swallow evaluation

Mahiya when she woke up after her code, was evaluated by speech therapist (ST). At that time she had her jaws tight and did not open much, the ST called it tonic bite, and said this is due to her severe brain damage (which I hated to hear). Then the ST put her finger to see if she had gag reflex. NO.... then an ice chip in her mouth to see if she would swallow. She did swallow but ST said she is very slow to swallow waits until her mouth is full. So we were given a big NO to oral feed. After couple of days I saw her mouth was very dry,so I started giving her water in a syringe and she loved it. Couple of weeks later ST came again and said the same thing again...........we were very upset first and then we understood that aspirating could cause even more set back. So we have been tube feeding (J tube) Mahiya since her code.

After coming home, we have been giving her little taste of food that she loved before her code it seemed like she was liking it. Last week we had another evaluation and the ST gave her half a baby spoon of apple sauce. She opened her mouth and bit on the spoon and won't let go. Again the ST started "she still has the tonic bite". NOT AGAIN!!!. But she let go in few seconds and swallowed the apple sauce. ST looked inside her mouth to make sure there was no residue. There was  no residue and Mahiya took another spoon. Drank water out of a cup. ST was happy with her and said that she does not feel like she is aspirating but still she wanted a swallow study to be done before we feed her orally. Swallow study is done under continuous X-ray. She will be given some liquid to drink mixed with barium (tasteless). This barium can be watched under X-ray to see if she is swallowing without aspirating. But ST is OK with giving her little pureed food until the swallow study. Liquids have higher risk of aspiration.

Mahiya has not had much solids even before her code, so she it is new to her. Hope she starts eating solids and likes it.

Whew...

Mahiya does not like to be laid on the floor. She wants to be held all the time. She was like that even before she coded. She would be crying the whole time during her each diaper change. The scary part is if she gets really upset she will hold her breath and her heart rate drops. Usually her breath holding spell lasts for few seconds and she will start breathing normally. Blowing on her face helps, but after transplant I am scared of doing that, as I don't want to give her my germs. This afternoon, she was in my lap and then I had to go send my older one off to school, so I asked the nurse to watch her and put her down. She immediately got very upset and started crying. She held her breath, I immediately picked her up and was trying to calm her. But she would not calm, she held her breath for so long that I started freaking out. She could not let go. Her face started turning little blue, I thought she was going to pass out. I got so scared that I could not think, then suddenly blowing came to mind. I did not care about germs and blew on her face twice and she immediately stopped crying and took a deep breath. Then she just had her eyes wide open and staring at me without any expression on her face, as if she was in a shock. I got very worried. I wanted to make sure that she was OK. I grabbed my phone and played one of her favorite video and she started smiling.... whew what a relief.....

What matters most?

We had an neurologist appointment. We were really scared before the appt, as we did not want to hear anything negative about Mahiya's neurological state. I don't know if we are cheating ourselves or just don't want to face the truth. But the most important thing is we don't want anything or anyone to do even a slightest damage to our hope. Hope is all left in our life and it is our strength. The appointment went well. The Dr. J was a very nice person. He is one of the best in our area. He spoke for 30 mins and it was very pleasant. He neither gave us false hope or ruin our hopes. He exactly understood how devastated we are and the pain we are in. One of his point made a great impact on me.

He said "I have treated so many neurologically affected kids, kids who will never walk or talk to kids who top their class, but they all are happy. They don't care about their disability. They are happy the way they are. It is like happiness is in a separate gene. Keep them happy. Just enjoy the time with them. It does not mean that you have to forget about their disability, but you have to learn to lower your expectation for your kid. Keeping them HAPPY matters the most."

It was such a great statement. We don't know our destination, but will keep moving with hope and try our best to keep her happy.

When we bring up any issues with Mahiya to the doctors, they say "she is very complex it is not easy to tell anything or pinpoint a reason". We don't know what to do sometimes.Wish there was a specialist who is an expert in all fields. Mahiya's progress has been really slow. Patience is a virtue. Hope our patience will be rewarded.