Quote of the day: "Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength." ~ Anonymous
On Wednesday night, Peter went home and I stayed in the hospital with Mattie. Tonight, Peter sent me home, and we will try to periodically rotate so we both don't lose it at the same time. Mattie had a peaceful night of sleep thanks to my new best friend, Morphine! Dr. Abu-Ghosh, Brandon's doctor, has been extremely helpful. She diagnosed mucositis in Mattie several weeks ago, and prescribed him Morphine then (as a note, mucositis heals itself, once the white blood cell counts begin to rise and return to normal). This bout of mucositis is worse, and Dr. Abu-Ghosh is very compassionate and doesn't like to see her patients suffering. So she has helped me find the right balance of Morphine for Mattie. Mattie was getting Morphine every four hours, but today we upped it to every two hours. It is only within the last several months have I gotten the opportunity to really work with Dr. Abu-Ghosh, but I continue to be impressed with her calm, sensitive, compassionate, and competent demeanor. When she came to examine Mattie this morning, she could see he was in pain, and in an instant she changed the Morphine orders and got Mattie's nurse to bring in Morphine before she even examined him. In fact, she waited in the room, while Katie (Mattie's wonderful HEM/ONC nurse) pushed this medicine through Mattie's central line. That alone said a lot to me, since usually doctors are always rushing from one thing to another, but not Dr. Abu-Ghosh. Her level of sensitivity today caught my attention, and she also took it upon herself to find Linda, so that I could get out of the room and have a break.
During the morning, Mattie's doctor, Dr. Synder, also came up to visit me. I had asked Dr. Synder about mistletoe extract and its use with cancer patients who disease has spread to the lung. I had learned about this extract from a fellow osteo mom I have befriended. Clearly Dr. Synder could have researched the information and gave me her synopsis and opinion, but that is not what she did. She did something much better. She printed out research information she found for me through the National Cancer Institute. She suggested that I read it, and then after I came to my own conclusion she would tell me her opinion. How refreshing! A medical doctor taking into account a parent's perspective. Today was a day of wows for me. So while Mattie was sleeping this morning, I read the articles, and then wrote to Dr. Synder. We both came to the same conclusion about the extract, but it was nice to have the opportunity to read and make an educated decision myself, of course guided by the expertise of Mattie's doctor.
Mattie was not himself today. He continued to have a fever throughout the morning, and was in pain. So much so, that he couldn't talk. His mouth was swollen with sores, saliva was dripping from him mouth because he couldn't swallow, and his overall state was that he was upset, uncomfortable, and just wanted to "snuggle" and be held. I spent a great deal of time doing that this morning, and in fact, unless Mattie is truly sick (like he was today), he doesn't stand still long enough to snuggle. In addition, Mattie's room makes resting possible. We have never stayed in room 16 before, but it is double the size of the other rooms, and has a private shower. In addition, it has an anteroom that you have to walk through to get into Mattie's room. So literally there are two doors protecting us from the noise of the hallway and PICU. It is beautiful not to hear ANYTHING! I think this helped Mattie rest today.
At around 1pm, Tanja came to visit and brought Mattie all sorts of fun gifts and a set of bunny ears for Easter. She brought me a wonderful lunch as well. However, to my amazement, Mattie did not give Tanja a warm reception. Mind you he has played with Tanja before, and she even helped us on Tuesday when Mattie had his cast placed on his leg. But that was just it, Mattie associated Tanja with his experience on Tuesday, and he just couldn't deal with it. So Tanja and I went into the parent lounge and had lunch, while Linda did her magic with Mattie. Linda gave Mattie some Wall-E things, and Mattie was recreating Wall-E's house from the movie. Denise, Mattie's social worker, also joined in. Denise also asked for Mattie's signature, since Mattie has made the Georgetown Hospital newspaper. The article is about the ribbon cutting ceremony of the childlife room. Some of you may recall that Mattie cut that ribbon, and his picture is featured in the newspaper!
Tanja and I had a lovely lunch together and it is wonderful to have the opportunity to get to know each other better. It is in the midst of great sadness this year, that I also have developed friendships with some very special women. In many ways, I believe Mattie's illness enabled relationships to blossom and develop which may not have occurred otherwise. Not because of a lack of interest, but because of the sheer quick paced and hectic lives we all lead. Mattie's illness makes us all pause! I appreciated the hot tea and soup today, because I was physically cold in Mattie's room. I lowered the heat because of Mattie's 102 fever, and though I like heat, I knew this wasn't going to be in Mattie's best interest.
