God was there, pt. 4 (The longest 10 weeks of our entire lives)
The photo says it all. He was in intensive care for about 2 weeks; then for another week towards the end of our stay. These 10 weeks were brutal. We were in fight mode, a fight to get our Jorgie back. The blood clot had caused tremendous damage to his already compromised brain and 12 years of therapy and hard work, in-home and out of the home, were being threatened.
No one could believe this has happened to us, we were referred to the family that goes from crisis to crisis as this person shakes her head. Not necessarily the foot print I wanted to leave in this world.
The time in the ICU, of course, was critical. He was having multiple seizures as the swelling in his brain went down, and as the anesthesia wore off the pain became excruciating, causing his heart rate and blood pressure to increase to dangerous numbers. When heavy pain meds were administered, his heart rate and blood pressure would drop dangerously low. This was not a fun game. This was not a fun anything. I wanted off this ride, I wanted this to go away. God please make all of this go away!!!
Just less than 24 hours before I was at the office, content helping a very tired and overwhelmed couple with their baby, they seemed so distressed and worried over their fussy, uncooperative baby. It was really hard not to feel anger at this moment, I was tired and who knew how long before we get to take our boy home. What about the girls? Work? What are we going to do? I couldn't understand why God allowed this to happen.
Jorge wasn't much of a planner and relied on me to work out the details for the girls. He was working out the details with his job. How long can he get time off for and not lose his income? Then there was the school. About a week into being in the ICU, Jorgie's social worker calls me, in shock when she heard he was in the hospital and why he was there. "Call the school and ask them for an incident report." She couldn't believe they hadn't handed me one the day of the accident. I didn't want to make calls, ask for papers, I was tired; I hadn't slept in a week and I had barely eaten anything. I wanted to be left alone with my son. Jorge was going back and forth between the hospital and home, tending to our girls. We both felt it was best If I stayed by Jorgie's side the majority of the time.
"I'm sorry Mrs. Alvarado, we don't give this report to the public." The public? I'm the public? "I'm his mother!!!" "Yes but we can't give you this information" "Maybe if you call this number and talk to the superintendent". Well I won't get into this side of the story, but I will say this. The big wigs that were in the classroom the day of the accident? Had all been transferred to another school district, including the principal. By the time, I had the strength to begin asking questions, no one knew a thing or where that report had gone.
Well back to the hospital. I couldn't deal with whatever the school district was doing at the moment, I needed to fight for my son's life. After he was transferred out of the ICU, the plan was to put him in rehab, to see how much of his old-self we could recover and to see how much permanent damage was done.
These 8 weeks were a nightmare. At around week 3, Jorge had to return to work. Which meant working night shift and sleeping during the day. The girls and I moved into the Ronald McDonald house across the street from the hospital. It is a beautiful, cozy, child-welcoming, child-friendly place, but much of it isn't appreciated or even liked by us parents because all of the parents who are residing there have a child in critical condition at the hospital. Walking into the Ronald McDonald house during dinner time, is like a live scene from the "walking dead", I say that with the utmost respect because we were one of those zombie families. We were tired, distracted, sad, angry, frustrated, just getting through the day, always with the question "will my child get better?" "Will we ever have a "normal life" again? People would ask questions and it was as if they were speaking a different language, I didn't understand, nor did I care to. Nothing meant anything if it didn't have to do with my kids. I felt lost and in a fog. For those 8 weeks, it felt like we were cut off from society, just surviving, trying not to lose our minds.
By week 4, panic attacks started kicking in. This is what our days looked like:
5am: Wake up, hoping Jorgie is still asleep so I can run across the street and relieve my sister so she can get home and to work. She was sleeping at the RMH with the girls, so I could stay with Jorgie over night.
5-7am Get girls up, bathed, dressed and in family kitchen to make breakfast. Each of us families are given a mini fridge and cabinet to store our groceries. Continental breakfast was always available but muffins and oatmeal get old after awhile. I needed to cook for my girls. I would scramble them up some eggs, some wheat toast, and we would sit together to eat breakfast. While they ate I would run back and forth to laundry room, making sure they had clean clothes. I continue to be so grateful to RMH, they had a summer school program for the older kids, so I would walk my Sarah over to a cute classroom, full of other siblings and a very sweet, trustworthy teacher. Aaliyah and I would run across the street to get Jorgie ready for his heavy rehab schedule.
I was in charge of dressing Jorgie, and getting him up out of his chair. The rehab department nurses aren't as hands on as the other part of the hospital. Around lunch time. I would plead with Jorgie to take a nap so I could run across the street with my little Aaliyah for lunch and to pick up Sarah. Sometimes he would and sometimes he would just cry until I got back. I had to feed my little girl, I was constantly torn and heartbroken. After lunch, my girls would plead with me for a little more time so they could play on playground. I would have to call nurses station. "If your brother is sleeping, you can play a few minutes, if not, we have to go back to hospital.
While in hospital room, girls would color, draw, watch movies. While I talked to doctors, nurses, tended to Jorgie, got him ready for next therapy session. Sometimes the girls were given an opportunity to go to a playroom close by, if there were volunteers that day. Jorgie would nap on and off and I would grab girls and walk them to a whimsical garden that was on next floor to get some fresh air and play. This was bittersweet because the garden is on the floor with all of the dear, sweet cancer patients are with their families. The heaviness, heartache and illness, day after day, week after week, it was too much!
Dinnertime was a repeat of lunch time, but now girls are getting cranky and sick of going to the hospital, couldn't blame them, I was too.
Around 8:30 pm I tucked Jorgie in, all visitors and siblings had to leave, so I had no choice, awake or not, I needed to get girls back to the RMH room. This was the hardest time of the day. It's dark, by now I'm fighting off tears, feeding girls a snack while girls beg me not to leave them that night. "Why can't a nurse watch him?" "Because honey, they can't, I have to make sure he is taken care of" "Titi is coming" My poor sister was juggling college, work, and helping me with girls. She was and is our guardian angel. She wouldn't get there until 11:30 at night. My girls always had tears when I left them to go sleep at the hospital. They were done and I was too. Dad would come and visit and sleep there on the weekends, which gave my sister a break.
The 5 am alarm went off, and it was a repeat session of the same.
By week 6, the doctors were discouraged, his progress with therapy was slower than expected and the timeline for recovering and going back to baseline was close to an end according to their medical knowledge and experience. "If he hasn't recovered by now, he is not going to, we are so sorry". One of the biggest hits was his inability to eat. He was dropping weight fast and was near undernourishment. I was against the idea of a g-tube. I fought 12 years to get him to eat! He loved to eat! No! More therapy!!! One more week!!! Please!!! Finally the doctors and therapists called a final conference at week 7. We sat on this long oblong table, every one with their charts, staring at me. Every one had something to say about my son. Most was not good. They were giving up. His recovery had hit a wall and they pointed out that I was not doing well either. I was crying all the time and snapping at the staff, I was losing it and they were right. They pointed out that we needed to go home and continue therapy at the therapy unit. We are talking about going from 20 hours of therapy a week to 3 hours a week, at the most. Talk about a slap in the face. I know they did their best, but I was angry.
His g-tube was inserted that week. I felt defeated, I lost, we lost. I didn't understand. To add insult to injury, I called my boss and job of 15 years. With tears and a lump in my throat "I'm not going back to work, this boy needs me and I have to learn how to take care of him, they say he is my son, but I don't recognize him." He no longer smiled, his body was twisted, his sounds were different, and he couldn't eat, and his whole right side was paralyzed.
Who is this child? Where is my son, I want him back!!!