Monday, May 18, 2009

Monday, May 18, 2009

Quotes of the day: Charlie sent me these quotes and she said, "These quote are for both Ann's parents and you and Pete!" "Chains do not hold a marriage together. It is threads, hundreds of tiny threads which sew people together through the years." ~ Simone Signoret

"A wedding anniversary is the celebration of love, trust, partnership, tolerance and tenacity. The order varies for any given year. " ~ Paul Sweeney


Oh what a night! I used to think my days were long prior to Mattie getting sick, but now, they are just over the top. I am on the go from the moment Mattie wakes up until he goes to sleep. On Sunday night, I couldn't get Mattie to bed until 3am. The irony is after 1am hits, I too can get a second wind, and then I have a hard time falling asleep. But today I am simply wiped out and can barely keep my eyes open. Naturally when I am in this state nothing goes according to any sort of plan!

Mattie was up and down all night long going to the bathroom, so it was no surprise that he woke up at noon today. When Mattie woke up he was edgy. So edgy and clingy, that I could barely take a shower. He was whining throughout the time I was getting dressed. I can't explain how unnerving it is to try to speed around and pull yourself together when your child is crying, whining, and is shouting out non-stop demands. I am sure to most parents this could easily describe your child on any given day, but when you child is as sick as Mattie, the typical things that you would ignore and try to rationalize away actually become important signs that you do not want to dismiss. Every cry and expression of help becomes a form of communication that should be taken seriously.

Before Mattie was going to head out the door for his bone density scan, I had to flush his central lines, administer him his IV GSCF (a white blood cell growth factor), his anxiety medication, his ulcer medication, and then give him his IV anti-emetic, Kytril. Mattie handled this all well, but later in the day when it was time to get dressed to head to the hospital, Mattie did not want to leave the house or put on clothes. He wanted to stay in his pajamas. During this time, he was also developing the chills. At one point I had a space heater blowing on him and covered him with two blankets. But nothing was helping. He melted down several times and I started to grow concerned, and paged Dr. Synder. She called back right away, and wanted to see Mattie in clinic before his bone density scan.

It was a true feat that I was able to get Mattie into his wheelchair and into the car. However, in addition to Mattie feeling ill, my mother also wasn't feeling well. She could barely walk, and was in intense pain. The drive to the hospital was also enlightening. Mattie began to get dizzy in the car, and at one point wasn't rational. He said he saw the sky on the ground, and the ground in the sky. He saw trees upside down, and then the real kicker was that Mattie saw train tracks in the sky. All very disturbing to hear from the mouth of a seven year old. After observing all of this, I suspected that Mattie has been over medicated between anxiety and depression medications.

When I checked Mattie into clinic, I wheeled him right into a room, so he could rest. Within minutes, Jenny and Jessie arrived to see what was going on, and they had Linda come down to help. So these wonderful ladies came to our rescue yet again today! When Linda arrived, she brought activities for Mattie to participate in, however, by this point Mattie was sleeping. Mattie fell into a deep sleep. Actually a type of sleep that was almost concerning. He was literally non-responsive, and when Dr. Synder came in, we basically tried very hard to wake him up. But Mattie looked drugged out. So between the chills, dizziness, delusions, and the fact that his white blood cell count dropped in half since he was discharged on Saturday, Dr. Synder decided to admit Mattie to the PICU for 24 hours of observation. The condition though was that Mattie would not be allowed to take his depression, anxiety, or pain medication for the rest of the day and night! She wants to see if these medications are altering his state, and that his condition isn't a by-product of the chemotherapy (a scary notion indeed!). In fact, if Mattie doesn't pull out of this mental fog tomorrow, Dr. Synder is ordering a MRI of his brain. I tell you the fun just never ends around here. So though I know in my heart of hearts that Mattie is having a reaction to being over medicated, a part of me can't help but worry once I heard about the potential for a MRI tomorrow.

