Regarding Labs

Things I talk about a lot...
ANC--is an aspect of his white blood cells. This number represent his ability to fight off a bacterial infection, there is no transfusion for this if it is low.
Normal range is 10,000-14,000(Jack is aceptable in 7,000-10,000 though)
Caution Zone is 500-1,000
Neutropenia is 0-500

HBG--is an aspect of his red blood cells, this shows if he is anemic or not, it is responsible for  carrying oxygen around to his body.
Normal range is 11 or higher
Low is below 10
Transfusion if lower than 8

Plateltes-- like the bandaide of the blood, keeps him from brusing and bleeding out.
Normal range is 150,000-450,000
Caution Zone is below 50,000
Transfusion if lower than 20,000

ANC is calculated using two of the five cell that make up your white blood cell count(WBC) and then multipied by your WBC. They are so closly related that I often use ANC and fail to mention the WBC at all. As with HGB and red blood cells.

Being Taken Off the Ventilator

We started the "dance" to get him off the ventilator four days later. Slowly cutting the medications back to let him breath on his own again. When he passed the practice test, he was cleared to have it removed. It was so nice to see his face, to see him breath on his own. And hear that scratchy cry, I missed hearing his cry. Everything went smoothly for about twenty minutes. We shuffled around the bed and cords and got to where I was sitting with him in my lap, and then it started. To be weaned off the drugs, you have to be on them for 5 days, Jack was on them for four days. Dr. Delgato made the hard decision to cut him off cold turkey. He was laying in my lap and the shaking began, then the sweating, the teeth chattering, and finally the writhing. He was coming down hard and all I could do was rock him, hold him, and put ice water wash clothes on him to cool him off. My husband held his legs down, and untangle tubes. There were IVs in three of his limbs and they had the boards taped to them to keep him from bending his wrist and ankles. Three IVs, the monitor stickers with the wires, the catheter, the external line coming off his chest, the oxygen on his face, it was too much to maneuver. His catheter came loose, pee went all over me. There was no way I could sit him down, let alone go change clothes. My heart ached for him, his eye were screaming, the loudest silence I have ever heard. Every nurse that came in called the doctor back, it was "too hard to watch". All four times she explained herself, she didn't want to give a child, that had just started breathing on his own, a sedative. I finally asked her, "Is what has to happen? Tell me. If I just have to help him work through this, just say so. I'll hold him down till it's over, just tell me I'm doing what I have to." She gave a long winded, and sympathetic, "Yes." Two hours later is subsided. He was still shaking, but we didn't have to hold him down anymore. He looked pitiful. Tired. Sad. Beat. Listless. But he was breathing on his own. That was the best and worst day ever, the hardest two hours of my life, I am so thankful he will not remember that.

MRSA(staph)

It was the next day that the MRSA(staph is what I have always heard it called) results came back. When we arrived at Oakland they swabbed his nose. Thank goodness he was out for that, it looked painful. The results were positive. He did not have an active staph infection, but he was colonized(in his nose). Which means that he can spread staph, but he does not have an active infection that is harming his health. They said 50% of the population has it, and he could have picked it up anywhere. It was only an issue in the hospital because people there have open wounds, and suppressed immune systems. We were put on isolation. It didn't mean much at the time, but it would prove to be a difficulty for Jack.

Diagnosis

The next morning, the 12th of October, we waited for the ER to open. He was to have a bone marrow biopsy/aspirate, a lumbar puncture and a biopsy for the lymph node in his neck. These results would give us a diagnosis and treatment path. The doctor had told us that Jack was in a critical condition, and that time was of the essence. We waited all day, but the OR never became available. I told myself that they were helping another child, one in more danger than my own. We stayed calm, kept asking if there was any news of an available time. Toward the end of the day things were tense. The mass in his chest was still growing, time was felt like it was running out. That evening the doctors came to us with a plan. They said that they felt uncomfortable waiting any longer and they decided to start treating him before diagnosis. Just some steroids to shrink the mass. I asked why they had not started this already. The Doctors were apprehensive because the steroid work so quickly that they skew the results. The danger of unnecessary steroids and skewing the results was much less than the dangers of waiting for the OR to open while letting the mass grow.
 After another night in the PICU, we were in the OR the following morning. The results came back on the afternoon of the 13th. We were asked to meet in another conference room while someone sat in with Jack. They diagnosed him with High risk, stage 3, Acute T-cell lymphoma.  The treatment plan was three years of chemotherapy, give or take. A one month block called induction was the first round. After induction Jack was to be re assessed to see if he was in remission. If not, he would be re-induced until remission was hit. If he is in remission by the end of induction, he moves on. Induction had several drugs and was supposed to be 29 days long. The prognosis for this diagnosis was 75-80% chance of making it to the 5 year mark. After that risk of relapse decreases dramatically. I took notes, asked questions, we signed papers, were given copies of pamphlets, copies of other information, and we went back to Jack. He had already started the steroids, the next day his chemotherapy drugs were started, this was day one of Induction.

PICU at Oakland

After we were in the bed in the PICU, things get fuzzy. It's amazing to me how similar this whole situation was to giving birth. Time was stretchy. I thought we had been there for a week, but was corrected, we had landed only 48 hours prior. I was convinced that the nurse was wrong, she wasn't. 

