Sunday, September 21, 2008

Sunday, September 21, 2008

We were struggling with Mattie last night (saturday) into this morning about the need to start drinking and eating something. On saturday night, I was able to coax him to drink three teaspoon fulls of water. But that was a chore. This morning, the issue continued. We begged and pleaded with him to drink something, anything. Believe me, we tried everything. He refused. We talked about why he wasn't drinking, and we got all sorts of responses from it hurts his tummy, to something more complex. He said he was afraid to be off of the IV machine. Peter and I both talked with him about this, because he said that the IV pole made him feel safe. We then reminded him that he was taken off the IV pole yesterday for a brief time, and everything was fine. But there was no rationalizing with him. He did appear to want to eat some of his breakfast, so we dropped pushing fluids and moved onto food. The hospital served him scrambled eggs, and he decided he wanted to eat that, of course to me, eggs on a sensitive stomach do not seem to be a good combination. But we went with it. About two hours later, Mattie began vomiting again. In the midst of the vomiting we also learned that Mattie's hemoglobin count was low today (below 8) and therefore needed a transfusion, and of course we were still dealing with one blocked lumen from the night before. So we had three issues to contend with, which only further frustrated Peter and I because it was our thought we would be released from the hospital in the morning.

As the day continued we resolved one issue at a time. Our nurse Miki (a real angel!), placed tPA (tissue plasminogen activator) into the blocked lumen of the central line and let it sit for an hour. After that, she went back at it with a syringe and was able to finally break open the clots in the lumen entrance. We felt very happy to resolve this problem, and learned that this most likely happened the day before when they lowered Mattie's fluid rate down to 15ml/hr. Peter and I are certainly getting quite an education, but one thing we do know is we have to keep "sparky," Mattie's central line open and operational. Miki also helped us resolve the second issue, the vomiting. She administered Kytril, and about 45 minutes later, Mattie was on the mend. The last issue, was Mattie's low hemoglobin (the iron containing oxygen transport protein in red blood cells) level. This was a little more complex to solve, because it involved the need for a transfusion, which took about four hours to complete. I knew that a transfusion was bound to happen one of these days, but I never thought it was going to happen today. I have my own issues about blood transfusions and I really wanted to refuse putting Mattie through this today, but I knew that it wouldn't be in his best interest. In order to have the transfusion, Mattie had to get his blood typed and crossed today, to determine his type and other factors. Then Peter and I had to sign an informed consent to receive this blood. Mind you when the blood gets transfused into Mattie, Miki (his nurse) stayed in the room with us for 15-20 minutes to make sure Mattie did not get a reaction to the new blood (such as fever, rash, or rigors - intense shaking). This was not even something Peter and I were aware of, that there could be some sort of reaction to a transfusion. When Miki saw that Peter and I weren't briefed on this, she immediately called the doctor, because it is the hospital's policy that parents be told of any possible reactions when receiving a transfusion for the first time. I really appreciated Miki's advocacy for Mattie and for us. What continues to amaze me are medical doctors. I am wondering if they are just too far removed from the clinical, day to day processes to really understand the ramifications their prescriptions and medical orders have on us (those of us receiving the care). It is one thing in theory to tell a family your child may need a transfusion down the road, and quite another to be sitting in front of a tired family, who has a child with cancer, and then just matter of factly delivering the news that a transfusion has been ordered and will be started within the next 30 minutes. Again, it takes away any power you as a parent have in the decision making process, and I wonder if doctors would react the same way if we put them in the same situation as us? Would they be so nonchalant about the whole process if this where happening to their own child? I wonder!

I went through the transfusion process mostly upset, and Miki could see this. She understood my concerns and dealt with each one very professionally. Again, thank God for nurses, because they know how to sit through the process with you and have the day to day observation skills that are so needed for parents going through such a nightmare. As the transfusion was coming to an end, Peter and I slowly started to pack up and get Mattie ready to head home. Meghan, our resident, was kind enough to send us home will all the medicines we needed for tonight. That was a blessing, so we did not have to run home and out to a pharmacy.

Coming home is always hard because it involves unpacking bags, putting laundry together, getting reoganized, going through mail, and so forth. Just imagine what it is like when you come home from vacation. You have nothing in your refrigerator, and things are piling up all around you. Well for us, we have this feeling each time we come back from the hospital. It is simply tiring. Mattie is in good spirits tonight. He drank half of a vanilla milkshake (Hey!!!) and ate two bowls of pasta. This is a great news, and now he is sleeping. Against my better judgment, Mattie is now sleeping on an aeromattress in our room. I just can't handle the 4am wakings, and I am hoping if he is in the same room with us, he will feel more secure. Time will tell.

On the electronic front, I want to thank Coach Dave (congratulations on the team's win), Wayne H. (for the virtual candle and mass said in Mattie's honor today), Barbsie, and Karen (great horse pictures) for your e-mails, and Kim and Lorraine (what a special angel card) for your wonderful e-cards. All these messages mean so much to all of us. Thank you Katie and Anna Parker for a wonderful dinner tonight. There is nothing like homemade stew. We thoroughly enjoyed it! Thank you also for the wonderful bag of halloween gifts. The scooby book and the ghost keychain were a hit! We received a very meaningful gift today from my mother-in-law, Barbara. Barbara's friends gave her a vial of holy water from our Lady of Lourdes. I want to thank the Carey family for this water and for the special mass being said in Mattie's honor. In fact, I opened up the vial today and rubbed the water over Mattie's right arm.

I leave you tonight by sharing a story about a new friend I have met through e-mail. Wayne H. lives in VA and lost his wife to breast cancer. When he heard about Mattie's carwash fundraiser through a community listserv he is a part of, he immediately mobilized forces and not only attended the event, but he has encouraged his church to become involved by sending e-mails and prayers. Wayne was in fact the FIRST car to get washed at Mattie's carwash on saturday. But this wasn't just any car, this was Jenny's car (Wayne's wife). I told Wayne that Jenny would have been proud of him that he took her car to such an important fundraiser. Jenny was a professional therapist who helped many children and their families, and it is ironic, even though she is no longer with us physically, her memory continues to help those around us. I feel honored that Wayne and a part of Jenny were at Mattie's carwash on saturday. What intrigues me about all of this is that cancer seems to level the playing field, and has a way of uniting all of us that it touches. I personally could have done without this experience, but if I have to go through it, I must say I am learning some very valuable life lessons.