Monday, March 30, 2009

Monday, March 30, 2009



Quote of the day: "May God give you...For every storm a rainbow, for every tear a smile, for every care a promise and a blessing in each trial. For every problem life sends, a faithful friend to share, for every sigh a sweet song and an answer for each prayer." ~ Irish Blessing



Peter helped me get Mattie ready this morning to check into the hospital. His presence really helped make the process go a bit smoother. When Mattie and I arrived at the hospital, we had a very hard time parking. We landed up getting the last parking spot, and of course all the elevators from the parking lot to the hospital were broken. So I had to wheel Mattie through the garage, up many ramps to get into the hospital. This alone is taking your life in your hands, since on some ramps it is challenging for cars to see pedestrians.

We arrived in the clinic and Mattie was happy to see Jessie. Mattie began by constructing a wooden model kit of a plane. Shortly there after, Junko (a SSSAS mom and friend) arrived and she brought Mattie several wonderful gifts. She brought him a bag of plastic flies and spiders. Mattie decided to build a house for these insects out of a cardboard box, and to add insult to injury, he had Jessie gift wrap the box, so that he could pretend to give one of his nurses a gift. Some gift! He tried this gift out on Dr. Synder and Sharon (our Georgetown Chaplain). They know Mattie, so they knew the box could potentially have a creepy crawler in it. They were right! Junko also brought us a lovely lunch! However, Mattie was on the moody side today, but by the time he got up the PICU and played with Linda and Laura (one of Linda's interns) his attitude started to improve.

Two things greatly bothered me about today. The first issue, was the admissions process. This is our 52nd admission to the hospital. In fact we were in the hospital all last week. However, despite the fact that we are a known entity, with no insurance or address changes, we must go through the same bureaucratic registration process with each admission. To my regular readers this doesn't come to you as a shock. You have heard me complain about this, but I guess what incenses me is that despite complaining verbally and in writing, nothing gets done about the process. I can assure you moving in and out of the hospital weekly is stressful. Why complicate the process further by having patients jump threw one more hurdle? I get very frustrated when I feel like I am communicating clearly, and think I have made headway in a system, just to find that I am back at square one. This issue is bad enough, but the second issue had me pacing around today.

The second issue, which again, my regular readers are well aware of, is that there is a Vistaril shortage at Georgetown. Vistaril is a type of antihistamine, but it is very effective as an anti-emetic for Mattie. For weeks, I have told Mattie's doctors about my concerns about the dwindling Vistaril supply at the Hospital. They assured me they would look into it and if they couldn't find more they would come up with an alternative. I want our readers to understand, as the nurses have educated me, that you want to prevent Mattie from experiencing nausea. Because once nausea starts, it is hard to hold it back and possibly prevent vomiting. So to me, Vistaril is vital to ensure a certain level of comfort for Mattie through chemo. Thanks to Mattie's blog, I have had the opportunity to meet a lovely family from Pennsylvania. This family's daughter uses Vistaril and they let me know their hospital has an adequate supply. I even alerted our doctors to this information. So why Georgetown feels there is a national shortage is beyond me. We have even found a supply at Duke. But again, even today, Georgetown's pharmacy claims there is a national shortage. I have been addressing this issue for weeks with Mattie's doctors, because I wanted to prevent exactly what we are dealing with NOW. As of today, there was NO vistaril available for Mattie. I blew the roof. After which, they did locate the last vial in the hospital, but it isn't enough IV vistaril to carry Mattie threw the week. Because we have to conserve this last vial, the doctors expect me to wake Mattie up periodically through the night to give him oral vistaril. I am not sure why they don't see the problem with this? I am sure any parent reading this blog gets it immediately! Mattie needs rest. But no, instead I have to disturb his sleep to wake him up to take oral medication. Mattie is not very complaint with oral medication, and I can assure you I dread his 2am dosage! Mind you all of this could have been avoided if the doctors and pharmacy were proactive and obtained the IV vistaril weeks ago, when we brought this to their attention. I also want to mention that I did not only mention this issue once to the doctors, I addressed it numerous times. So often, that all the nurses on the floor knew about our issue. So tonight, I feel this is just another example in a sea of examples, that illustrates my disillusion with the medical community. Their decisions have real world consequences on their patients and families. I personally would love to get Mattie's doctors in our room at 2am to administer this oral medication. I would bet if they had a couple of sobering reality checks, it may make them think twice about placating parents and assuring us they are on top of our requests, when it clearly is not a priority for them. My favorite line of reasoning today is that Mattie is getting a lower dosage of Ifosfamide this week, so he most likely won't get nauseous. This line of reasoning is based on what? We do not know how Mattie will react, and I rather be prepared with the medication than not have it at all.

Mattie had a wonderful time playing with Laura today and two wonderful male volunteers! While Mattie was occupied, I had a lovely time chatting with Junko. In addition, Junko gave me one of her signature massages. I think she found more knots in my back and shoulders than she knew what to do with. I always appreciate her visit, her generosity of time and spirit, and her support. Junko took the day off of work to help me out, and I will never forget such acts of kindness.

Peter arrived from work this evening and found Mattie's room brimming with people. We had volunteers and nurses visiting! Mattie is a popular fellow. Peter literally had to hand me our things through the doorway, because he couldn't get in himself. I was able to unpack our room, while Mattie was being entertained on the floor. In addition, Jerry and Nancy (our favorite musical volunteers) came tonight. They were prepared to do a Name that Tune game with Mattie, but by the time they arrived, Mattie's energy level was decreasing and he wanted to watch a movie instead with one of the male volunteers. So Jerry and Nancy will save the game for another week, but Jerry brought a prize for Mattie for when he wins the game. Mattie perked up with that notion. The silver lining to my day was Jerry took myself and Nancy out to dinner tonight. I have gotten to know these two lovely individuals well, and Jerry has wanted to introduce Nancy and myself to the "Mighty Moe." The Mighty Moe is a hamburger like no other, and apparently it is a Washington, DC tradition, that you could have found at the once existent Hot Shoppes restaurants. Now the only place you can experience a Mighty Moe is at the Key Bridge Marriott. It was a lovely dinner and conversation, and I really needed the opportunity to step away from the hospital tonight. I can't thank Jerry enough for his generosity. Jerry is also the person who donated a keyboard to Mattie. Just to put his level of support of my family in perspective!

Mattie did receive MTP-PE today and did just fine with that infusion. Despite getting to the hospital today at 11:30am, Mattie began his 30 minute doxorubicin infusion at 9pm. While I write this, Mattie is receiving his four hour infusion of Ifosfamide, and the infusion will be complete around 1:30 or 2am. Just in time to take the oral medication! Clearly the fun never ends in our room!!!

We want to thank Erica Jones for a lovely and generous dinner tonight. Mattie literally ate ALL the bread and butter, and he loved the lasagna! Thank you for supporting us on our first night back at the hospital this week.

I would like to share a message I received from my friend Charlie. Charlie wrote, "Rainbows are special. They take both rain (tears) and sunshine (smiles) to make them appear. They are fragile and vanish quickly so if we are to appreciate them and share them with others, we have to stop what we are doing and pay attention to them. They are a symbol not just for hope and promise but for all things precious and fleeting like childhood. We have to stop and enjoy our children while they are small as they will not be that way very long. Next week is Mattie's birthday and I am sure there were a number of medical personnel who were convinced he would not be here to celebrate it. Thanks to your dedication and determination and Mattie's spirit, he will be here to celebrate and may he have many more to enjoy after this one!"

I end tonight's posting with a quote I received from my mom!

How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving and tolerant of the weak and strong. Because someday in life you will have been all of these. ~ George Washington Carver