Dear Parents of Ed,
Thank you for reaching out. This is an excellent question and is also an extremely difficult one, because either way you feel like you lose. If you admit your child into a hospital, your child will likely “hate” you, berate you, and make you feel like the worst parent in the world. Yet, if you don’t admit your child, you might very well be putting their life at risk, depending on how ill they are. In my opinion, if you are even questioning the topic of admittance, then you probably know what you need to do but you are hesitating to do it, which is completely understandable. Sometimes one parent believes treatment is needed but the other parent thinks you might be blowing things out of proportion and/or that hospital treatment is unnecessary. When parents feel divided on the topic, it complicates things even further.
What makes the decision even harder, is your child is likely to have tons of anger toward you. This is very typical when the brain is starved. It is the cognitive portion of the brain that is often affected when the brain is starved. This affects things like, memory impairment, attention, and executive functioning so it is unlikely that you can sit down and talk logically about the need for more intensive treatment, with your child.
For us, it was our son’s psychiatrist as well as his pediatrician that had, independently of one another, advised us to seek hospital treatment. At first we admitted him to a partial hospitalization program (PHP), where he was in intensive therapy for 12 hours of the day, 6 days a week. We felt like this was less of a drastic decision than to admit him into the inpatient program. We also were hopeful that the PHP would be able to resolve our son’s issues with eating and that he would begin to gain weight.
Within the first week of PHP, we were called in by the hospital and told that we should urgently admit our son into the Denver inpatient hospital (within the next 48 hours). Apparently his vitals were not looking good (ie his heart rate was showing signs of distress and his bloodwork showed signs of malnutrition). We had not anticipated this escalating further then it already had and we felt like our heads were spinning out of control. In hindsight it is amazing how quickly the downward spiral happened with our son and therefore felt utterly unprepared for what was to happen next. 12 hours a day, 6 days a week felt like overkill to us and maybe we were being to rash with our decision?
We had no choice and we were on a plane the very next morning. I remember questioning whether we made the right decision by bringing him to another state for medical treatment, or if we were making things worse for him by taking such “drastic” measures. After that we continued to question just about every decision we made. Once we admitted our son into the hospital, doctors said they needed to urgently install a feeding tube into his intestine so that they can get nutrients into his body and of course we questioned whether or not a feeding tube was necessary (even though it was). Then after seeing very little progress for the first several weeks, we once again we questioned if he would have gotten better on his own had we not admitted him in the first place. We questioned if we should remove the feeding tube because our son was becoming dependent on taking the food through the tube and was not eating any "real" food orally. Each time we relied on our son's team at the hospital to help guide us with the decision making even if we questioned it throughout the entire process.
Then when our son finally turned the corner, with his recovery, we questioned whether our son was ready to be transferred from inpatient to outpatient care. And finally we questioned if he was ready to face the “real world” once he was released from the hospital.
We walked blindly through this mess and put our trust into the doctors that were treating our son and followed our gut instincts. At the end of the day, the treatment our son received was top notch and the advice provided was amazing. Yes, there were a few times we didn’t follow the advice and there were many mistakes we made along the way, but our son’s team and my husband and I together, moved forward in recovery while we trepidatiously walked the path toward a better life for everyone in our family.
Even after we got home, there remained so many questions such as what do you do if a relapse occurs? Will we need to re-admit our child? Will our son ever get better? The list of questions is endless and the only thing I have learned to answer, with certainty, is that it is best to take one day at a time. Once you make a decision, trust it and trust yourself.
I decided to end today’s blog with an excerpt from my journal that I kept during the time our son was in the hospital. It was during the first 2 months when he was refusing to eat just about every piece of food that was laid before him. It was at a time when he was in Denver and we were in Austin. You will see how fearful I was on whether or not we had made the right decision on admitting our son.
The pain sears through my body
Not hearing his voice
Not seeing his face
Not holding his hand
Perhaps we jumped the gun?
Should we not have admitted?
Are we killing our son?
Did we do this to him?
No, I remind myself
he was so very ill.
His brain was starving
And his life, so dark
This was no easy path,
but the right one, I’m certain.