Peter, a.k.a. Spider Man,
From the moment you came swinging into Simon's room on your spidey strings, you touched my mother heart. Thank you for the care you have given Simon, always mixed in with a touch (or more) of humor. You made us both laugh and brightened our evenings. You are the rock star among nurses, getting Simon his meds early enough to allow us both much needed sleep. Who needs super heroes when they've got such an awesome nurse?
Blessings to you,
Cheryl (a.k.a. Simon's mom)
Heath,
Words seem so inadequate. They cannot begin to express the gratitude I feel for the care you have given Simon. We met you for the first time on Simon's most difficult night on the BMT unit. The way you helped Simon through that night with his dignity in tact touched my heart. Your compassion and nursing skills blew me away. You truly have a gift for what you do. I am so thankful that you fell in love with patient care. Your heart for your patients is astounding. You went beyond highly skilled nursing and also brought laughter into this hospital room. I cannot remember a time when Simon laughed as much as he did that night you and Peter came in for pictures. He laughed almost as hard the next day when I showed him the pictures of you, Peter, and Ron in the family lounge. The sound of my child's laughter is music to my soul. Thank you for that gift! You will always be our #1 nurse.
Thank you for touching our lives! (And easing my heart and mind.)
P.S. I still think you should be a BMT nurse all the time!
"The kindest hearts expect no reward and deserve it all the more. You give so much of yourself in the kindness you show and the lives you touch. That's why you deserve a heartfelt 'thank you' and a wish that all the goodness you share comes back to you." (From the thank you card we got for Heath.)
A diary through the thoughts of a mother whose son was diagnosed with a critical illness.
Saturday, July 9, 2011
Our Hospital Home
For what it is worth, room 710, on the bone marrow transplant unit, has become home. Simon was admitted to the hospital on Memorial Day, waaay back in May. Today, Simon is 30 days out from transplant. It also marks our 41st day in our new "home."
The walls are decorated with posters of Star Wars and super heroes, as well as pictures from home. On one wall, is a large map of the USA, soon to be covered with foil stars, marking all the places across this great nation where people are praying for Simon.
Earlier this week, Peter, one of our all time favorite nurses, was all excited for us. Simon is doing well and heading towards discharge. He wrote on Simon's whiteboard, "Let's get started on discharge education." I smiled, grabbed my clothes, walked down the hall, and cried in the shower. (Peter is the one in red. We call him "Spider Man.")
What is wrong with me? After 40+ days in the hospital, you'd think I'd be bolting out the door a.s.a.p! I am anxious to be home, but we are still at least 2 and a half months away from there. When we leave here, "home" will be an apartment mere block away from the hospital.
We will be close enough for our daily trips back to the hospital. Close enough for daily doses of GCSF, granulocyte-colony stimulating factor. (This is needed to boost his white blood count, so he will have minimal protection against infection or illness.) Close enough for near daily platelet transfusions. Close enough for daily checks of his blood counts. And most importantly, we will be close enough to the emergency room for the middle of the night nose bleed that won't stop, or the dreaded fever that will put him right back in the hospital.
Bone marrow kids do not achieve freedom from this place easily. The doctor told us that most of these kids end up back in here at least once. One nurse told me she can't remember a patient who didn't end up back in here. Some kids come back for a few days until a fever goes away. Some end up back here for a month.
For what it is worth, this place is home. Once we leave, it becomes a hospital once more. If we come back, we are back to being in a hospital room. If we are lucky, we would be back on the bmt unit. If the unit is full, we could even end up on a different floor, surrounded by sick kids, without all the protections the bmt unit provides. Barren hospital walls without the comforts that surround us now. If we are going to come back anyways, I'd just as soon stay put.
Then there is the ever changing criteria for being able to leave in the first place. I have heard the magic ANC number of greater than 2500, 3 days in a row, followed by a couple of days without the GCSF. I have also heard the magic number of only greater than 1500 three days in a row. Two days ago, Simon hit above 1500 for the first time. Yesterday was his second day above 1500, but he was down from the day before. I am still waiting for today's numbers.
Either way, it doesn't sound like he has met the criteria for discharge just yet, at least to my untrained way of thinking. Given these circumstances, I'll take the safety of the hospital, thank you very much.
