Tuesday, April 14, 2009

Tuesday, April 14, 2009

Quotes of the day:

"Mother's love is the fuel that enables a normal human being to do the impossible." ~ Marion C. Garretty, quoted in A Little Spoonful of Chicken Soup for the Mother's Soul

"The mother's heart is the child's school-room." ~ Henry Ward Beecher

Mattie had a hard time falling asleep on Monday night. By 12:30am, I had it! I couldn't play one more minute. I finally shut off the lights, and massaged his head, and he eventually fell asleep! Mattie's nurse came in this morning to let me know that Mattie did not need a blood transfusion because his hemoglobin level jumped up considerably from yesterady. She also let us know that Mattie's Absolute Neutrophil Count dropped a bit today and therefore we wouldn't be released from the hospital. However, Dr. Synder (Mattie's doctor) found this data very suspect, and had Mattie's nurse draw more blood to confirm today's findings. About a hour or so later, Dr. Synder walked in Mattie's room and announced we would be discharged after Mattie received a transfusion. Funny how life can change in 60 minutes. Makes you wonder why two blood tests revealed such different results! But I wasn't about to question this, since it panned out in Mattie's favor. Mattie's Absolute Neutrophil Count was 350 today, a jump from yesterday's count of 160.

Despite going to bed late, Mattie woke up as soon as Meg came to visit him this morning. Meg (one of Linda's interns) went home for the Easter weekend, and did not return to work until today. Mattie missed Meg on Monday a great deal! He was in a funk the WHOLE day, and Meg is very good at perking Mattie up. This provides a challenge to me for many reasons because Meg's last day of her internship is THIS Friday! I have started to talk with Mattie about Meg's departure. At first Mattie wanted to know why Meg did not want to stay. After all he said, "doesn't she like playing with me?" The beauty of being 7, and the world seems to revolve around you. However, I explained to Mattie that Meg's school requirement finished up and she was returning home to look for a job. He got it, but he wanted Meg to know that she did not need to search for a job, because he would give her one. It was very cute, and I am so happy Mattie can connect with his fine ladies at Georgetown.

When Meg visited this morning, Mattie told us he was hungry. But he did not want his usual breakfast. I went through a list of his morning breakfast choices, but he did not want any of the things I presented. I then figured if Meg was there, I could go down to the lobby and purchase Mattie a breakfast pastry if he wanted it. He jumped at this opportunity. I went down and came back with a beautiful apple stuffed croissant. Mattie literally ate half of it, and then unfortunately spilled the other half on the floor as he was showing off to Dr. Synder, who came to visit and examine him!

Meg spent several hours with Mattie today. She brought him back a lovely Easter present from Georgia. A hand sized rubber cockroach! What every bug lover must have. It was impressive, I will have to take a picture of this new addition! It creeps me out, but it gives Mattie great pleasure! Meg spent the first part of the morning building a large Lego pirate ship with Mattie. Meg also participated in Mattie's physical therapy session today with Anna. Mattie wasn't allowed out of his room because he had to receive a four hour long red blood cell transfusion. When Mattie receives a transfusion, his blood pressure and temperature are taken every 15 minutes, which makes leaving the room impossible. So Anna's physical therapy session was concentrated in Mattie's room. At first Mattie did not want to do PT, but as he told me tonight in the car, Anna was very persuasive. So he got out of bed and did it! Anna tells me that Mattie did a great job.

Ironically, while we were driving home from the hospital tonight, Mattie said that it isn't easy walking with a cast. We explained to him why he has to force himself to start exercising and walking. We told him we want to celebrate the end of the wheelchair. Mattie understood that, but then said to me that he will always need the walker. It dawned on me that apparently I haven't made this clear enough for Mattie. He knows that the wheelchair is temporary, but he is under the impression that he will never walk like he used to, and will always need a device to help him walk. So I immediately corrected his faulty thinking, but in doing so, I wanted to inspire him to understand that he has the control over getting the wheelchair and walker out of his life. Which is why I told him when Anna or I encourage him to physically do something he should do it! I could see the wheels turning in his head, but it simply confirms to me how challenging it is for a child to understand the concept of a temporary disability.

