Quote of the day: "Hope is faith holding out its hand in the dark." ~ George Iles
Mattie had another challenging night on Tuesday. At one point it was around 11pm, Peter decided to take a nap and Mattie was resting. I was working on the computer, and through our room door enters Dr. Chahine, Mattie's lung surgeon. I was surprised to see Dr. Chahine at that hour, especially since he checked on Mattie around 3 to 4 times yesterday. I am very impressed with his follow up with his patients. Dr. Chahine let me know that a chest x-ray would be ordered each day until the chest tubes were removed and it was also to assess that no air was leaking from the lungs. After the doctor left, Peter and I wanted to find out when the x-ray tech was going to show up in Mattie's room. After 11 months in the PICU, we now know the questions to be asking. We know that tests are NOT done at the patient's convenience, but for the convenience of medical doctors. Particularly results need to be ready for the doctors when they round in the morning, which could be at 8 or 9am. So I sent Peter out to ask Brenna, Mattie's nurse, when the x-ray was going to be taken. Peter came back into the room and told me 5am. Of course, that is all I needed to hear. So I picked myself up and went out to talk with Brenna. Brenna is a very capable and competent PICU nurse, and though there are standard procedures followed within the PICU, once I explained my position about the x-ray, she got it immediately. So in essence Mattie received the x-ray at midnight, rather than 5am. Brenna is an amazing PICU nurse, who is both compassionate and a great motivator for Mattie. In fact, before she leaves her 12 hour shift, she always comes into Mattie's room and writes him a positive and upbeat note on his dry erase board. Kind of like a goal and motivator for the day! That attention to detail and connection to her patients speaks volumes to me, and it is greatly appreciated during this time of crisis for us.
After the x-ray, we all tried to go to sleep. However, at 1am, I woke up to an IV beeping. I jumped up and noticed what was beeping was the epidural pump. Not a good sign! So I called in Brenna, and I could see Brenna went into action. I continued to grow concerned, and then remembered that during Mattie's second surgery, the epidural also stopped working because it developed an inclusion from an air bubble. So I told Brenna that when that happened, the filter of the epidural line had to be flushed out. Brenna came back minutes later after consulting with an anesthesiologist, and flushed the epidural filter. Sure enough, that did the trick and it worked beautifully. Brenna and I were thrilled, because if the epidural did indeed stop working, Mattie would have had a difficult night filled with pain. As I mentioned before, things just seem more ominous at night, but with Brenna on the scene, it does alleviate my concerns.
This morning, while Mattie was sleeping Linda came by and brought in a treasure chest filled with Sponge Bob prizes for Mattie. This is an incentive treasure chest. Linda also made an incentive chart featuring Sponge Bob. Every time Mattie does a breathing exercise, he can give Sponge Bob a Krabby Pattie on the chart. When Sponge Bob obtains four Krabby Patties or so, Mattie can pick out a prize from the treasure chest. It is very creative, and certainly meets Mattie's most immediate interest. In addition, Linda also brought us a gift from Meg, one of Linda's former childlife interns. Meg and Mattie were good buddies and they clicked together from the first moment they met each other. Meg wanted to support Mattie through this major surgery, and sent him some amazing gifts. The first gift was the prayer blanket that is featured in this picture. Notice the BUG theme! Meg and her mom made this blanket for Mattie, and her friend embroidered Mattie's name on it and also included a passage from the Bible [Isaiah 40:31 - which but those who HOPE in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint]. In addition to this beautiful blanket, Meg sent several BUG items that Mattie will also enjoy! Along with these lovely gifts, Meg also wrote a beautiful card to us. I wanted to share a few of the sentiments Meg wrote to us. Meg wrote, "I just wanted to write y'all a quick note to tell you thank you for letting me have a small glimpse of your lives and the love that surrounds you all. My experiences at Georgetown are full of beautiful memories and times I got to share with you and your beautiful son! I feel that my internship would have been lacking if I wasn't blessed to play with Mattie. His heart, courage, and strength can only be a reflection of wonderful parents. The three of you have made a huge impression on me and Mattie has touched my heart in a way that I never could have imagined."I have TWO very exciting things to report today. The first is that Dr. Chahine assessed Mattie's chest tube output and chest x-rays and determined just two days after surgery, that Mattie's chest tubes could come out. This caught me off guard, because I was expecting this to happen on Thursday. Dr. Chahine explained that the process to remove the tubes, which meant that Mattie had to be very conscious and alert, so that he could participate in the removal. Participating in this process means that Mattie needs to scream and cry. Why? Because when you are screaming, this forces you to exhale, which in essence compresses the chest cavity, forcing air out through the wind pipe as well as the holes in the chest cavity where the chest tubes are located. So with air being forced out, there is no way air can get into the chest as the tubes are being quickly pulled out. Clearly this is a skill, because if done incorrectly, air can get sucked into the chest cavity during the tube removal process, which could in essence cause the lungs to collapse. Though I remained in Mattie's room during the removal of all drainage tubes that Dr. Bob placed into Mattie, I wasn't as brave today. I decided to remove myself from the room, and Peter stayed with Mattie along with Dr. Synder (Mattie's oncologist). While I was waiting for this procedure to be over, I had the good fortune to talk with Maria, one of the PICU administrative assistants. Maria showed me pictures of her son, and we got to talking about raising children. This conversation caused me to forget my worries for a moment, and by the time we were finished, so was Mattie's procedure. Though I told Maria how grateful I was to chat with her today, she may not fully comprehend that I was nervous and scared, and having someone to chat with made a big difference to me.