I don't even want to think about Simon's heart. He has been dealing with elevated blood pressures, which we know because his blood pressures are monitored around the clock. It hasn't been a huge issue, but he has been medicated about once a day for the past week. His heart rate was also up yesterday. Simon has the heart rate of an athlete, which means it beats around 50-55 beats per minute. At night, it even drops down into the upper 40s. Yesterday, every time it was checked, it was more in the 100-115 range. Not fast enough for anyone else to worry, but I am wondering why the change.
NEWS FLASH: Today's ANC just in. Trending down. 1700, 1500, 1300. Still waiting for the 3 days in a row of acceptable numbers to hit.
Then we have the fungus. Somewhere in Simon's body, there is a fungus called aspergillus. It has shown up in his blood. Its numbers are increasing. Simon gets to have cat scans, echo cardiograms, intense eye exams, and an MRI of his brain. They are looking for the fungus. So far, no signs of it having set up shop in any particular place. This is a good thing, but with those numbers rising, what does that mean? He is already on some really strong anti-fungal meds.
I am not yet ready to leave the safety of home, and more importantly, Simon's numbers do not indicate that he is either.
Tuesday, July 5, 2011
Ramblings.
This morning's CBC, complete blood count, brought great news. Simon's ANC doubled since yesterday morning. His ANC is now over 1000. (His low was 7.1.) His red blood is up slightly from yesterday, without having a transfusion, and he has held on to the platelets he received yesterday afternoon. Today he will have his day +28 bone marrow biopsy. (Technically, day +28 isn't until Thursday, but who's counting?)
The discharge word was used again today. Today marks our 37th day in the hospital. I should be ecstatic, right? Instead, I am going into full blown panic mode. (FYI: If you do your bawling in the shower, nobody will know.)
Discharge does not mean going home. It means moving into an apartment located 5 minutes from the hospital. Home is still 2.5 months away.
The hospital is a safe place. Simon's blood pressure, temperature, and oxygen levels are monitored throughout the day and night. His complete blood counts and kidney functions are checked daily. His platelets are checked twice a day. Blood transfusions are often given during the night, while we both sleep.
Discharge means the loss of those safety checks. If Simon's temperature spikes in the middle of the night, will I wake up? What about his blood pressure? Will we be making middle of the night trips to the hospital? Transfusions take up to 2 hours, plus the extra monitoring for an hour post transfusion. He has needed platelets every day and a half, and red blood every 2-3 days. What if he needs blood on the week-end? How will I even know?
In the hospital, meals are provided. Simon has no immune system. How will I be able to go to the store to buy food to feed us? I can't leave him alone, but I also can't take him out to where there are people.
Hospital days are really quite lazy. After discharge, will we be spending most of our time over at the hospital anyways? I am the one who does his dressing change on his broviac catheter every day, but the nurses do the flushing and changing of his caps.
Then there are the costs of leaving the hospital. Simon is taking 18-20 pills, twice a day. Mouth care meds are 3 time a day and nose spray is twice a day. I have lost track of how many meds he is still getting through the IV around the clock. Co-pays alone are going to run in the hundreds of dollars a month just for his meds.
The doctor told us that just about every transplant patient ends up back in the hospital at least once following transplant. Our room, for all it is, has become home. We have our things to make us comfortable. It is decorated with posters and pictures from home. When we have to return in an emergency situation, it will be to a strange room, and maybe even unknown nurses. (I shudder at THAT prospect.)
As I look ahead, the one thing guaranteed to bring tears to my eyes is the knowledge that we will be saying good-bye to the amazing people who have touched our lives during this time and entered our hearts.
Eleanor, who works in the cafeteria. She blesses me everyday when I walk through her checkout line. Ana and Dorothy, who have kept Simon's room sparkling. Most of all are the nurses. While some of our experiences with nurses have been a great source of anxiety for me, most of the nurses have been fantastic. Now that our time here is drawing to a close, we are finally getting some of the same nurses.
Tony, who brought in his Spider Man movies for Simon to watch.
Peter, otherwise known as Spider Man, who wears a different super-hero t-shirt every night. He came swinging in on his spider web one night and managed to get everything done, so Simon could be done for the night by 9! He was also Simon's nurse when Simon's ANC took its first real jump in the right direction. He won't be back on the BMT ward until next week. We might not see him again.