After lunch, I went back to Mattie's room and he told me that the cast was bothering his pinkie toe. So I called Dr. Bob. Bob was already headed over to Georgetown Hospital to visit patients, so the timing couldn't have been better. While we were waiting for Bob, a volunteer came in to play with Mattie, one that he typically loves playing with, but not today. Mattie was very upset that Linda left his room, and basically was asking for her the rest of the day. I have tried to explain to Mattie that Linda has other patients and things to address, but it is hard for him to grasp that concept sometimes. I am happy he has a close connection to Linda, and Linda has and continues to do so much for us. Truly if we did not have Linda, I would have lost my mind a long time ago! Instead of playing with the volunteer, Mattie decided he wanted to rest, so we said good-bye to Laurie, and I helped Mattie get comfortable. When Bob arrived, he told me he was going to do the "wedge" procedure to Mattie's cast. Bob originially was going to perform this procedure next Tuesday. But I believe Bob feels Mattie's leg is making such great progress, that he felt it wasn't necessary to wait until next week. Before we proceeded which involved Bob sawing (that sounds worse than what it was) through part of Mattie's cast, Bob talked with Dr. Abu-Ghosh about giving Mattie Versed (an anti-anxiety medication).
Mattie seemed fascinated by the cast saw, until of course it started putting pressure on his knee. Bob literally made a cut in the cast that looked like the size and shape of an orange slice by the front of the knee. Bob also made a cut in the cast on the back of the knee. When he pulled out the orange slice portion of the cast, he then broke off an edge of the slice, and used this edge as a wedge in the back of the knee to further assist in straightening out Mattie's knee. I am not doing this process justice, but by the time Bob was finished Mattie's leg looked pretty straight. Mind you, this was somewhat painful, and Mattie was screaming and crying. But certainly nothing like Tuesday's ordeal. Bob then wrapped up the knee portion and put an additional plaster cast in the knee area. Mattie's biggest complaint tonight is that many of the signatures on the cast have been disturbed. What a wonderful problem to have! The nurses were all over it, and already began to resign the cast! Before Bob began this procedure, I had the opportunity to talk with him about my disappointment over Mattie needing more surgery in June. Mind you I am having this conversation with a surgeon, and surgery is his gift and livelihood. However, while I was talking I felt as if Bob understood what I was saying from his "dad" perspective rather than his surgeon lens. I told Bob how difficult it was to see Mattie cut up, and the fact of the matter is more is in store for him. Bob did mention that Mattie's surgeries in the fall were over the top. Meaning that I think the aggressive type of surgery Bob was willing to perform for Mattie doesn't happen everyday or maybe never. In essence Mattie is the miracle child, and the fact that he has survived three massive limb salvaging surgeries speaks to Mattie's will to live and his intense spirit! Of course Bob's expertise doesn't hurt either.
After Dr. Bob left, Mattie was in a funk. Laura and Meg (Linda's interns) worked very hard to help pull him out of it. He couldn't decide what he wanted to do, and he landed up crying intensely because I apparently moved his Wall-E house that he created with Linda. I have heard my share of crying in the past two days, enough for a life time. But Meg and Laura convinced Mattie to get into his wheelchair and head to the childlife room to pick out a toy. That perked him up! Mattie returned with two wonderful items, a big digger for his sandbox and a wood model kit!
At which point, Peter arrived from work and so did dinner. We want to thank the Nashman family for a wonderfully generous dinner which also included balloons! Mattie is having trouble swallowing, but he worked on some of the Italian bread that came with dinner! Thank you Honey for your support!
I headed home at 7pm, to find that our balcony door was partly open, and stuck. This coincides with the construction they are doing on my balcony. So I had to resolve that problem, and then I had to hop onto a 90 minute professional conference call. Lord only knows where I find the strength to even put two words together when I am so sleep deprived. But I managed.
Before I sign off tonight, I would like to share two e-mails with you, as well as a song that Charlie sent me today. The first e-mail is from my friend Charlie. Charlie wrote, "What a day Wednesday was. It had a rough start with a very fitful night, followed by a fun day for Mattie and clearly ended on a low note with a return to the hospital. I am glad you got out and enjoyed some company during the day since normally a readmission means that you are very limited in your ability to go anywhere. Mattie is clearly having a difficult time with the cast and the change in his physical "presence;" I think he will adjust to the cast but it will take a bit of time for him to do so. Maybe some physical therapy, if he is willing to try, will help him learn to move and manage with the current limitation. Vicki, I truly don't know how you are managing this situation; I realize there is no choice but even so, I have to say your strength amazes me and everyone else who knows what you are going through."
I end tonight with a song that Charlie sent me. The song is entitled, Mountains, by Lonestar. There is a line in the song that says, "God gave us mountains so we could learn how to climb." Well bring on Mt. Everest, because I think this year I am getting a personal lesson in mountain climbing and human endurance!
http://www.youtube.com/watch?v=ZEQYN1DC220
No comments:
Post a Comment