Posting from my phone so please excuse the million typos.
I cannot begin to tell you how confusing the last 48 hrs have been. Let me recap:
10/06/15 walked into the hospital for surgery her normal chipper self. Had gtube placed. Normal grogginess after surgery.
10/08/15 had first gtube feed with Nestlé Complete.
10/09/15 med supply company delivers our preferred formula (Liquid Hope - amazing stuff!). Nurses prepare discharge papers. Angela is very quiet. We go home.
10/12 she goes back to school but is still not herself. Quiet and tired. She doesn't make it a full day.
10/12-10/31 Angela gets more tired every day. Her blood pressure plummets multiple times. Ambulances are called to school. In general she is not right but nothing we can put our finger on.
10/31 she is very tired and has tremors but really wants to go trick or treating with the little kids. We only do a few houses because I can see she is fading. She is not answering questions and I would call her mental state a "stupor". We go home, get her last feed for the night as she sleeps on the couch. She is very difficult to wake up to move to her bed.
3 am I wake up and check on her. I find her on the basement floor unconscious and unresponsive. Ambulance is called. On the way she becomes combative, but still unresponsive. She is admitted to ICU in a coma. I am asked about 20 times if she could have gotten into anything or if someone could have put something in her gtube. Over the next 48 hours she gradually wakes up and is more awake than she has been in a month. She is chatty and chipper, although she has these odd tremors.
11/03 she comes home mostly herself again. She starts back to school but cannot make it a full day. She is moving from lethargic to sleepy.
Through all this there were countless conversations with doctors. But she is just sleepy. Not much to do. I decide there is a connection with the formula. Too many calories? Not enough calories? Too much water? Not enough water? She sleeps most of every day.
11/05 we normally give her 4 feeds per day. Our schedule was thrown off and she only gets 3. In the morning she is easier to wake up but very irritable. She is awake all day for the first time in several days. In the evening she goes to a disabilities dance for a couple of hours but does not make it the whole time.
11/06 I email her doctor. As long as we can wake her and her blood pressure is ok we can keep her home. I wake her every hour and give her feeds while she sleeps. Get her to the bathroom every 4 hours.
11/07 repeat of the day before.
11/08 call the doctor first thing in the morning. We agree if she is still sleeping on tues to bring her into clinic. I wake her several times during the night to make sure shes ok.
11/09 wake her up for dr appt. She has been sleeping for 14 straight hours without really moving. I am able to get her out of bed and to the bathroom but with a lot of support. She is not talking or answering questions. I get her to sit down at the table. Her eyes are only 1/2 open when she slumps her head to the table. Dean calls 911. She is able to walk to ambulance with 2 person support but her eyes are closed. After about 2 minutes in the ambulance she is unresponsive.
In the ER they do all the same bloodwork and tests. This is named coma #2. There is nothing they can find. They again ask Dean and I who has access to her gtube besides us. Since she hasnt been in school there is nobody. We make it clear we will not bring her home again until we know whats going on
11/10 observation and tests. She is getting perky.
11/12 she is the life of the party. More questions, along with a list of drugs that would not show up on a toxicology of blood or urine. Do we have any of those in the house? Do Dean or I have prescriptions for any of them? We are asked again and again.
11/13 we start the feeds back up. I insist she is fed the same formula she gets at home so her reaction can be observed. I refuse to do the feeds myself or to do anything with her cares. I won't even go near the beds during feeds. This needs to be all them.
Evening of 11/13 I bring Axel up to the hospital. Angela's hands and arms are trembling. She has feed #2 while we are there.
11/14 she has her morning feed. Dean goes to visit at the hospital. She seems "fine" but I call and insist she get out of bed and walk around. Oh, surprise she can barely stand without support because her legs are too shaky. Dr is seeing the pattern with feeds. 11:00 am she calls me. I told her with the next feed Angela will start to get drowsy. They stop her feeds, contact metabolic specialist who orders an ammonia level. Normal is under 15-45 Angela is at 221. Suddenly there is urgency.
Genetic testing is ordered to test for the x-linked enzyme OTC Deficiency. It is a rare and deadly disorder. She cannot process protein. This amazing formula has given her more protein than she's had in her entire life.
A special rescue drug - Ammunol - is ordered. There are only 6 doses in the entire 5 state region. Coat is $100,000 per dose. One is flown up from Mayo clinic. 11:00pm Angela has a picc line out in. The nurses are all in a tizzy because this hospital has never administered this drug! 12:00 am she is moved to the PICU. This drug requires her blood sugar be tested every 30-60 minutes. Insulin is kept on hand. She needs lipids, dextrose, fluids..everything all at once.
The drug arrives. It should be encased on gold the way everyone is acting
The nurses and doctors meet outside Angela's room. They go over all the side effects to watch for, when to declare emergency response, blood glucose every 30 minutes, ammonia level every hour, insulin as needed for high sugar levels, watch for burning of tissue because drug is caustic, patient will complain of burning throughout duration because it burns inside. It is a 24 hour continuous drip. 48 finger sticks, 24 ammonia draws, 1.5 liters of fluids per hour. Watch for coma. The drug was started at 2:00am Sunday morning.
