Thursday, June 18, 2009

Thursday, June 18, 2009

Quotes of the day: "In the stillness of the quiet, if we listen, we can hear the whisper of the heart giving strength to weakness, courage to fear and hope to despair." ~ Howard Thurman

"Health is the greatest gift, contentment the greatest wealth, faithfulness the best relationship." ~ Buddha

I had a hard time falling asleep on Wednesday night. It fact I was up past 2am. Some of you may recall that Mattie's epidural stopped working on Tuesday night at 1am, and Brenna (our great PICU nurse) flushed the system and it started working again. Well last night at 1:30am, the same thing happened. Brenna had to flush the epidural filter out again. Every time this happens, this makes me nervous for two reasons. One I am afraid that when the epidural stops working that we may not get it to work again and second, each time the system is opened and the filter is cleaned out, it exposes the line to a chance of infection. I hear an epidural infection can be nasty. Lovely! None the less, Brenna solved the problem two nights in a row, got the epidural to work again, and then trained Mattie's day nurse how to handle this problem if it should arise. Fortunately she did this, since at 1pm today, Julie (Mattie's wonderful PICU nurse) had to flush the filter again because the epidural stopped working a third time. This time Julie called the pain management team and had them come up and replace the filter with a new one.

When I woke up early this morning, the room was dark, but I noticed something on Mattie's room table. So in my stupor, I went over to look at it. What was it? Well Brenna created her own breathing exercise for Mattie. She knows that Mattie is interested in Sponge Bob, so she used a hospital basin, filled it with water, created a racing finish line, and placed a cut out of Sponge Bob and Patrick in a boat made out of a hospital plastic cup. The goal was to get Mattie to blow through a straw and push the characters sitting in a plastic boat to the finish line. Not only was this a creative idea, but I thought it was very special that his nurse would take the time to design something that would benefit Mattie. This tells me a lot about Brenna and her commitment to her patients. Needless to say, Brenna's Sponge Bob Lake breathing exercise was a major hit today.

Dr. Synder, Mattie's oncologist, visited us this morning. She spoke with Mattie about the importance of him doing his breathing exercises. In fact, she wasn't going to leave the room until she observed Mattie doing something to benefit his breathing. At the moment, Mattie is required to do exercises on the hour, because his lung capacity is diminishing. Not unusual considering his surgery and the fact that he is sedentary. None the less, we do not want Mattie to develop pneumonia, and therefore it is important he work with us to gain his breathing strength. Mattie agreed to try Brenna's exercise. I gave Mattie a straw and he started to blow Sponge Bob across the water to the finish line, however, I also gave Peter a straw, because Mattie loves competition. Naturally we were all cheering Mattie on, and Peter was doing a GREAT job losing. Mattie did this game multiple times, he just loved it and it was very good for his lungs. I can't thank Brenna enough for her determination to get Mattie to participate in his recovery.

I want to update you about two things tonight. The first is that Mattie is being transitioned from IV and epidural pain medications to oral and transdermal pain management tonight. When I met with pain management today they said they were going to just shut off the epidural tomorrow. This concerned me greatly, because with the epidural, I am uncertain the level of Mattie's true pain. If you cut the medication off completely this could cause Mattie to have massive pain. I remember that Dr. Bob tapered off the epidural slowly during his Fall surgeries, and I reminded the team about this today. Many disagreed with this approach, but when I spoke to Dr. Chahine about this, he also concurred with Dr. Bob's approach. Thankfully! So tonight, Mattie's epidural is being tapered off 1mg at a time every two hours. So by tomorrow morning, it will be completely shut off. With the dialing down of pain medication this afternoon, Mattie was becoming highly anxious and agitated. Fortunately tonight they started Mattie on oral pain medication and a transdermal pain patch, so he is very comfortable at the moment.

The second thing I want to update you about is that most likely after Mattie recovers he will be given more chemotherapy. I am uncertain of the amount, but because we know that Mattie's lung lesions were growing in size, and the tumors were viable, it does make sense to add more chemotherapy post surgery in an attempt to wipe out any stray cancer cells that were dislodged during the sternotomy. So being consistent with this whole journey, there is no end or break in sight for us.

I had the pleasure (and I am being VERY sarcastic) today to meet two respiratory therapists on the floor who came in to work with Mattie. The first one came into our room when Mattie was sleeping and the lights were off. She entered the room, talked to me at a normal speaking volume and proceeded to put on gloves. Before she even got the second glove on, I told her that she had to be kidding if she thought she was going to wake Mattie up at that time to do breathing exercises. I think I caught her off guard, and minutes later she came in with her partner. But for me, NO means no. So I gave both of them their walking papers and then reported them to Mattie's nurse and the PICU doctor in charge. You have to wonder where the compassion is? They can see Mattie is frail, cut up all over the place, and connected to every tube possible, and instead of understanding the situation and trying to come up with fun ways to engage him, they did the exact opposite. I am an adult, and if I were in Mattie's situation, they would have completely turned me off too. These are people who should not be working with children. However, this evening a lovely respiratory therapist came in and wanted to work with Mattie, but at the moment Mattie is sleeping.

