Friday September 25th
Last night Alex went for an mri. This was a short scan of his brain to get a quick look at what was just done, his healing progress and to see if there were any new issues. We were scheduled for this exact mri on Wednesday morning. Alex was transfered out of the ICU on Tuesday night / Wednesday morning at 2:00am. This poor kid had the craziest week (schedule-wise). Very little sleep Sunday night, Monday night and Tuesday night. Wednesday night they were prepared to put us through the waiting game anxiety torture again but I begged for a break. They agreed to give us a break Wednesday night and agreed to do the scan on Thursday during the day. Alex then had the ability to sleep through Wednesday night into Thursday morning with the assistance of a sleepy time medication. Thursday during the day they attempted the mri early in the morning. They attempted to do the mri without sedation and Alex didnt cooperate. Alexs lack of cooperation on Thursday cost us
A waiting game for the rest of the day and into the night.
Monday.We were scheduled for Monday morning surgery. Through the early morning blood work was drawn, he was cut off from feeds at Sundays midnight. We were told that we would be in que and therefore anesthesia and surgeons would come with consent forms. Through the night knocks and consent forms were delivered by thier corre- sponding providers. During the night, knocks and the night nurse delivered his medicines, during the night, knocks and the CA (which is the night nurses assistant) would come in and do Alex's vitals and neuro check...The blood pressure, temperature, bright light in the eyes etc. The door would close and almost instantaneously one of the machines would start to beep. The iv machine pushing fluid or iv medication is the machine that beeps the most. It beeps when almost done, when done, or when the line has a kink it it from movement, etc.
As a patient or parent there is no rest. There is no piece, the minute you as a parent sit on the hard plastic cover of the single pull out couch bed and so much as reach for the pillow or hospital blanket, another beep or another knock at the door. I gaze over at the large round clock on the wall and count the time that I have for potential sleep before the first rounds of doctors come in the morning. The first rounds which are neuro surgery rounds come early. The neuro surgery team consistently walks into the room somewhere between 5:45am and 6:00am. They "need to do what they need to do" and waking Alex up and pissing him off at 545am seems to be "what they need to do". So I look at the big round clock and count the hour and one half before nuero surgery bust in the room. At 6:00am Neuro Surgeons come in and followed through with thier normal routine as I antcipated..at least I was ready. Once they were done, I asked if they had a time slot for Alexs procedure. They said Alex was third in line, the first two were short cases so we should be ready to receive the call.
The entire day was a blur. The entire day was A blur of aggrevation for me. I recall that we were told several times that we were waiting on the call to go to surgery but not sure if it could be in one half an hour or not. As an anxious parent I waited. No breakfast, no lunch and then no dinner. Who has?...what parent has the stomach to go to subway and order the spicy italian with cheese, toasted and "run it through the garden with mayo and oil and vinegar" at a time like this? The furthest thing from my mind right now was nutrition. I couldnt get myself to drink coffee at the moment because I know how I get after my 5th cup.
During the day I sit to pray. I am not certain of wether I am praying as a meditation, as a release, as a method to remove myself from the situation, as a request for healing, a request to heal Alex, A request to heal me, his mom, his brother, his grandparents and all that pray for him. I am certain that as quickly as I sit down to pray, meditate or get away from the situation for a bit.... is as quickly as I get interrupted by beeps, dings, knocks, questions, a briefing, my own anxieties or exhaustion. In between it all, I put my hand in my right pocket and grasp and move my Rosary into the palm of my hand. I have enough time and energy to start the Hail Mary but find myself then thumbing through the beads backwards to find the cross with the true, whole hearted intention to start from the begining. With my fingers I find the cross, I start the Apostles Creed and midway draw a blurr, my anxieties hit me even more now because I realize that I can not remember the order of the words within the prayer. I realize why, I know why, "God forgive me, forgive me so that my prayers can be heard. Right now Im trying to focus, I am trying to be strong, trying to pray the right prayer, but I cant remember the words" I reach for my phone and scroll to the picture that I took of the prayer years ago. I find myself reading the prayer about 3 or 4 times. I repeat my reading because by the time I get to the middle of the prayer... my mind wanders and I catch myself. I tell myself that If I am in this prayer, then I need to know exactly what I am saying and exactly what I just read, exactly what I just said. I feel guilty about my mind wandering and I force myself to start again. I dont know why I start again. I dont know if It is truly about me feeling guilty, I dont know if I do it as punishment or if I do it out of respect and expect to give one hundred and ten percent or nothing at all. I finish reading the Apostles Creed from the screen on my phone, I was in it with one hundred and ten percent. I shut off my phone. I can now lean back on the couch, cover my eyes with a rolled up t shirt to mimic darkness, put my hand in my pocket, hold my rosary beads between my thumb and pointer finger and make yet another attempt at saying a few more Hail Marys. True story... we waited...No joke..we waited...we waited some more...we waited forever...we waited all day long...If it were not for the interruptions, the anxieties, the mental and physical exhaustion, one may have been able to pray one hundred rosaries, but I did not, I could not, the anxiety brain fried me. We were finally called for surgery at 330pm for 400pm roll in..
