Saturday, March 28, 2009

The Call

Since we wrote to the doctor on Friday morning, my husband & I were frequently checking our account to see if we have received a reply. We checked our inbox at least a couple of times every hour. We told ourselves that doctors are usually very busy and weren't so computer savvy and it might be a while before he checked his email and got back to us. We also had the doctor's mobile number and since we did not want to disturb him, thought we might wait till Monday morning for his reply before giving him a call. But, we were growing inpatient nevertheless especially because we desperately wanted our son to be out of tracheostomy but did not even know what the next step was.

It was quite a pleasant surprise when my husband received a call from the doctor on Saturday evening. In our email to the doctor, my husband had included his phone number in the signature but never expected him to call. The doctor informed that a CT might not be necessary at this stage and asked us to come to B'lore to carry out fluroscopy. He also told us it might take 2 or 3 days to complete the tests. He also informed that the doctors there would be extending all possible help. We were excited on the progress and have decided to leave to Banglore on Wednesday giving a weeks time for any edema caused due to last wednesday's bronchoscopy to settle down.

Hopefully, we would have solutions to my son's health problems by the time we come back.

What Next?

Even as I was looking for some good news, I was being told that the doctors at this hospital did not have experience in handling this problem. They were struck too. They said these sort of cases were really rare and there might be very few surgeons in our country with experience in this field. And, this was one of the best hospitals in my country and in fact the best one in my city. But yes, they were being honest and supportive. They felt bad about the way things were shaping up. I could see them wanting to help us with some sort of information. The head of the Pediatric Intensive Care promised us that she would do a research on this and get back us with more information. I wasn't sure how long would this be taking and would I have to keep reminding them about this.

I was totally confused. I did not understand a lot of things. That night I called a distant relative of mine who happens to be a pediatrician. Only after speaking to her, I was really beginning to understand the problem. Even she told us that it would be a better idea to wait for 6 more months and these type of surgeries were rare in our country. That there were about 3 different surgical approaches to rectify Subglottic Stenosis but just one or two types of procedures are practiced in India. She also said that there still exists a slight chance that it could heal on its own in this 6 months.

The very next day, the head of the pediatric intensive care came to my son's room and informed us that she had made a few phone calls the previous evening and gave the details about a surgeon in the neighbouring state who specialised in these kind of surgeries. She had even spoken to the surgeon about my son's problem and he said the success of the surgery depended upon the location of the stenosis. And that he could not comment without having the details about the size of stenosis. He has also informed that we could qualify for some financial aid for the surgery since a surgery might mean a prolonged stay and expenses in the hospital.

So, yesterday morning we have emailed the surgeon describing my son's problems. We are eagerly waiting for his reply.

As of now, we do not even know the next step. such as what is the test that needs to be conducted to get further details about the subglottic stenosis or what is the probability that the narrowing could heal on its own. It is frustrating to feel so helpless and sit without knowing what to do next. Hope the doctor responds to the email soon.

In the meantime, I have started exercises for my son. I put him on his tummy and with some help from my end, he is able to hold his head up for a while. I have also started my research and trying to post questions in different forums across the world. Even as I wait for answers, I'm hoping that the stenosis is cured on its own without a surgery. After all, Miracles can happen to anyone, at any time. Hope its our turn now.

Huge disappointment

When I saw the tracheastomy tube intact on my son's neck, I felt numb. I was just blank. I was wondering as to how much longer would the doctor ask us to wait before giving a next try. The ENT's face was extremely grave. I was surprised that he should look so upset.

So, as he started to explain, I was listening with a smile. The optimism mask was taking over. Probably a few more weeks of waiting. It was after all not going to be so difficult that we were sort of used to the tracheostomy! But, then I heard the doctor saying that his edema hasn't reduced even a little bit and that his bronchoscope could not even advance beyond the voicebox. I was shocked! In a minute, all my optimism vanished! Not even a slight improvement in six weeks???? He was saying that it now did not look like a case of simple edema. There must have been scaring due to the ventilator and that it might need a surgery to rectify the problem. However, it can heal on its own too. Probably we need to wait another 6 months...

