Sunday, August 16, 2009

Sunday, August 16, 2009

Quote of the day: “Love knows no limit to its endurance, no end to its trust, no fading of its hope; it can outlast anything. Love still stands when all else has fallen.” ~ (I Corinthians 13:7-8)

Mattie was up several times on Saturday night, and the IV pump felt like it was beeping every two hours. So needless to say, peaceful sleep did not happen for us, though at this point, Peter and I both could be enrolled in a sleep deprivation study. It seems to me you couldn't ethically ask someone to be this sleep deprived, so from my vantage point we are a sleep researchers dream come true. My sister in law, Lisa, asked me today whether there have been sleep deprivation studies done on caregivers, and how the lack of sleep impacts their physical and mental health. I can't speak to the most current research out there, but from my previous work, there is nothing out there to answer such a question! But I think Lisa is onto something! When we got up this morning, we were on a mission. The mission was to get discharged from the hospital and be trained on how to use the PCA pump to administer IV morphine to Mattie at home.

Kathleen was Mattie's HEM/ONC nurse today. I know many of you may recall that Kathleen designed a clay tile for the art therapy exhibit at the hospital that reads, "I wish for a Mattie miracle." Kathleen loves monkeys and she calls Mattie her "little monkey boy." Recently in the blog you may have seen a picture of Mattie with Kathleen, holding a Curious George balloon. I think Kathleen could see that I was worn out today and wasn't thinking as clearly as I normally do. Kathleen mobilized forces to help Mattie get discharged smoothly and effectively. We did receive the PCA pain pump last night in the hospital, but when Kathleen heard how the morphine was only going to be administered through the pain pump, she grew concerned about the safety of Mattie's central line. Our in home pharmacy set up the pump so that morphine would go through Mattie's central line only once an hour, the rest of the time, the pump would be connected by tubing to his open central line, but no fluid would be flowing through it. Kathleen flagged this as a problem, because if you leave a central line open and unclamped for a period of time, it can clog up and not function. These central lines are vital for Mattie, since he receives all of his medication through them! Kathleen wanted to avoid the development of a clogged central line. So she took it upon herself to call the in home pharmacy company and brain stormed a more effective form of administration. What the pharmacy landed up doing to correct this problem, was to put the IV morphine in a large bag a fluid, so that the pain pump will work continuously 24 hours a day. This will enable two things to happen, 1) the pain medication will be administered at the correct dosage once an hour, and 2) by having a constant flow of fluid through the central line, it will remain open and usable. If fluids are not allowed to flow through the open lines, they will become clogged. If they are clogged they are not usable, which would be a major problem considering all the medications Mattie needs to receive through them. So Kathleen was clearly looking out for Mattie's best interest today and advocated for him with our in home pharmacy! Kathleen also helped me by creating a listing of ALL of Mattie's medications, by dosage, and when they are to be administered. Mattie is taking SO many medications, that Kathleen also listed for me which medications are compatible and can be administered together through the central line. Peter and I can't thank Kathleen enough today. She really helped to take out the additional stress I was having about all these medications, and her medication list is now in my purse and posted in our kitchen. In addition to Kathleen normalizing all of this for us today, she also ran around making sure Mattie was comfortable and pain free while in the hospital. As Peter said, "Kathleen is the epitome of the nursing profession." As a synopsis, here are all the medications Peter and I are balancing right now for Mattie. This list makes my head spin, it is extensive, and complicated. Or maybe it is the fact that I am thoroughly exhausted, and managing one more thing takes super human strength!

1) Vancomycin (a very powerful antibiotic): administered through Mattie's central line, twice a day for the next five days to combat his Staph infection.

2) Kytril (an anti-emetic): administered through Mattie's central line, every 12 hours.

3) Zofran (an anti-emetic): administered through Mattie's central line, every 8 hours.

4) TPN (nutrients): administered through Mattie's central line and runs 16 hours a day!

5) Valium (for anxiety): administered through Mattie's central line, every two hours. It isn't compatible with IV morphine, so it makes the administration process a little more cumbersome.
6) PCA pump (IV morphine): connected to Mattie's central line 24 hours a day!

7) Celexa (for depression): taken orally once a day

8) A laxative (because morphine produces constipation): once a day.

9) Fentanyl Transdermal Patch (for pain): changed every 72 hours.

What I want to impress upon you is a couple of things. First, Mattie is now hooked up to an IV 24 hours a day! This is a major adjustment for him and for us. At some points in the day, he is hooked up to two IVs at once (for TPN and for pain). Tonight Mattie got upset with the fact that he couldn't move around on the floor, without having to drag the backpacks filled with medicine. I am waiting for him to ask about these bags, but for now, he seems to accept them, mainly because one of them helps manage his pain. But I know more questions will arise soon! Second, and I know you know this, but Peter and I are wiped out. Being in this state of exhaustion, it is very hard to manage all this medication, because every medication has a specific time during the day when it must be administered.

This afternoon, while in the hospital, Mattie was visited by his Aunt Lisa, Uncle Chris (Peter's brother), and his cousins, Nat, Sydney, and Will. Mattie had a good time with them, and Mattie particularly liked the gifts they gave him. One was a car that he could take apart and put back together, and the other item he really liked was a three dimensional wooden helicopter puzzle. In fact, everyone worked on this helicopter today, and it was a good activity for Mattie, and helped him stay engaged with his cousins. I was fortunate that Nat and Sydney took some pictures for me today on my camera. I was just so tired, but I am happy they captured the afternoon.