(I wrote about the surgery in a separate blog)
Late Late Late in the night We finally get to see Alex. We get to see him somewhere about 1030pm. The anxiety over night last night was noted, but I truly do not have the ability to express the true intense feeling of that anxiety, the sounds of all the dings and bings that save his life while waking him, annoying him and raising his own anxieties that in turn may end up producing more sounds. It is ironic that it may be a vicious circle. The smell of the place, the sterile stuff has a weird very bad tequila scent, the cold temperatures, the cold lighting and the voices of the professionals. The professionals that walk through the door, do what they need to do and then all say "ok we are done, we will not bother you anymore....try and get some rest!" They have no idea that once they leave, the next team is right behind them. I can note it, but the anxieties and feelings during these moments are so much stronger, so much more overwhelming than I have ability to express. All day long the anxieties peak and drop. The anxiety levels are like a first time rollercoaster ride with the unexpected highs the unexpected drops the crazy assed unexpected turns, etc...the days and nights when things are not going well are truly unexplainable. Several times through out the day I try to close my eyes but not always able to get more than 15 -20 minutes at a time.
Now...here WE were in the ICU again, 1030pm, We are exhausted and he is just now coming off of sedation. Here we are exhausted and this has only just begun. I know where we have been and it has not been fun. Right here, right now, we are tired and have no idea what to expect.
This time we walked into the ICU and it was was different. This time Alex was awake, this time Alexs eyes were moving around the room. Alex was sitting up, there were only 2 nurses in the room and they were calm. The room was cold, the smell was unexplainable. It smelled like some kind of sterilization smell, maybe the bad tequila that i mentioned earlier. The room was small, tight in width. The bed and the nurse occupied the majority of the width. Behind his bed were the emergency movable towers that contain dozens of power switches, several oxygen hookups, several vacuum hook ups and many vertical bars that hold the pumps, and many high hooks to support iv bags, transfusion bags, etc. The lighting was cool white, alexs color was pale. The first impression was...he is awake! That was a great sign. The bandages cover a large portion of his head but he looked ok. He is still no where near the Alex that came through the doors forty something days ago, but he was sitting upright was awake and looking around.
The last several times that we walked into an ICU room after surgeries Alex was asleep and had so many wires, so many machines. The last several times Alex had life saving respirators and a dozen IV lines into him. The first time we walked into the ICU room forty something days ago, several nurses moved around feverishly pushing a dozen meds, several nurses in panic mode watched the vital signs on various monitors while several other nurses pulled us into the hall and asked us questions. That visualization in my head was then, this is now...So many thoughts went through my mind and so much strength was required to make the attempt to stay in the "right here right now" moment and focus on where we were now. While walking toward the ICU room just minutes ago, these flashbacks of the first night had hit me. In my mind I began to recall the nurses, the doctors, the fast movement, the number of people involved. On day one, forty something days ago, I walked into a hallway that was busy and in panic.
After the second and third surgeries, Alex had a breathing tube and was heavily sedated. We had walked into the room and sat by his side with the "God please help us! God help Alex and get us through this". It is almost like we prayed alot harder...did we have a lot more energy to pray or was the situation different? Tonight I walked into a room that did not present panic. There were not a lot of nurses nor doctors moving around frantically. Alex was awake and showing signs of waking up more than he already was, showing signs of confusion, aggrevation, discomfort and pain. He squinted his eyes as if he were about to cry.y heart broke for him, I could almost feel his pain and his confusion but I couldnt let him nor anyone else know that deep down inside I was hurting with him. Alex had just gone through a 6 hour procedure. Alex just had a crazy amount of stitching....something has to hurt!!!