I was losing hope. There were tears in my eyes. I was just half-listening to the doctor. I could hear him saying that we could give a try after 2 months. But, somehow I began to feel that even after 2 months nothing is going to change. I felt that the tube would be staying for a long time and that we all need to get used to the tracheostomy. There were whole lot of things that I had put on hold so that it could be done after the trach was removed. Now, it looked like things could not be postponed anymore. My son's PT and OT needs to be resumed, flash cards needs to be introduced and there were so much things to be done!

Ironically, despite tears in my eyes, I was smiling even as the doctor was explaining - have I gone crazy or was I just wanting to show off that I was a strong woman? I did not have the mood to introspect.

Friday, March 27, 2009

Its Wednessday Finally!

Well, my post has come earlier than monday. This can only mean one thing. That decannulation did not happen. Else, I would still be in the hospital with my son for observation.

So on Wednesday evening, when they carried out the procedure for my son in the PICU, I was just waiting outside and the door was wide open. It was so difficult to wait there in suspense. I felt like taking a few steps and moving the curtain to see if decannulation was successful. I was standing quietly so that I could hear something - something positive! I was discussing all probabilities with my husband but tried to be postive. Why was the procedure taking so long? Was it because they have decannualted and observing him for sometime? What is the nurse taking from the cupboard? Could it be a manual ventilator? I could not take the suspense anymore and my head was banging. I asked my husband to call me with the good news and went to take a quick bite. When I was back the procedure was still on and they asked me to wait in the counselling along with my husband.

So, finally we were called. My husband entered the room but I was waiting outside because I thought I could not take the bad news that we might have to wait for some more time. I was waiting for see my husband smiling and calling me inside which would mean that decannulation was successful. But none of this happened! Someone asked me to go in. I still had my hope and optimism. Although the doctor's face said it all, I still had my hope. It was only when I saw my son (of course, my eyes just ran to his neck) and the nurse still using a manual ventilator to pump through his tracheostomy, did the fact strike me.

Wednesday, March 18, 2009

Waiting for Wednessday

Wednesday is going be the big day. We've been waiting for it for more than a month and a half now. We're hoping for things to go on well. If everything works out in our favor, my son would be getting rid of his tracheostomy on Wednessday. Doctor would first be conducting a bronchoscopy to see if the swelling in the tracheal passage is gone before removing the tracheostomy tube.

True, that tracheostomy has helped my son in a lot of ways. When my son couldn't be extubated, tracheostomy seemed like a boon. Because, it put an end to a lot of things. An end to the pain that he was undergoing due to prolonged ventilation, an end to being sedated for more two weeks, an end to not being fed anything orally, an end to him being confined to bed when he should be enjoying his life without any problems to worry about like any other 7 month old.

But, it had its own disadvantages too. As long as the tube stayed, we would not be able to hear his voice (we terribly miss his cute babbles which we are hoping to enjoy from Wednessday). Also, he requires frequent suctioning - about once in 15 minutes to half hour when he is awake and about once every hour or two at nights. Its really tiring us. More than us, it is causing my son a lot of discomfort and he has started to cry and push us off when we try to suction. And most of all, although he has freedom of movement some extent, we can't let him roll to his tummy with the trach tube since he hasn't gained head control yet. Also, we are unable to take him out except for his hospital visits and short walks in the terrace because he needs frequent suctioning and it is difficult to carry the suction machine wherever we go.

So, an end to all these discomforts is just a day and a half away. I'm feeling like a school girl about to take my board exams. I'm sure it would soon be Wednessday afternoon and we would be eagerly waiting for the doctor to complete the procedure and give us the good news. Till then, I'm keeping my fingers crossed and being optimistic. Hopefully, next week I would be happily narrating about my son's successful decannulation in my next blog. Until then, good bye!