Kayla Quote: "While life may not be the party we hoped for, while we are here, we might as well dance." - Andy Rooney
Short Synopsis: Kayla continues to progress with tiny bitty steps. She has been sedated for 8-9-10 days now. Being on the respirator that long can bring problems. Her left lung was having trouble so they did a bronchoscopy (or they "bronched her" as they call it). Her lung had an injury from the surgery. They assured me that this procedure is routine, that many patients get it. The respiratory machine told them that she was not breathing well with this lung. They put down the bronchoscope and drew out fluid and loads of large blood clots. The bottom and middle lobes of her lung responded but the top lobe was the most injured. They assure me that this is something one recovers from.
I am being called constantly to give permission over the phone for these various procedures. Kayla signed a health proxy form for me to make decisions regarding her health when she was incapacitated and could not make them on her own.
Long Story: They keep delaying closing up her chest. Now she has the lung injury. I have to trust that they know what they are doing. They have been miraculous in everything they have done with her so far. I have to believe.
First, they were going to close up her chest on Thursday. They took her into surgery and it lasted several hours but when she came out, they only temporarily closed her chest by the skin. They did not wire her sternum. They implanted a new central venous line into her neck right next to her other one. It had been an entire week on the first line and they get infected and must be removed and replaced. I guess this was the most important thing to do.
Kayla had the same surgeon. This time he did not come to talk to me. I had many questions but it was late and this man needs his rest. He is going to do many more surgeries on my daughter. I am totally amazed by his abilities and grateful that God has put this man here for Kayla.
I went to check up on her in the ICU as she had come back up from the surgery and this is the routine. You have to call in and they give permission if you can come in or not. They like to get everything set up just so, all the stabilization work done, all the clean up, etc...
I found the nurse working on transferring over the tubular lines from the different medicine boxes, one at a time, to the new central line. She was very careful, doing wonderfully and she had a lot of work to do. Once all the lines were over, they would pull the old central line out and that would be that.
Friday and still no closure. Now the surgeons would not return until Monday. They spoke about progressing her forward but her sternum needed to be stapled first. Without this, they could not get her off the respirator. She would remain asleep.
The nurse was happy to report to me that they would now begin feedings through a tube into her stomach. Apparently, nutrition experts can tell from her blood what she needs in her diet - protein, etc.. and what formulation is required. It had been 8 days since she has gotten any nutrition. Fluids are more vital and those are given all along. Now was the time to re-introduce more solid substance but it would be tricky as the sedation medications stop all intestinal activity.
I went home to rest and fret and cry. I attacked people along the way who did not deserve attacking. I needed more sleep and Charlie told me via text "GET SOME SLEEP!" I hope people forgive this distraught mother.
My husband was wonderful. He cuddled me on the lawn as I cried. He was in the middle of re-doing the sidewalk that leads up to Matt's apartment. He is doing a wonderful job and being a perfectionist, well....you can imagine how beautiful this walkway is coming out. I see Matt inspect it as he walks by with his coffee in his hand. But I am not done crying. I curl up into a ball by my flower garden while Mike is inside watching golf, and I cry some more.
My only goals this weekend in my quest to take care of myself were to swim 1/2 mile for my triathlon training and to rake out two flower beds. A half hour later, a doctor calls me for bronchoscopy permission and he calmed me down. It was the nurse who I spoke with before who got me upset. Her demeanor was awful, like something was very wrong. Mothers whose daughters are critically ill are fragile beings and should be treated gingerly. What the heck was the matter with that nurse?
The doctor said he has done "100s of these procedures" - that it was routine. Now why couldn't they communicate that to me before? Up and down the merry-go-round I roll. I calmed down after I spoke to him and went immediately in to tell Michael because I always let him know the good news immediately. He suffers as much as I do. We treasure Michaela more than we treasure ourselves.
I then moved 6 wheel barrels full of leaves from the public island where I have planted many perennials over the years. As I work in this bed, many people stop and say a few words. It's very social. I saw the McMahons and Maeve was in the back seat. She got a liver transplant at the age of 3 months with a piece of her mother's liver. She has done extremely well and is now 17. I was still in my crying jag mode. I yelled at the woman in the car behind as she impatiently honked to get by. No patience for anyone! The McMahons came back within a few minutes after they dropped off their daughter somewhere. Dawn, the mom, said she could not leave me in this state. They were very kind.
I think I need to stay in my house and not see anyone when I am like this. Thank God it's a temporary place for me. After many hours of sleep, I am back in a solid, strong emotional state again.
Kayla will be very upset when she finally does awake and sees that she has lost several weeks of her life, that she has a mechanical device implanted into her when she was expecting to wake up from a simple surgery to remove a mass of cells. This type of thing happened to her before when she was 13 1/2 and had extreme heart failure and a full right-sided stroke. She would not believe the nurse when she was told it was the end of January and she had crashed on December 28, 1998. This nurse was solid and said, "I can tell her" as she went into the room without me. Kayla did not know that I had polished her nails for New Year's Eve in a festive color as she lay there in the induced coma. I knew she would have wanted to celebrate that special night, even though her heart was extremely sick.
This time around when Kayla went into the ICU, I decided to clean up her desk in her bedroom at home. This was something she wanted me to help her with. As she grew sicker over the past few months, she could not concentrate on much of anything, probably due to lack of oxygen to her brain. She knows that I have a special skill for organization and she wanted to see how I would organize all her various things.
I assured her I would not throw anything out, but each time I approached her to organize it, she balked. It was too much for her to do. Now, I look at the papers and things on her desk. One morning I got up and simply attacked it, maybe 5 days ago.
It took me two hours to carefully sift through all these precious things of Kayla's and I loved every minute because I was with her as I was with her things. Kayla writes list after list of plans she has to do and people she has to call. Over time, since she hardly throws anything away, there are many lists lying around. She also draws cartoons. Here is one of her latest "To Do" lists.
TO DO - Saturday
Call Ash - Chill today
Call Janelle
Call Rach F. - Nick's Party - Sunday nite?
Call Brit - Thanks for ring
Call Deirdre
Call Liz Rowe
Call Ad/Missy - text
Call Dr. Gluck
Below this penned listing was a cartoon of a duck with fluffy hair and a comical eye.
Ok, get the picture? Is this girl a social butterfly? If your name is not on this list, don't fret. There are a bazillion other lists - your name is bound to be on a different one. Kayla never leaves anyone out. She lives and breathes people. Without her, my family would not be as glued as they are. Without her, I would not be enjoying my sisters as much as I am.
Each little do-hicky on her desk warmed my heart. Little tiny mementos of so many special things. Bits for craft projects. Photos. Lists. Packages of gum. Ribbons. Balloons. Gizmos....whatever. I began to feel a little sad that I was putting all Kayla's special treasures into filing cabinets, into pencil holders, into paper piles, together with other similar stuff - each paper perfectly on top of the next.
Kayla, you need to get well soon! I want your desk to be messy again. You needn't be embarrassed...it's you. Come on home and make a new mess....please! Your personality left the minute I organized the damn stuff! Now it is sterile...
I need you! I need someone to put on my eye makeup so I don't look like a chipmunk. The black lines are imperfect. I don't know how to use shadows. I need you to tell me if my clothes and accessories are put together properly.
I need someone to yell at me to wash my hands as I leave the washroom....
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