Linda stayed with me throughout the entire time I was in clinic. She helped me with Mattie, and I had an opportunity to apologize to her. Though I did not mean to do this last week, I was upset during Thursday's physical therapy session and got frustrated with Mattie's constant need for incentives. Some how I feel that Linda got caught up in my frustration, and I felt the need to tell her I was sorry if that indeed happened. As always Linda, handles things with the utmost professionalism. When my mom came into the exam room, Linda and I could tell that she was in pain, and apparently the pain was so intense, she was in tears. Linda walked my mom to the ER, and helped expedite the check in process for her. I am very grateful for Linda's assistance, and I am also very grateful that Jenny also went to the ER and stayed with my mom until she went in for an examination. I am deeply appreciative of Linda and Jenny's help, because there was no way I could be in two places at once. The doctor feels that my mom is having back spasms, which of course are painful, and I have no doubt are exacerbated by stress. My daily life is actually very stressful and intense, and I have no doubt observing these constant stresses upon my family can take its toll out on my parents.

As soon as Mattie was admitted to the PICU, he started to wake up a bit and began to play with Linda. I wish he acted this way in clinic, because this may have prevented us from being admitted. Mattie and Linda spent some time placing glow in the dark stars all over his hospital room. While they were doing this, I had a visit from Dr. Chahine. Dr. Chahine is the doctor scheduled to perform Mattie's lung surgery on June 15. Dr. Chahine heard about our concerns regarding the sternotomy. However, he told me that he and his colleague, Dr. Guzetta (at Children's hospital), still felt this was the best procedure for Mattie. He told me that at the moment the scans show no lesions in the hylem area of the lung (the posterior portion of the lung). He assures me that if there are small lesions in the hylem during the time of surgery then these lesions could be removed through a sternotomy. Only bigger lesions would be impossible to remove from the hylem using this procedure. The thinking though is that if there were bigger lesions, the scan would be picking them up. So in essence Dr. Chahine is pretty confident that the sternotomy is a better procedure for Mattie. He is impressing upon me that recovering from thorocotomies are very long and challenging. Not that a sternotomy is a walk in the park. None the less, I feel like my brain is part of a tennis match. First it settles on a sternotomy, then thorocotomies, and now back to a sternotomy. When will this torture end? I don't know what the right answer is, and I can't wait until Peter talks with the surgeon at the Mayo clinic to find out why he feels Mattie must have bilateral thorocotomies. So all this information only added insult to injury, on my already tired state.

My parents came to visit Mattie briefly after they got out of the ER. However, Mattie was screaming in pain, and calling out for pain medication. It is a very sad and painful thing to observe, and part of me prays I survive the night. Mattie in pain, and no medication to turn to for help. Wow, this is a special torture I wish upon no one. I assure you anxiety is very real, and without proper attention, it can get out of control, and I am already seeing intense fears and agitation from Mattie this evening. Keep me in your thoughts tonight, my brain in filled with Mattie's crying and whining sounds. I feel today that I am operating under a heightened level of stress, and I just came back from pleading Mattie's case with the medical resident! I feel that Mattie and I won't make it tonight without anxiety meds.

When Peter arrived from work, he brought us some of our things to make it through the night. I refuse to unpack anything, since I am assuming we won't be staying here long. Or in other words, I assume we will be discharged before we have to be readmitted for neutropenia.

We want to thank the Ferris family for a wonderful dinner from Founding Farmers. We loved it and I know Mattie will love the two tricks and stretchy insects tomorrow! Thank you for thinking of him, and for your constant support.

I truly wonder how Peter and I function on such little sleep and with no end in sight. At some point you really think something has got to give. Then I think what an incredible punishment Peter and I have to endure. Seeing your child so sick, screaming in pain, body and mind transformed, and the list goes on. Keep us in your prayers.

I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I was really glad to see pictures back on the blog as that told me things were calming down a bit. I am so glad you and Pete and your parents got to go out to the anniversary party. These events are so necessary to keep one in touch with what is important in life. The pictures are wonderful and they reflect the love that this couple so clearly feel for one another. I know that you don't like giving Mattie medications for a number of reasons including side effects, but Mattie seems to be so much more amenable to therapy with the anti anxiety medication that it clearly is a support that he can really use right now. We as adults have ways of dealing with our anxiety that children don't and even so, I have seen many adults whose functioning was clearly impacted by their inability to deal with fear and anxiety. Mattie has limited resources as well as very little control over the situations that make him anxious and if the medication damps that down enough so that you and others can work with him, I can only regard that as a blessing right now. I don't know if Mattie really knows what is yet ahead but I do know that he is very sensitive to your feelings so that even if he doesn't have the specifics, he knows there is something that is worrying you and so he is also worried. There is not much you can do about that except to make the best decisions you can and go forward with faith that you are doing your best for him."