Mattie is still on an epidural. The epidural dosage today was increased because Mattie had a night of moaning and pain. Also the goal is to prevent Mattie from being so sedated (from IV pain meds), and instead focus the medication on the site of the pain (which is what the epidural accomplishes). In addition to the epidural, Mattie received a bolus on Morphine through his IV, so that the chest tube procedure could be performed on Mattie with some comfort. Mattie handled the chest tube removal like a champ. He really wasn't screaming, but talked and conveyed his level of discomfort to Dr. Chahine. I was so proud of him.
The second major accomplishment today was that Mattie was transferred, thanks to Anna (Mattie's physical therapist) and Julie (his wonderful PICU nurse today) to a chair. He remained in the chair for little over an hour. While in the chair, Mattie was supposed to perform breathing exercises, but he was just too tired. Understandably due to the major surgery, chest tube removal, and of course the transferring itself. So we were happy with whatever he accomplished today. I snapped some pictures of Mattie in the chair. Congratulations to Mattie, we are ALL proud of him!
Left: Mattie and Peter worked on a Sponge Bob Lego set. Thanks Linda for this great treat in Mattie's treasure box. This is just what he wanted!
Right: Mattie asleep in the chair with a stuffed Sponge Bob.
This afternoon, we were visited by Charlotte's mom, Ellen. We want to thank Ellen for the lovely lunch she brought us. Thanks for chatting with me for about 20 minutes before I was summoned back to Mattie's room. It is ironic, this week Mattie is completely relying on Peter, yet despite this doesn't want me to stray far. I am not sure why Mattie's clear disinterest in me bothers me so much. Rationally I understand it, but none the less I find myself somewhat lost and not sure what my role is, or what to do with myself. In fact, in the midst of this I landed up yelling at Peter because I feel so cut out of the process. This is the first time, because of Mattie's behaviors, that I feel as if Peter and I are unable to work as a team, which isn't a good feeling. I fully admit I am tired, fed up with this disease, and in the midst of dealing with all of these emotions, I am hyper sensitive. Needless to say, Peter and I worked this out.
We would like to deeply thank the Ferris family today from dropping off a surprise gift for Peter and I. Junko, THANK YOU for the heating pads. I really needed them, because I am frozen from head to toe in Mattie's hospital room. The heat is helping tremendously. What can you say about a friend who reads about your problem and immediately takes action to address it? I am grateful. We also can't thank you enough for the special certificates to the Four Season's spa. In the midst of the week we are going through, your generosity and thoughtfulness truly fills our hearts.
We would also like to thank the Kelliher family for the wonderful dinner and support you are giving us this week as Mattie recovers from lung surgery. The fresh strawberries were a special treat!
This evening, Brenna was back to care for Mattie. We have had Brenna three nights in a row. Mattie and Brenna have a good rapport, and Brenna changed Mattie's central line dressing tonight as well as changed the bandages over the openings where his chest tubes were. One of the incisions is still leaking fluid a bit. I had the opportunity to see the holes left in Mattie's chest from these tubes tonight. It is just a daunting and overwhelming sight to see Mattie's body cut up SO much and of course in so much pain.
It is now almost 11pm, Mattie is wide awake and watching a Sponge Bob video that Linda brought Mattie. She knew this would be something that he really wanted to see, and I appreciate Linda checking with me to see if I was okay with this. At this point, if something is going to motivate Mattie to either walk and/or breathe deeply, I strongly consider it!
As we head into Thursday, I know the goal will be to get Mattie out of bed again and get him to do his breathing exercises. There are respiratory therapists who have given us a gadget called an incentive spirometer, in hopes that Mattie will take deep breaths and fill his lungs to capacity. Great in theory, but most likely if it isn't a game, it isn't going to work for Mattie. So we have our work cut out for us. I personally can't believe it is Thursday already. The whole week is a blur, mostly because we haven't left our room, we are monitoring Mattie 24 hours a day, and most likely because we are just incredibly frazzled. The recovery process seems almost as daunting as the surgery!
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "In some ways the first few days post surgery are worse than the day of surgery. When your loved one is in surgery, there is nothing you can do but wait and pray, every thing is in the hands of G-d and the surgeon and you are free to pace when and where you wish. Once in recovery or ICU, you are now tied down and you feel you should be able to DO something even if you can't actually do anything at all. This is both frustrating and exhausting. Although it is difficult, try to let Peter help as much as possible because if Mattie wants his dad, you can take the opportunity to rest. It is better (and safer) if one of you is as rested and coherent as possible. Additionally, Mattie will need you more once he reaches a point where he is less sedated and you will need all the energy you can muster. I love Ashley's description of "holding you in the light" and I will use that today when praying for Mattie's recovery and relief from pain. If anything at all comes through in the confusion that is typical of post operative time, know that you are not alone even at 2 AM; at all times you are held gently in the Lord's hands and in the heart of one or more of his angels both here and in heaven."
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