Quote of the day: "Courage is being scared to death... and saddling up anyway." ~John Wayne
We can relate to John Wayne's quote. There is a lot about Mattie's disease that scares Peter and I to death, but we have no other alternative than to attack the issues head on for Mattie's sake.
Mattie had a very rough night of sleep. He was tossing and turning throughout the night and was very upset. I had to lie next to him many times last night, which was a feat unto itself, since Mattie was rotating in bed to get comfortable. I never found him in the same position twice. At one point, he had his head against the wall, and his legs hanging over the side of the bed, and yet he was sleeping! He woke up this morning and was tired and agitated, but he was excited he was having company over. Margaret, his first preschool teacher from Resurrection Children's Center, came over to spend the day with Mattie, so that I could go out. A lovely gift! In addition, Margaret also had Mattie's RCC friend, Alex, come over as well, so the boys could have a play date while I was away. Both Margaret and Julie (Alex's mom and our friend) fulfilled Mattie's request for Golden Oreos. Thank you! They have come in handy tonight at the hospital! I also appreciate you bringing over all sorts of foods for Mattie, to inspire him to eat. I am so happy that Mattie had a good time playing with Alex. It sounds like they were very busy, and they even made an elaborate blanket fort in Mattie's bedroom. Check it out!
Left: Mattie and Alex with the blanket fort!
Right: Mattie defending the fort!
While Mattie was with Margaret, Alex, and Julie today, I went out with Ann and Tanja. It was nice of them to include me on their afternoon out, and it went too quickly. But good times always do. Before I went home today, I also had the opportunity to spend about an hour with Ann's parents at their assisted living facility. Ann's mom and I worked on removing the contents out of her winter purse and moving them into a spring purse. Sounds trivial, but when you are trapped in a facility where you can't tell what time of day it is, much less what season it is, doing such a simple task becomes very important, and I was glad I could be there to help. It was fun going through Mary's purse with her, and digging through old papers and cards, and reliving the moments reflected in these documents. It is a special gift to be welcomed into some one's life, and I am happy that despite what I am going through I have not shut myself off to this important aspect of life.
When I arrived home, I couldn't get over what I saw. Outside my window, part of my third floor balcony was MISSING. In addition, there were two guys on the balcony drilling, and there was also an enormous crane moving back and forth. My complex told us they were going to be fixing balconies, but I had no idea fixing meant demolishing and rebuilding the structure! This is an enormous, loud, messy, and disturbing task. I now feel like I have NO privacy or peace anywhere in my life. I hate to say it, but I was thrilled to come back to the PICU tonight, because the noise in the PICU is a blessing in comparison to the sound outside my balcony door! Sometimes I wonder what kind of curse we are living under!
When I arrived home, Margaret and Mattie were sitting on the couch together and watching the demolition. Margaret then helped me clean up the toys, the fort, and the kitchen. So that I did not need to deal with this myself. Thank you Margaret for watching Mattie for so long, and doing a great job entertaining the boys. While we were cleaning, Mattie was super quiet, and listless on the couch. Never a good sign for Mattie, so I instantly felt him. He felt hot to the touch, so I grabbed the thermometer. Sure enough he had a fever. It was low grade at home. I proceeded to call Dr. Synder, who wanted Mattie to come in. When Mattie heard that he had to go back to the hospital, he became hysterical! He refused to let me take his temperature by mouth, the best I could do was under the arm, and he was crying and clung to me. I was able to calm him down, and then Margaret sat with him, while I raced around putting our hospital bags together. I really appreciated Margaret's help and support. Fortunately I never really unpack our hospital things, so that I can turn around in a moment's notice. I also called Peter, and he raced home from work to help me transport Mattie. Mattie was so upset about going back to the hospital, that it really took both of us to take him. Peter drove, and I sat next to Mattie in the back seat. It was just heartbreaking to have to take Mattie back and to know that Easter is approaching and we will be in the hospital. Even in Mattie's sick state today, he did not want Margaret to leave. He wanted to bake cupcakes with her, but of course, he had no energy what so ever to do this. None the less, I was happy he connected with Margaret while I was gone.
We want to thank JP, our neighbor, for bringing Mattie a pizza today and we also want to thank the Dunn family for a very generous and tasty dinner. We thank you especially for the fresh fruit, the beautiful rose plant, and the wine.
Specifics on Mattie. Mattie is neutropenic, meaning that his white blood cell count is very low and makes him susceptible to illness. Mattie's absolute neutrophil count (The real number of white blood cells that are neutrophils. Neutrophils are key components in the system of defense against infection.) tonight is 158, and his count was 1400 on Monday. So that is a major drop. In addition, Mattie has terrible stomach pains, which most likely are caused by mucositis, which is the painful inflammation and ulceration of the mucous membranes lining the digestive tract, usually as an adverse effect of chemotherapy. In addition, Mattie's hemoglobin level fell today. So at the moment, Mattie is on two different antibiotics to fight the fever and infections, he is getting a blood transfusion (which runs for four hours, and they are checking Mattie's blood pressure and temperature EVERY 15 minutes), and Mattie is being given morphine every four hours to combat the mucositis pain. So I would say this last round of chemo hit Mattie hard. But this has been a true statement each time Mattie has had infusions of ifosfamide and/or etoposide. I have tracked Mattie's neutropenic admissions, and recently he has developed neutropenic fevers on a Wednesday after being discharged from the hospital on a Saturday. So my gut said he was going to be sick today, and I am saddened to see that I was right.
When we got to the PICU tonight, the HEM/ONC nurses couldn't do enough to help us. In fact, we were initially assigned a room without a shower, and the nurses and staff helped us get a lovely room instead. In addition, Laura and Meg (Linda's interns) came by to spend time helping us, and everyone signed Mattie's cast! In addition, Dr. Synder (Mattie's doctor) came up to see us and checked in with us and Mattie. So I felt like everyone was trying their hardest to make a difficult situation more bearable.
I end tonight's blog with a message from my friend, Charlie. Charlie wrote, "What an awful day. Tanja, thank you so much for stepping up and helping; it is pretty clear that the day could have been much worse were it not for your "bag of tricks". I was not expecting this sort of reaction from Mattie; it seems as though being on his stomach made him experience a level of vulnerability that was just more than he could deal with. It must have taken great courage for him to put himself back on his tummy again. However, once the fear and anxiety started I think he could not find his way back to his emotional "center" as that point is pretty fragile and easy to disrupt. I think that might be why you saw the continuing emotional swings today-much of that was an attempt to regain control of his environment since he could not regain emotion and physical control of himself. It may also be that somewhere inside Mattie sees the cast as a "step backwards" from the progress he has made in learning to walk. All of this is very anxiety provoking and frightening I am sure. I know most adults would not find it so easy to handle either."
No comments:
Post a Comment