I cannot begin to tell you how confusing the last 48 hrs have been. Let me recap:
10/06/15 walked into the hospital for surgery her normal chipper self. Had gtube placed. Normal grogginess after surgery.
10/08/15 had first gtube feed with Nestlé Complete.
10/09/15 med supply company delivers our preferred formula (Liquid Hope - amazing stuff!). Nurses prepare discharge papers. Angela is very quiet. We go home.
10/12 she goes back to school but is still not herself. Quiet and tired. She doesn't make it a full day.
10/12-10/31 Angela gets more tired every day. Her blood pressure plummets multiple times. Ambulances are called to school. In general she is not right but nothing we can put our finger on.
10/31 she is very tired and has tremors but really wants to go trick or treating with the little kids. We only do a few houses because I can see she is fading. She is not answering questions and I would call her mental state a "stupor". We go home, get her last feed for the night as she sleeps on the couch. She is very difficult to wake up to move to her bed.
3 am I wake up and check on her. I find her on the basement floor unconscious and unresponsive. Ambulance is called. On the way she becomes combative, but still unresponsive. She is admitted to ICU in a coma. I am asked about 20 times if she could have gotten into anything or if someone could have put something in her gtube. Over the next 48 hours she gradually wakes up and is more awake than she has been in a month. She is chatty and chipper, although she has these odd tremors.
11/03 she comes home mostly herself again. She starts back to school but cannot make it a full day. She is moving from lethargic to sleepy.
Through all this there were countless conversations with doctors. But she is just sleepy. Not much to do. I decide there is a connection with the formula. Too many calories? Not enough calories? Too much water? Not enough water? She sleeps most of every day.
11/05 we normally give her 4 feeds per day. Our schedule was thrown off and she only gets 3. In the morning she is easier to wake up but very irritable. She is awake all day for the first time in several days. In the evening she goes to a disabilities dance for a couple of hours but does not make it the whole time.
11/06 I email her doctor. As long as we can wake her and her blood pressure is ok we can keep her home. I wake her every hour and give her feeds while she sleeps. Get her to the bathroom every 4 hours.
11/07 repeat of the day before.
11/08 call the doctor first thing in the morning. We agree if she is still sleeping on tues to bring her into clinic. I wake her several times during the night to make sure shes ok.
11/09 wake her up for dr appt. She has been sleeping for 14 straight hours without really moving. I am able to get her out of bed and to the bathroom but with a lot of support. She is not talking or answering questions. I get her to sit down at the table. Her eyes are only 1/2 open when she slumps her head to the table. Dean calls 911. She is able to walk to ambulance with 2 person support but her eyes are closed. After about 2 minutes in the ambulance she is unresponsive.
In the ER they do all the same bloodwork and tests. This is named coma #2. There is nothing they can find. They again ask Dean and I who has access to her gtube besides us. Since she hasnt been in school there is nobody. We make it clear we will not bring her home again until we know whats going on
11/10 observation and tests. She is getting perky.
11/12 she is the life of the party. More questions, along with a list of drugs that would not show up on a toxicology of blood or urine. Do we have any of those in the house? Do Dean or I have prescriptions for any of them? We are asked again and again.
11/13 we start the feeds back up. I insist she is fed the same formula she gets at home so her reaction can be observed. I refuse to do the feeds myself or to do anything with her cares. I won't even go near the beds during feeds. This needs to be all them.
Evening of 11/13 I bring Axel up to the hospital. Angela's hands and arms are trembling. She has feed #2 while we are there.
11/14 she has her morning feed. Dean goes to visit at the hospital. She seems "fine" but I call and insist she get out of bed and walk around. Oh, surprise she can barely stand without support because her legs are too shaky. Dr is seeing the pattern with feeds. 11:00 am she calls me. I told her with the next feed Angela will start to get drowsy. They stop her feeds, contact metabolic specialist who orders an ammonia level. Normal is under 15-45 Angela is at 221. Suddenly there is urgency.
Genetic testing is ordered to test for the x-linked enzyme OTC Deficiency. It is a rare and deadly disorder. She cannot process protein. This amazing formula has given her more protein than she's had in her entire life.
A special rescue drug - Ammunol - is ordered. There are only 6 doses in the entire 5 state region. Coat is $100,000 per dose. One is flown up from Mayo clinic. 11:00pm Angela has a picc line out in. The nurses are all in a tizzy because this hospital has never administered this drug! 12:00 am she is moved to the PICU. This drug requires her blood sugar be tested every 30-60 minutes. Insulin is kept on hand. She needs lipids, dextrose, fluids..everything all at once.
The drug arrives. It should be encased on gold the way everyone is acting
The nurses and doctors meet outside Angela's room. They go over all the side effects to watch for, when to declare emergency response, blood glucose every 30 minutes, ammonia level every hour, insulin as needed for high sugar levels, watch for burning of tissue because drug is caustic, patient will complain of burning throughout duration because it burns inside. It is a 24 hour continuous drip. 48 finger sticks, 24 ammonia draws, 1.5 liters of fluids per hour. Watch for coma. The drug was started at 2:00am Sunday morning.
1 comment:
we are praying. I hope the "burn" is not worse than a bad potassium drip. ( my drips have made me want to rip my IVs out) That sounds so painful. :o(
((((HUGS))))
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