While Mattie was working with Meg and Anna, I had a delightful visit from Junko. Junko is a SSSAS mom and friend, and our boys became friends with each other in camp during the summer prior to kindergarten. Junko works full time, but she took today off of work to be with me and assist me at the hospital. Not only did Junko bring me a wonderful shrimp salad for lunch and a fabulous dessert, but she made Mattie three different kinds of pasta! Mattie put in his request for pasta last night, and Junko rose to the occasion. She also brought Mattie watermelon, which he ate a whole bunch of tonight! Junko thank you for the beautiful and special socks, all the heating pads that we use while we are in the hospital, and for the wonderful gifts you gave Mattie. The trick nickel is a keeper! If Junko's presence, lunch, and gifts weren't enough, she gave me a wonderful neck and shoulder massage. While she did this, we had a wonderful time chatting, catching up on life, and learning more about each other. It was a very special time. After the day I had yesterday, today was a special gift. In fact, Debbi (Mattie's sedation nurse angel) came into the parent lounge several times, and was so pleased to see someone taking care of me. Debbi acknowledged Junko several times. What do you say about a friend who takes the day off of work, and then spoils you with a massage? Thank you doesn't seem sufficient enough!

While Junko and I were in the parent lounge, I was observing a dad on the phone and oblivious to his three year old son. In fact, his son left the room and was down the hallway and most likely fell. The little boy was crying. The boy was escorted back to the parent lounge by two hospital staff members who were trying to track down this child's parents. When they found his dad, they explained why it was important for the dad to keep an eye on his son. Throughout this whole conversation with the hospital staff, the father never got off the phone. While the son was crying and looking for a hug, the father kept on talking and never skipped a beat. True I have no idea what this dad was going through, or what brought him to the hospital in the first place. However, what I could observe was a child in desperate need of love and attention. I caught myself shaking my head at the whole situation, which was judgemental on my part, but all I could think of was this dad had a healthy and lively child right by his side and instead of following his son's cues, he was ignoring them. Sure the phone call may have been important, but what does it take to hug your child and acknowledge his fear or pain for a half of a second? I don't know, but what I have learned from Mattie's illness is you never get a second chance to connect with your child and through this connection you have the opportunity to build trust, security, and respect.

I also had the opportunity to see Robbie today. Robbie is a friend of Brandon's (Mattie's hospital big buddy) and is now volunteering in the PICU. Robbie is becoming a good pal of Mattie's. Robbie is another fine fellow, and I am so happy that Mattie has these wonderful male role models at the hospital.

Linda came to find me in the parent lounge today because Mattie wanted me back in the room. Mattie wanted help going to the bathroom, but I think the bigger issue was he was tired. He eventually fell asleep on my lap! Once he was calm enough, I placed him on his bed to take a nap. Meanwhile, Junko helped me finish up packing up the room. We accumulated a lot of things from Easter! Junko's help was invaluable. When Peter arrived from work, Junko literally helped Peter take everything to the car, while I stayed with Mattie. It made it so much easier for both of us, but it made for a very long day for Junko. Mind you this was Junko's day off from work, yet she spent it in the hospital and assisted us in every way possible. For that I am forever grateful!

When we arrived home, I had a TON to unpack! We want to thank the Bower family for a wonderful dinner tonight! Mattie loved the pizza, and I of course loved the cheesecake! Peter and I have been on the phone tonight with Dr. Abu-Ghosh, because Mattie's IV hydration was never delivered today. Mattie needs IV hydration for two reasons. The first is he refuses to drink enough of anything, and he easily becomes dehydrated. The second reason is that the chemo has left Mattie's electrolytes totally imbalanced. This certainly could be managed by oral supplements, but we know how non-compliant Mattie is with oral medication. So the easiest way to manage these issues is through IV hydration. It is EASIER for Mattie, but MUCH harder for Peter and I. Why? Because one of us must always be with Mattie at night. Mattie is up every couple of hours going to the bathroom, and needs great assistance with this especially when hooked up to an IV pole! Also every time you access Mattie's central line, you must be very careful to follow a sterile technique, in order to prevent an infection of the line. Oh how I long for the days of sleeping through the night! Without consistent sleep, I assure you, you land up feeling physically and emotionally drained and depressed.

I end tonight's posting with a message from my friend Charlie. Charlie wrote, "Vicki, you have my unceasing admiration for your patience, endurance and strength. Mattie did his best to acknowledge that by telling you that he loves you even when he is at his most difficult. He is so determined to once again be his own person and rebuild his sense of self that even when he knows he should give in, it is almost impossible for him to do so. I thought his tactic of changing "gears" and getting away from the confrontation spoke well of his emotional stability in this stormy time; many adults lack the ability to do what he did. Clearly he has learned this skill from you and Peter and it serves him well. I am sorry it was a difficult day, but I am glad to hear that his numbers continue to improve and I hope you are on your way home as soon as this round of treatment ends."