are not a fan of medication but whatever makes Mattie's life better and more tolerable for him now is a good thing to consider. It is important for him and for you that he be calm enough to enjoy the time he has while he can since we don't know how the progression of the cancer will go. The best thing to do is to proceed as you are, enjoying and treasuring every moment you can and letting go of as much small stuff as you are able. I hope Saturday's trip to the hospital for the blood test is uneventful, the news about the infection is good and that you are back home quickly with Mattie."

The second message is from a colleague of Peter's. Sharon wrote, "I’m so happy to read on your blog that you and Mattie are home from the hospital, and able to be in your own surroundings. And especially happy that Mattie is able to enjoy some time with Speedy Red again. It must be so empowering for him to be able to race around under his own steam. And what little boy wouldn’t love such a car! The three of you have never been far from my thoughts over the past year, and I find my mind turning to thoughts of you and your struggle frequently since this most recent prognosis. I can see from your writings, Vicki, that you are working hard to process, accept, explore, plan, and I’m a little amazed that you even have the mental strength to process anything given everything you have to deal with on a daily basis. You’re amazing. It’s impossible to explain or even contemplate why Mattie has had to go through this horrible disease, but it’s clear why you and Pete are being asked to go through it with him – because he couldn’t have asked for better and more loving parents to help him through everything. Pete, my heart goes out to you. I think there have been a lot of tears recently in the world that Mattie has touched, and there will of course be many more. I don’t know how you’re holding up, and while my first wish would of course be health for Mattie, my second would be for a lessening of the pain for you."

The final message is from a fellow SSSAS parent and new friend. Laurie wrote, "I didn't want to let too much more time go by before letting you know that you are in my thoughts and prayers every day. I attended the wonderful prayer service last night and one of the exercises Ashley had us do (just as a means of facilitating our conversation) was to write down what we thought was Mattie's legacy -- in our view. I wrote down some thoughts and then decided it made sense to share these with you and Peter so you could know what your story has meant to me, a fellow St. Stephen's parent, but really just as a fellow parent... Mattie's effect on my life is immeasurable. I think of him (and you!) every day and I want you to know I thank you for sharing him with all of us. Whether he exhibits good or bad (!) behavior (and every single one of us can relate to your intermittent challenges with him) he's been a joy to get to know. He makes me laugh (for instance his love of taunting you with bugs -- and Peter's part in this as well!) and I often fine myself marveling at his insights and point of view. I'll always remember what pleasure he gets from just "playing" (and I totally understand how wearying this can be for you -- even under the best of circumstances!). Whenever I think of Legos, I'll think of Mattie Brown. Mattie is a gift and he could not have had better parents. Thank you again for sharing your gift with us. We are all better for it."