Well, this is the third time we sit down at the computer, I think this entry will be more difficult to write, but you must do to move forward.
Mami comes with "Yeya" in spite of the Doctor, feel and he starts talking, he tells them what is the reason that the child is in that unit, obviously was because I had many crises and were not able to manage with medication so they had to resort to sedation. "Sedation" that seemed more important and dangerous than epilepsy itself, is when the doctor says my situation and said a phrase that mommy is taxed, "Madam, your child has a high sedation, he does well because we were not able to control their seizures, now no longer have them, but the problem is that being so sedated and being so small (only 4 months had just turned at the time), your lungs would not work, then would have to intubation, and there is the danger some babies so small, after intubation, when they removed the tube are not able to resume breathing on his own and then have to go back to urgent intubation in the way that we possibly could, but then you and I we would have to decide what to do with your son. "Mami stays quiet for a moment and Yeya is the speaker, asks if that is usual or occasional, the doctor says it's a risk we need to know is there, but mom only thinks of the phrase "would have to decide what to do with your child, and suddenly interrupts the conversation first Yeya doctor and asks" what do you mean by what to do my son is telling me I would have to decide whether to disconnect the respirator? let's see, my child is here only for epilepsy, "the doctor says I have to be informed of everything that can happen, but mom does not hear anything else, gets up and leaves the consultation Yeya and start holding up to encourage it, do not worry it's not going to happen, I am strong and that everything will be okay, but mom does not hear anything, just think that she will not kill his son, cell phone rings and it is my godmother, Mom begins to mourn and cry and tells all, have to hang Yeya by nerves and takes her home, give him a reassuring infusions and when returns to the hospital.
When reassuring calls and tells daddy, daddy is your greatest support and is not, so he gives forces from far and between that and the force so great that it gives the family makes focus and calm to be able to pull forward. "I have to be strong to help my child" that is the phrase that is repeated every time he falters and he repeated the family, and through it all begins on track, I start down the sedation and thank all the anticonvulsants I have posts, I have no crisis, so every time down until you reach a point of being without sedation, and that's mom and also lift the make friends and family to do so more strongly. After almost 10 days I go to ground, thank God we left the ICU.
Now start almost a month and a half, testing and more testing, a ton of analytical, many punctures, lumbar puncture, urine collection, metabolic tests, another MRI, a path in the head, an operation for a thigh muscle biopsy and up to two venotomy because of the negligence of an assistant preschool section, I started a central line (the venotomy are small surgeries which takes a good vein for one way). Luckily I was transferred to infants and there if you mom is a bit more peaceful.
Many changes in medication, to see whether any I control myself, getting to be 4 anticonvulsants at the same time, but almost no control. At this time I do get another bronchiolitis and I get a bacteria because of the venotomy. Well
daddy comes almost every weekend, what happens fatal, we made so much and there in the distance suffers a lot and hardly sleeps. I no longer above the river, nor look and it has a hard time accepting it, to do nothing and not cry.
We on Friday, Dad and definitely will come on Monday and I now give me the high, the doctor decides that as I have 4 days without crisis, I can go home and wait there , the results of the tests are to come, Mommy does not know that each time there is a change in medication step 4 to 6 days without crisis or at least much less but then return again, but the doctor decides what to do.
I come home at noon with mom very frightened, and no mistake that night become crises, but is so angry and so tired that choose not to take me to the hospital and keep her looking after me, think that as we are on a weekend and the neuro-pediatrician or the computer does not work until Monday I will be without any specialist to see me that day and for that I stay home, she is fully prepared to look after me, takes more than a month learning in the hospital, the nurses have taught to defend herself me and my crisis is my best nurse.
Well, there are still 5 months to go until the day that decides the operation, but the length of this hospitalization was the most scored in my family, I entered the hospital with a slight smile and left up without mourn.
continue ........
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