Left: Mattie with his cousins. From left to right is Will, Nat, Mattie, and Sydney.

Right: Mattie with his Aunt Lisa.

Left: Mattie animated as he plays with the car that has removable pieces.

Right: The finished product! The kids, Chris, and Peter all worked on this puzzle!

Left: Mattie with Uncle Chris. When Mattie was going through chemo this year, he always said he looked like his Uncle Chris. But now that Mattie is growing his hair back, we did a side to side comparison today to see who now has more hair! You be the judge!

Mattie was discharged from the hospital after 4pm. When we got home, Mattie immediately wanted to ride Speedy Red! So I hopped on with him and even in today's amazing heat, we were zooming around. I am happy Peter captured this moment for us.

However, as the evening wore on, Mattie's anxiety level increased. In fact, he sat by my side on the couch and wouldn't let me go. It is also hard to eat around Mattie because the smell of food makes him nauseous, and yet he wouldn't allow me up to move away from him to eat. The other aspect of this which makes things impossible is that Mattie wants to eat. He says he feels hungry, but he just can't eat. He lands up crying about this and is SO upset. The intense crying, hearing your child in pain, and keeping up this pace are tortures beyond belief. Tonight Mattie was highly edgy, confrontational, and broke down into tears immediately. Needless to say this wears heavily on Peter and I. Our emotions are frayed and we don't have much more to give. Some days I ask myself, how can I go on? How can I wake up and deal with another day like this? Of course, the alternative is I have no caregiving responsibilities left because Mattie is dead. So neither scenario right now is acceptable. If exhaustion doesn't completely deplete me, then seeing Mattie suffer in pain with each passing day certainly will.

As we head into Monday, Mattie goes back to clinic for a blood test. However, he was supposed to have a physical therapy session in the afternoon, and I cancelled it. None of us are in any state for this. Perhaps will we go back to this on Tuesday. I could cancel PT altogether, but I want Mattie to feel like he is working toward something, as long as he has the physical strength to do this. Peter's mom came into town tonight, and will be with us for two days. So it is my hope that an extra pair of hands will help lighten the load. But I am also aware of the fact that Mattie is scared and clingy now, so I know our presence is crucial to stabilize his mood. We have needed your thoughts and prayers all year long, but it seems to me we need them now more than ever before. Seeing your child dying before your eyes takes a level of courage, love, and strength that is almost indescribable.

I end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I am so sorry you had to go back the hospital on Saturday but you clearly made the right decision. I loved your comment that "Saturday was not the day we hoped for", what an understatement that is. It must have been frustrating, frightening, anxiety provoking and infuriating all rolled into one that you were unable to get the medication and relief for Mattie. I am grateful that it seems Mattie had a good, peaceful night on Saturday (and hopefully you did as well) in the hospital and that they were able to deal with his medical issues promptly. I am praying that you can solve the situation with Mattie's pain, anxiety and nausea so that you can return home for some family time. I will continue to pray and I am still getting emails from both the Dept of Defense transporters and the Lafayette Alumni group that they are praying daily for Mattie and for your family."

The second message is from a fellow RCC mom. Kathy wrote, "I've been reading your blog daily and have wanted to write for a very long time. I'm not very good at expressing myself so I put it off until now. I know that you've received many emails of late-words of encouragement from people who love and care about you all. We all feel so lost and don't know what to do with ourselves. We hope that your pain will be eased a little by some kind words -and by writing, it helps us to cope too. A few weeks ago I was working with a new , inexperienced nurse. She was crying because her critically ill patient was more than likely going to pass away on our shift. Being in charge on our floor, I spoke with her and gave her a big hug. I told her (as an old experienced nurse)that usually when our patients die, its their time. We've done everything that we can...all we can do now is make them comfortable and support them and their families as much as possible. Now this past week I read your news and realize that its easy for me to feel the way I feel about adults who have lived their lives-who are elderly or maybe have made poor choices. Its hard to say that we've done everything that we can for a sweet little seven year old boy. I'm around death and dying all the time. Sometimes I feel as if I've come to terms with it all...other times I wonder if I have a hardened ,unfeeling heart. Why am I so excepting of it? I know that its a whole different ball game when it involves people that you care about. It just doesn't seem right or fair. People often wonder how I can do the job that I do...it must be so hard. Hard is what you're doing every minute of every day. My job is a daily reminder to cherish the ones you love. I tell (and show) my husband and kids that I love them all the time. Your blog, your life- is a daily reminder too. I thought of you and Mattie the other day when I was holding Seamus' hand. You had recently wrote about how you and Mattie had held hands and how much it meant to you. Know that you are touching so many people. I pray that you get Mattie's pain under control soon and that you can get him back home asap. There is nothing worse that watching people suffer. You feel so helpless. I can't imagine it being your child. You guys are awesome parents...and have done an outstanding job advocating for Mattie and meeting all of his needs. I pray that Mattie is pain free soon and that you will have enjoyable, peaceful days ahead. God Bless you all Vicki."