HAPPY FATHER'S DAY!

Sunday, June 21, 2009 -- To all the wonderful dads who read our blog we wish you a very Happy Father's Day!

Quotes of the day:

" It is a wise father that knows his own child." ~ William Shakespeare

"You know, fathers just have a way of putting everything together." ~ Erika Crosby

"When we choose to be parents, we accept another human being as part of ourselves, and a large part of our emotional selves will stay with that person as long as we live. From that time on, there will be another person on this earth whose orbit around us will affect us as surely as the moon affects the tides, and affect us in some ways more deeply than anyone else can. Our children are extensions of ourselves." ~ Fred Rogers

As many of you know from reading last night's blog, I have been troubled by the way respiratory therapy has been scheduled or lack there of with Mattie. Mattie doesn't respond well to people popping into his room without some time to transition to an activity, especially therapy. So inspite of the fact that I am truly tired, when Sarah Marshall (Mattie's wonderful HEM/ONC nurse) came into our room last night, I asked her how to handle the issue. I wasn't sure who to address my concerns with. Sarah Marshall took it upon herself to talk with the therapists on our behalf, and when one of the therapist's came in to work with Mattie at night, I explained to him my concerns. Again, these therapists are used to working with children in the PICU who are intubated and unconscious. So there is a learning curve for them as well. Working with a conscious and frightened child requires different skills. I am happy to report though, that our message has been absorbed. Today the therapists entered Mattie's room and invited him to select a time to do respiratory therapy. So far it is working like a charm! Though empowering someone usually does!

Mattie had a very difficult time getting to sleep on Saturday night. He complained of having pain, so at midnight Sarah Marshall gave him IV morphine. But in all reality that did nothing for him. Peter and I played a board game with Mattie and then I got into bed with him and read Mattie a story. Nothing was working. So finally I closed the lights in the room, to make it darker, in hopes that this would encourage sleep. I even massaged Mattie's head. I was getting very agitated watching Mattie. He was in bed, but not resting. Just staring at the wall and moving all of his limbs. He seemed so edgy and he couldn't calm down. By 3am, we gave him more pain medication, and then he finally fell asleep. But at this point in time, I felt like I was hit by a truck! At 7am though the activity in the room began, so you can see sleep doesn't happen easily here! In fact an x-ray tech came into the room and saw Mattie was sleeping. Fortunately Nicole, another fabulous HEM/ONC nurse, got a hold of this tech and got him out of the room. You will find it ironic that NO x-ray was even ordered for Mattie today, so who knows why we were fortunate enough to received this visit?!

Dr. Gonzalez (the attending HEM/ONC doctor on the floor) came in to examine Mattie today. She was very intent to wake Mattie up at 11:30am. I guess she feels that Mattie needs to go back on a regular sleep wake cycle, and sleeping passed a certain hour won't accomplish this. I don't know where I am with this philosophy. I understand that point of view, and yet I feel Mattie needs so much rest to recover and for his body to repair itself. I accept the sleep whenever it comes. Dr. Gonzalez wanted Mattie out of bed and outside in the fresh air again today. He fought this at first, but then later complied and we all had a lovely walk together.

Mattie wished Peter a Happy Father's day, and as Peter always says to Mattie, that the only reason he can celebrate this special day is because he has Mattie. It is a very sweet dialogue between them. On our walk today, I took some pictures that I would like to share with you!

Left and Right: Peter and Mattie together in the Georgetown University Hospital Gardens! It has been pouring rain here all week, so seeing the sun today felt like a miracle of some sort!

Left: Mattie spotted a sparrow on our walk. He was the only one who did, and he made us stop and admire the bird. In fact, Mattie's whole illness has caused us to stop and admire the more natural and simplier things in life.

Right: This afternoon, Dr. Chahine stopped by to visit Mattie. Yes on a SUNDAY and on Father's day! I forgot to wish Dr. Chahine a happy father's day (mostly because Mattie was in one of his moods and I was focused upon him), but hopefully if he is reading this, he knows that our intentions were for him to have a great day. In addition to being a great surgeon he is a dedicated dad. Dr. Chahine brought Mattie a Star Wars robot today. He said that his girls picked it out for Mattie. I can't think of a more thoughtful gesture! You can see the robot in the picture, it has a red head!

I am happy to report that Peter got a break tonight. He actually met up with Dr. Bob to see a movie and have dinner together. While Peter was with Bob, Ann and Abigail came to the hospital. Mattie has been so opposed to visitors all week, and it was my hope that Abigail could breathe some life into Mattie's mood. While we were waiting for Abigail to arrive, Nicole tried to shut off Mattie's oxygen supply through the cannulas, in hopes that he would breathe effectively on his own. But after several minutes with the pulse oximeter alarming we could see it was too soon to try this. So Mattie is back on oxygen. Naturally we are unable to go home until Mattie can be weaned off of oxygen. However, in the midst of all of this, Mattie asked me a fascinating question. He wanted to know if being married meant you have to do everything with this person. I guess the question was, do married people ever have different interests or do separate activities? From his perspective, I could see why he would even be asking this question, since Peter and I are rarely apart these days, and NO we don't for the most part do separate activities from each other. I explained to Mattie that even married couples like to do different things, and then gave him the clear example of Peter loving to watch the Red Sox, and well Mattie knows where I am at with this. I could see his head processing this, because he also translated the marriage question down to friendships. He cited an example for me when he was in kindergarten last year. He said his good friend came up to him on the playground and wanted to do a specific activity with him, but he did not want to do it. He is now reflecting on the fact that he most likely hurt her feelings, and was wondering if it was really okay to say no if you really don't want to do something, but your friend does. The conversation centered around being different and wanting different things from your friend. The whole conversation to me was profound because it speaks volumes about our current situation.