And then there is Heath. Heath is a float nurse, so the fact that we even met him is amazing. He earned himself a permanent place in our hearts his first night of working with Simon. It was Simon's roughest night here, and Heath handled him with such care and compassion, and managed to keep Simon's dignity in tact. When he wasn't in Simon's room that night, he was sitting right outside of it, with the monitor facing the window. He noticed the minute Simon's oxygen levels started to slip, and he was in the room getting Simon hooked up on oxygen. As a mom, I knew Simon was in very capable hands.
Heath was back on the floor a couple of nights later, but not as Simon's nurse. He did stop in and check on Simon a couple of times, just to see how he was doing. He wrote down a youtube video he wanted Simon to see. Last week, Simon had Heath for the second, and probably last time. As a float nurse, his duties are going to be more centered in the ER. We won't get to tell him good-bye.
If I don't stop now, I am going to be bawling again, so, yep, full, stinkin' blown panic.
The discharge word was used again today. Today marks our 37th day in the hospital. I should be ecstatic, right? Instead, I am going into full blown panic mode. (FYI: If you do your bawling in the shower, nobody will know.)
Discharge does not mean going home. It means moving into an apartment located 5 minutes from the hospital. Home is still 2.5 months away.
The hospital is a safe place. Simon's blood pressure, temperature, and oxygen levels are monitored throughout the day and night. His complete blood counts and kidney functions are checked daily. His platelets are checked twice a day. Blood transfusions are often given during the night, while we both sleep.
Discharge means the loss of those safety checks. If Simon's temperature spikes in the middle of the night, will I wake up? What about his blood pressure? Will we be making middle of the night trips to the hospital? Transfusions take up to 2 hours, plus the extra monitoring for an hour post transfusion. He has needed platelets every day and a half, and red blood every 2-3 days. What if he needs blood on the week-end? How will I even know?
In the hospital, meals are provided. Simon has no immune system. How will I be able to go to the store to buy food to feed us? I can't leave him alone, but I also can't take him out to where there are people.
Hospital days are really quite lazy. After discharge, will we be spending most of our time over at the hospital anyways? I am the one who does his dressing change on his broviac catheter every day, but the nurses do the flushing and changing of his caps.
Then there are the costs of leaving the hospital. Simon is taking 18-20 pills, twice a day. Mouth care meds are 3 time a day and nose spray is twice a day. I have lost track of how many meds he is still getting through the IV around the clock. Co-pays alone are going to run in the hundreds of dollars a month just for his meds.
The doctor told us that just about every transplant patient ends up back in the hospital at least once following transplant. Our room, for all it is, has become home. We have our things to make us comfortable. It is decorated with posters and pictures from home. When we have to return in an emergency situation, it will be to a strange room, and maybe even unknown nurses. (I shudder at THAT prospect.)
As I look ahead, the one thing guaranteed to bring tears to my eyes is the knowledge that we will be saying good-bye to the amazing people who have touched our lives during this time and entered our hearts.
Eleanor, who works in the cafeteria. She blesses me everyday when I walk through her checkout line. Ana and Dorothy, who have kept Simon's room sparkling. Most of all are the nurses. While some of our experiences with nurses have been a great source of anxiety for me, most of the nurses have been fantastic. Now that our time here is drawing to a close, we are finally getting some of the same nurses.
Tony, who brought in his Spider Man movies for Simon to watch.
Peter, otherwise known as Spider Man, who wears a different super-hero t-shirt every night. He came swinging in on his spider web one night and managed to get everything done, so Simon could be done for the night by 9! He was also Simon's nurse when Simon's ANC took its first real jump in the right direction. He won't be back on the BMT ward until next week. We might not see him again.
And then there is Heath. Heath is a float nurse, so the fact that we even met him is amazing. He earned himself a permanent place in our hearts his first night of working with Simon. It was Simon's roughest night here, and Heath handled him with such care and compassion, and managed to keep Simon's dignity in tact. When he wasn't in Simon's room that night, he was sitting right outside of it, with the monitor facing the window. He noticed the minute Simon's oxygen levels started to slip, and he was in the room getting Simon hooked up on oxygen. As a mom, I knew Simon was in very capable hands.
Heath was back on the floor a couple of nights later, but not as Simon's nurse. He did stop in and check on Simon a couple of times, just to see how he was doing. He wrote down a youtube video he wanted Simon to see. Last week, Simon had Heath for the second, and probably last time. As a float nurse, his duties are going to be more centered in the ER. We won't get to tell him good-bye.
If I don't stop now, I am going to be bawling again, so, yep, full, stinkin' blown panic.
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