I have had stitches before and they hurt! I have also had minor stitching to my finger and oh my goodness...that hurt. I can only imagine the pain and discomfort that this poor child was going through. What hit me the hardest was his fascial color and the bright red blood stream that ran down his forehead. The nurses asked questions, I couldnt hear anything at the moment. I had not seen my kid all afternoon, now I see him and he has a slow steady stream of blood flowing down his forehead and I stop it before it hits his eyebrow. The nurse is still asking me questions. All I hear is blah blah blah blah..."Nurse. Get some more bandaides, stop this blood from flowing and then maybe I may be able to hear you...at this moment I can not take the focus off of my bleeding kid to look your way". The nurses gave me a couple of boxes of gauze and stepped out of the room in search for large enough bandaids.
Within a few minutes Alex had three large bandages over his scars and blood ran down through the bandage on his left side as he laid his head that way, the blood was now being absorbed by the bandage and no longer flowing down his forehead and toward his eyes. My son was awake but he was bleeding. The bright red was very bright red in contrast with the bright white bandage and the greenish gray color of his skin.
Alex was stable. He needed blood because he lost a lot of it. He wasn't able to get any rest In the ICU Monday night. While in the ICU the nurses have to poke him every hour. Temperature, blood pressure, heart rate, oxygen levels, listen to lungs, listen to belly, shine bright light into eyes, etc. Monday was now another no sleep kind of night with all of this going on and with all of the nurses asking us hourly if this was baseline or if we see anything of concern. Midnight through 9am Tuesday was a blur. Alex was given medication to sleep and relax....they wouldn't give me any.
Tuesday was a blur during the day. The ICU, the family room, the halls, the dings, we want out of here. I was exhausted and as soon as mom could relieve me for a bit, I went over to the parent sleep room to make an attempt at sleeping. I was able to get a little sleep between 9am and 12pm with only 3 knocks on the door about room cleaning, a turn in your key reminder and some little sibling looking for his parents room after taking a quick visit to the public hall bathroom and all doors looking exactly alike.
By 130pm I was back to Alex bedside. Alexs drain was draining a lot of blood. The team was reviewing his status and his schedule as to when to transition to the floor. My first impression of Alex right now was that he looked pale, I mentioned it and the team decided to draw some blood and check it all. An hour later the lead nurse came by and said "you guys arent going anywhere....Alex needs a transfusion, He lost blood and we will get him back to himself in 4 to 5 hours". We waited on the delivery of the transfusion. Once we received the bag...somewhere around 6pm the nurse began her set up of the machines. The iv machine was to pump the blood into Alex via his pick line. Over the first hour the machine kept beeping occlusion on patient side. The nurse would flush the line and the flush went fine but the blood would not. The nurse changed several pumps, changed several iv lines and then made decision to swap from pic line to another iv that was in his left arm. 7pm a nurse came in and said..."as soon as the infusion is complete you can go to the floor". A few minutes later another nurse came in and said "no...it doesnt make sense to go up now, you stay the night". I set up my window seat nesting area and lay my head on my backpack. I placed my hand in my pocket and had enough energy to hold the beads and ask for forgiveness so that my prayers could be answered. Im uncertain if I even closed my eyes before the night nurse came in and said "I hate to do this to you but....we were just told that there is a big influx of children in need of ICU beds. Alex is pretty stable and can be moved to the floor". I was annoyed about the uncertainty, I was annoyed that this poor kid had to keep getting woken up after all the crap that he has gone through. On the other hand I was excited, blessed and fortunate that they considered him safe enough to travel. Thirty days ago Alex was so fragile that everything came to him. Thirty days ago Alex could not be moved up nor down nor side to side.
Right now she was telling me that he just had surgery yesterday, but right now less than 24 hours later there were a lot of kids in the hospital that needed ICU care more than Alex. Alex was stable and could rest peacefully upstairs. Right here, right now, there were a few kids that were going to be in desperate need of the equipment. We waited, I waited, I was annoyed, but I understood. It sucked to be moved but it was a relief to only need ICU for one night.
At 2am we rolled out. We arrived back onto the same floor and same exact room that I emptied out three nights ago.