At lunch time today, Alison came to visit us. Poor Alison got to the hospital and was parking just when I called her and told her Mattie needed yogurt. So Alison pulled back out of the hospital and went to the grocery store. When Alison did arrive, she had a HUGE surprise for Mattie. A wonderful Sponge Bob balloon and of course his yogurts. Thanks Alison for a lovely lunch, for the chocolate supply, and for the walk outside. This was my first time outside since Sunday! However, one thing is very clear this week, is that Mattie is NOT open to visitors. We are back to where we were in the Fall. It is a hard thing to accept to see your child being so mean and snappy at others, but then I try to put his feelings into context and imagine how I would be feeling if I were in his shoes. Thanks Alison for visiting and supporting us today!

Later in the afternoon we had a knock on our door, and a surprise visit from our former neighbor, who now lives in NYC. Goli is back in town for the weekend and wanted to visit with Mattie. She brought Mattie some wonderful paints and paper. I have no doubt that visiting Mattie as he is recovering from surgery is difficult. Mattie doesn't even acknowledge visitors in the room, and seems disturbed by their presence. So I felt bad for Goli today, because I am sure she left with the feeling that Mattie neither likes her or remembers her anymore. Of course that isn't true, but I felt badly for Goli as she left our room. It is moments like this where I know things in our life are so complicated. We live a very different life from most of our readers who visit our blog. We live a world of isolation, where a hospital is our second home, surrounded by medications, wheelchairs, and other reminders that NOTHING is normal for us anymore. Frankly I am not sure we will ever be the same, our world and lens have been completely shattered and at this point I can't imagine ever feeling well again.

This evening I took a picture of Mattie surrounded by his Sponge Bob items. Featured in the picture is Alison's Sponge Bob balloon, as well as the stuffed Sponge Bob doll on the bed and video of Sponge Bob that Linda gave Mattie. So I have gone from disliking Sponge Bob to being surrounded by him. Talk about desensitization!

We want to thank the Hurley family tonight for a lovely dinner, so beautifully presented. We also appreciate the watermelon and cookies. Your note brought a smile to our faces especially since it was on Mattie's Mr. Sun note cards! Thanks for supporting Mattie!

Mattie slept a couple of hours this evening, but by 9pm he was up. Mostly because an x-ray tech came in to take a chest film of Mattie. The x-ray tech gave us a hard time because Mattie wasn't wearing his ID bracelet. She refused to take the x-ray in fact. Mattie never wears his bracelet, but it is taped to his bed, and we were there to verify that he was Mattie. But she did not care. Thankfully Sarah Marshall (one of our fantastic HEM/ONC nurses)was there to help us and she got Toby (the PICU nurse manager) involved to help us mediate this interaction with the x-ray tech. After the daily x-ray, Mattie was visited by Mike, a respiratory therapist. Mike also had a sternotomy a couple of months ago, so he and Mattie had a lot in common. Mattie did several great breathing exercises (he started with Brenna's Lake invention, I think that would have made her very happy!) tonight and then earned himself a trip through the treasure chest of toys that Linda created for Mattie. As I type this blog, Mattie and Peter are busy building a (WHAT ELSE?) Sponge Bob lego!

I have found that Mattie has continued to shut me out of his world today. In fact, when Alison visited, he threw Alison and I out of the room. I completely understand he isn't feeling well and wants this time with Peter (he feels that Peter "protects" him), but that doesn't give him the right to treat me like he has. So Peter and I both spoke to Mattie about this tonight, and as the evening wore on, he tried to open up and include me in his play and other activities. None the less, I am worn out and his attitude, anxieties, and other reactions at this point are so much more than I can bear and handle. It is amazing how everything seems 100% harder when you are so sleep deprived.

As we head into Friday, it should be an interesting day. A day without an epidural and IV pain meds. Keep us in your thoughts and prayers! I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Getting Mattie well will be a process with some forward and some backward steps. I think he's doing amazingly well considering what he is going through. He is fortunate to have a mom who pays such close attention to details or the situation with his epidural pain relief really could have turned into a crisis. Fortunately you were attentive to what is going on. Additionally getting the time of the chest x-ray shifted to a more reasonable one so that you and Mattie did not have to be disturbed really early in the morning was a good move as well. Not many parents are as assertive as you are in making sure that things are done to benefit the patient and not the hospital schedule wherever possible. I hear that you are hurt by Mattie's preference of Peter right now but we all know from the past 11 months of the blog and seeing you together that Mattie is very attached to you and he loves you deeply. It is hard to know what goes through the mind of a child particularly when the child can't communicate very well due to illness so I am not sure how helpful speculation is, but, Peter normally is only around full time in the most serious parts of the treatment. Perhaps Mattie senses this and feels if Peter is at the hospital, then Peter is supposed to be kept really close as his protector at these most vulnerable times. Maybe the answer will come out later in play or not; however, either way, it is clear that his relationship with you continues to be very strong and very critical in his recovery."