After our chat, Mattie literally fell asleep. I think when the oxygen was turned off, Mattie was really struggling for air, and therefore, was simply exhausted from this. However, before he fell asleep, he seemed truly interested in Abigail visiting, so much so that he asked me to leave the door and curtains of the room open, so he could see who was coming in the hallway into his room. Despite his best efforts he couldn't stay awake. When Ann and Abigail visited Mattie was asleep. Ann gave me the opportunity to have dinner outside the room. I basically ate dinner outside, and it was glorious to be in the fresh air. But even in moments when I am sitting still I feel like I am on hyper alert mode. Will this feeling ever end? Not sure.

When I got back to the room, Mattie was still asleep, and I tried to wake him up, and Sarah Marshall (our wonderful night nurse) even changed Mattie's chest tube bandages, and he did not move. But as the time wore on, I could tell Mattie was awake, but just pretended to be asleep. So I motioned to Ann that I thought Mattie was embarrassed. She got it right away and removed herself and Abigail, so I could talk to Mattie privately. As soon as they left the room, he popped up and looked like he was going to cry. He clearly was very upset. Though I know Abigail would accept Mattie any way he looked and acted, I do think that sometimes one's personal assessment is much harder to face than the actual reactions from others. Ann and Abigail respected Mattie's choice to be alone, and left some gifts for him and a Happy Meal! We want to thank Joan Holden (Mattie's Head of School) for the wonderful real bug collection. Mattie, myself, and Sarah Marshall were busy examining these bugs with a magnifying glass and classifying them! Thank you Joan for thinking of Mattie and for the constant support and generosity! I also want to thank those of you who are giving Ann gifts for us to add to Mattie's treasure chest, or incentive box for doing therapy. Your thoughtfulness means a lot.

After Ann and Abigail left, Mattie was in a funk. I went outside the room to get something for Mattie and I ran into Ellen, another amazing HEM/ONC nurse. Ellen said she wanted to give Mattie a big kiss. So when I came back to Mattie's room, I told him that Ellen and Sarah Marshall wanted to give him a kiss. He actually said he was fine with this, so I called them in. Even in his down mood, after being kissed by these beautiful and special nurses, he couldn't help but SMILE! Thank you Ellen and Sarah Marshall, I needed to see that smile tonight.

Left: Sarah Marshall, Mattie, and Ellen!

As we were awaiting Peter's return from his night out, Mattie and I did respiratory therapy together. He did a great job with the therapist, and I can see his breathing is getting stronger! He can do more and more each day. For his good job doing therapy, he was able to pick out something from his treasure box. He picked out a Sponge Bob coloring set, and he and I sat down and colored for a while. Then we moved onto cars and other more aggressive play!

As I am typing this blog, Mattie is eating his happy meal with Peter by his side. His next respiratory session is at 12:30am! I do want to thank Ann for planning a way to get Peter out of the hospital today and for visiting and supporting us tonight! It was funny, after talking with Ann, I came to the conclusion that I long for the days when life was simpler or DULL (well dull in comparion to this emotional rollercoaster we are living). Tonight I find I am so tired, even moving sucks energy from my body that I really don't have in reserve to spend. I joke with Peter all the time, but there is truth in jest, this experience is aging me, and internally I feel much older than my actual age.

I would like to share four messages with you today. The first message is from my friend, Charlie. Charlie wrote, "Saturday sounds like an all around awful day. People marching in and out, no attempt at coordination, appointments or courtesy. This certainly does not sound like an environment one would choose in order to rest and get well. Unfortunately it sounds like you are back to your role as door guard for Mattie if he is to get any rest at all. I am glad that the doctors seem to understand and appreciate the need to make the connection to Mattie even if the technicians do not. I guess you are going to have to "teach" that class in empathy and child development if there is to be any real success with the therapy. I do hope that Sunday is a better day and that you get to have your shower (a long and luxurious one) in peace so that you have a better start to the day."

The second message is from the Transporters' on-line news letter this morning (thanks Charlie for forwarding this to me):
"I love you guys (and gals), I cannot believe the number of e-mails I got in response to Mattie. Wow it blew my mind. Charlie (Iron Lady) Brown, there were a lot of prayers said on the 15th and at other times. Many e-mails even took into account the time differences. Wow. Please pass along to the parents of Mattie that there were a lot of military and civilian personnel who understand and they are pulling for this young person."

The third message is from my mom. My mom wrote, "When it's 4AM and you're not feeling so good and it's dark outside and scary, who are you going to call? You are going to call YOUR BEST FRIEND! That's why Mattie called YOU! It was ONLY a matter of time before he turned to you again because you always ease his fears with your serene and loving presence and that makes him feel safe and secure. That's what good mommies do and you do it BEST!"

In honor of Father's day, I am sharing this message I received today from my dad. My dad wrote, "Many thanks for the kind and most moving sentiments. As parents yourselves you know how precious your child is! So it's the same for me--Vicki, you will always be my very precious child."