It was now Wednesday morning. 230am and I was turning his lights of, I was making attempts to get myself ready for sleep because it was 230am and we know who wakes us at 5:45am. It is 230 and knocks at the door. The nurse in charge of the floor needs to come in, introduce herself, check Alexs tags, ask questions, ask about concerns, etc. It is 2:50am and knocks at the door, two or three people walk in, they are neurology, they introduce themselves, they need to do a neuro check and they ask me about his seizures and ask if I have any concerns. It is 330am and knocks on the door, the night nurse checking in on us, do we need anything? She lets us know that she will be back at 4am to hook up his antibiotic to the iv and then at 6am for vitals and his 6am medication. We review the medications, I ask if she needs me or if I can shut my eyes....I do not even remember the answer.
Wednesday morning at 545am the neuro team came through. They let us know that they anticipated the mri this morning. We waited. Same story as surgery. We waited all day, there were anxieties. We waited all day and we kept getting told that we were in que. It was a long day, but a recovery day. Alex slept on and off through out most if the day. We met the different teams, all said that he is doing very well compared to 40 something days ago and compared to the direction that they thought he was going to take. He received his 6pm meds, he received his 8pm meds and at some point this night nurse came in to say tbat he was in que and brought me the consent form. I was confused, upset, annoyed, frustrated, you name it.
I asked if I could refuse. Nurse said I had the authority to refuse, accept, reschedule, etc. I didnt even take a split second. I straight out said "Nope...not tonight....last night was an anxiety attack all night till 3am in the morning. Alex may have slept, but I havent. Its 9pm bring Alex an ambien to help him sleep and lets turn these lights off until Neuro surgeon turn them on at 5:45am Thursday morning. It was a long day, sleep is good, I couldnt stay up late. Even then knocks on the door, teams come in to tell me that I made the right decision and that tomorrow is another day.
Thursday 545am. Neuro surgery came in, did thier bedside exam and again stated mri this morning. We waited. We received a time slot for early morning. We rolled down to the floor for the procedure. My anxieties were through roof again. Everyone let me know that this was fast, didnt require sedation and that it is done all of the time. This was to be a fast maybe 10 minute scan. I was trying to picture it. Ive done stuff with him...he doesnt keep his head still how is rhis going to happen. We get down to the mri room ans they wouldnt let me in. Now I was mire confused. They said you need to change out of all your clothes ans into scrubs, they said they can do the scan faster that I can disrobe and robe and to trust them. I was confused, but this was in Gods hands. They told me where I could stand and so I stood. Alex was rolled through 2 doors with the two nurses that brought us all down from the floor. They didnt need to disrobe nor robe and i am pretty certain that thier scrubs came from home, so I didnt truly understand the difference. 15 minutes later I heard and saw them come through the doors. He looked exactly the way he did when he was rolled in through the doors. The nurses shook thier heads and said that he didnt cooperate. They laid him down but he didnt keep his head still. The lead nurse said...our RN will need to come up with a plan and revisit. His not cooperating this morning cost me the day if anxiety all iver again. We waited and waited and waited....he had his 6pm meds, he was about to have his 8pm meds and at that moment I told the nurse. If we dont roll out by 930 so that he is back by 10pm, they will need to reschedule for another day. She looked upset and frustrated about what I had just said. Well...I get it...it was her 2nd 12 hour shift and she is juggling three patients, it isnt easy to organize and coordinate transport and mri room and mri techs, etc...but damn....im on my 48th or 49th straight 24 hour shift. At 9pm they gave Alex a dose of Ativan. He fell asleep and was able to be rolled out, transported to the mri room, shifted off of beds, had the loud mri in his ears and didnt move. He was transported back to the room by ten. Alex remained asleep until 545 when neuro surgery came in for thier review.
I was able to rest now. I was anxious now about the result of the test that we could only hear about Friday. I had to block that from my mind. Its ten oclock thats 2 hours till midnight meds, thats 6 hours till his antibiotics and eight hours until neuro surgery wakes us. I hope that I can get somwe sleep. Mom is in the room tonight, i set up my camp cott, lay myself down. I dont even have enough energy to put my hand in my pocket to reach for my rosary. I make the attempt to pray using my fingers as the digits for the beads. Alex is sleeping, within this room things are quiet, things are not as cold as they have been. Within this room we plan on staying and resting. Alex is asleep, Alex is stable, I fall asleep without praying and ironically my prayer of the moment for restful sleep is answered.
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