One of the first things they did was take his weight using the bed scale and the weight was too low. I tried telling them several times that his meds are based on the wrong weight. Over the course of the prior three days, my home scale, the Urgent Care scale, and his pediatrician's scale weighed him at 29.5 lbs (I remember being excited that he was going to break the 30lb mark soon). But they weighed him at 25lbs, and they had to go by what their scale said, not word of mouth. I think that is why they had so much trouble keeping him under. He keep coming in and out of consciousness. The nurse said that the breathing tube was keeping him alive and he could NOT pull it out. If he did, they might not be able to get it back in. I thought, "What the hell?!? KNOCK HIM OUT THEN!" He kept coming in and out, trying to raise his arms, turning his head back and forth. I didn't think that it could get any more stressful, but I was wrong. It then turned into us sitting next to him waiting for the tube to be pulled tight, so we could hold him still, give the tube slack, and talk him into a deeper sleep. He was never awake enough to grab it and pull, thank goodness, it was just groggy protest. My husband and I were on pins and needles, terrified that he would manage to get it out. But that is normal, I guess.We had to have a consult with the attending doctor that night, Dr. Marsh. I had someone sit with Jack and told them not to be scared to hold him down if he woke up. Do what had to be done, that tube WAS NOT to come out. Not having any medical training made me more nervous, I was not sure of all the repercussions. 
In the consult Dr.Marsh went over the probable diagnosis (lymphoma and/or leukemia), how diagnosis would be determined (surgery/procedure), the prognosis, and what the next steps would be. She showed us the xray and CT scan that the ER had sent them. It took up his entire chest (so it looked, I am still curious how big it was messured to be. The exact measurements didn't seem important at the time, but now I wish I had asked.) I asked if there were other possibilities and she gave the next options (benign tumor, and such). She said that she works with this a lot and she felt that looking into other options was not helpful at the time, we just needed to get to the diagnosis and go from there. She said that she had heard what happened, but if I didn't mind, she wanted to hear it from me. She said we were very lucky that the tube was put into place at the scene. Often times, when it is as progressed as Jack's was, there is no room for a tube and the child cannot be helped.Thank goodness for those paramedics, for the timing, for the resources that saved my son. And that reminded me of what the nurse had said, don't let the tube out, it might not get back in. I needed to get back to Jack. And to wait for the OR to open.

Getting It All Out

In the beginning of October, Jack started whistling when he laughed or cried, effects of a stuffy nose, we thought. Looking back, that was the first physical sign. On October 08, 2011 my husband and I took the kids to the Wine & Cheese Festival, and we had a great day. Jack rode his first “roller coaster”, we came across some family and friends there, enjoyed the nice weather, the day was perfect. Afterward we went to dinner together and that is when I noticed a lump on Jack’s neck. My husband and I talked it over and agreed that it didn't feel right. So we canceled dinner and headed to the Urgent Care. The Urgent Care was closed, the next step was calling the 24 hr. nurse hot-line to see if we needed to go to the ER, or wait till Sunday morning for the Urgent care to open. We sat outside the closed urgent care on the phone while the nurse assured us that, without a fever or cough, it could wait till morning. We were still a bit uneasy. He slept in bed with us that night, for the first time in almost two years.  The next morning at the U.C. he was given medicine for tonsillitis, and the swollen lymph node would decrease in size along with the healing infection.  Monday pasted uneventfully, and Tuesday morning was the check up with his regular Pediatrician. She gave me the okay to continue with a new antibiotic, and we started chatting. I asked her about his lack of appetite and the breathing. I felt like I could hear him breathing from across the room, some kids are noisy breathers, Jack is not. I expressed my concern, this was not normal for him. She said is was normal for an inconsistent appetite, as he was a toddler and not to worry. When she noticed the breathing I was talking about at the end of the appointment. She said it was probably nothing, but wanted an x-ray to be cautious. By noon the appointment and xray were done and he was home napping. I had another appt for Kate that day, other than being tired, he was my good, happy baby. We were heading across town when it happened. My 19 year old brother, Seth, was in the car with us. Jack started fussing for a drink. I was just happy he wanted to drink at all. He had been having trouble keeping up on his liquid intake b/c of the sore throat that tonsillitis caused. I assured him we were stopping at the little store for a drink, only three more blocks. And with that his whimpers got shorter and shorter then he stopped fussing/whining, very unlike a two year old. I asked Seth to look back and see if Jack was okay. I looked at Seth, he was looking at Jack with a bad/confused look on his face. I looked back and locked eyes with him. Jack was stiff, he look scared, his lips were turning blue. At the same time, I pulled over, yelled “Call 911!” repeatedly, swatted at where I thought my hazards were and then the car was stopped and I was getting out. I grabbed Jack out, laid him on the trunk and started CPR. A bystander said they were certified and pushed me out of the way. (There is a lot that happened in that short period of time, there were actually two bystanders that stepped in, but I told one that he was doing it wrong and took back over, that is when the second man stepped in. Some woman grabbed me and hugged me, consoling my hysterics. I pushed her away and went to Jack while the second man was doing CPR. I checked his air way, and stuck my finger down his throat, physically opening the air way, then blew air in. For a second his lips lighten and faded pink, then blue again. And nothing I did after that turned them pink. One of his pupils dilated and then the other. There was no color to his eyes, just big black pits staring at me. I popped his cheek, said his name, nothing. He was unconscious at that point and I was not changing it.). The ambulance arrived some time after that. Put a breathing tube in, started ‘bagging’ him. I rode with a cop to the ER. When Jack was wheeled inside I heard him trying to cry. Relief. Crying=breathing.  He was on the gurney, trying to breath. With every breath there was this awful raspy/gasping noise as a bit of air slipped in, and his chest would cave in two or three inches. The doctor said he could not breath on his own and they continued to “bagging” him till the ventilator arrived. He was put into a medically induced coma, and the ventilator would breathe for him. The x-ray came back “horrible” and the CT was ordered. It was “markedly abnormal” and the doctor couldn't help Jack. He was to be medi-flighted to a facility with the resources we needed. We rode there together and soon we were in the PICU of Oakland’s Children’ Hospital.