This is going to be a long post.
It all started on the 1st of December, Miss.Peg was home for the Wednesday PT session and noticed Sripathi's eyeballs were staggering. I told her that I’ll check about that with the doctor as he was due for the second flu shot on that day. At the clinic the doctor described it as vertical nystagmus. The flu shot was canceled. She said she would contact the neurologist at Texas with his condition. That evening she called to let us know that the neurologist wanted us to contact the neuro ophthalmologist as he did not suspect any neurological activity that could cause nystagmus for Sripathi. Unfortunately our neuro ophthalmologist at TCH did not respond. So our pediatrician suggested that we visit an ophthalmologist here in Orlando. The next day was Sripathi's vision therapy session. So when Miss. Susan came home she also checked his eyes and started noting down certain points that she said she wanted to research further. Her concerns were not just the nystagmus, but as to why Sripathi is not tired of playing his one eyed jack game. He seems to be cultivating a habit of closing one eye most of the time. Maybe he has better view and focus with one eye. If that is the case we need to correct it at the earliest. She asked me to talk to the eye doctor about it.
Our appointment with the eye doctor is only on the 14th of December. So while we were waiting, a lot of other surprises cropped up. No doubt it all began with a seizure at 7:40 am on the 5th of December. It was while Sripathi was trying to take another nap that morning. Later that evening half way through the Sunday Satsang he fell asleep. While I stepped into the kitchen to get the prasadam for neiyedyam Sripathi started another seizure. This time we thought that his congestion was working him up. After that he was in posticale state and did not wake up until morning, sadly with another seizure at 6:17 am. This one was long. We immediately called the neurologist at TCH and left them a message. Then we called our pediatrician as we wanted her to check him for congestion.
So on 6th we went to the pediatrician again. She checked him thoroughly and said his lungs were very clear. All his congestion is working up only in his nose and throat. But since it seems to be bothering him too much she prescribed an antibiotic AMOX TR-K CLV. Also Xopenx via Nebulizer. The same day the nurse from the neurologist 's office called and confirmed to increased Sripathi's Keppra to 5.5 ml twice a day and of course we have to hold on the wean off process on phenobarbital for another week.
I can really tell he felt better with the nebulizer that night and also the following day. But on the 8th he had another seizure while he was taking his afternoon nap and right after the seizure he relieved himself of gas and also pooped. I cleaned and changed him and he went right back to sleep. The pediatrician had mentioned that the antibiotic could cause loose stool and I guessed that must be it.
But that night rather just before dawn on the 9th of December at around 3:20 am, Sripathi started breathing heavily. I could not tell if he was having a seizure as he was not stiff not were his eyes pulled to any direction, he was nodding his head rubbing his nose taking real heavy breaths. I woke up Aravind and we were both trying to calm Sripathi. I picked him up and after a while he seemed fine and went back to sleep. We were confused as to what was happening. Should we call 911? But he is sleeping again and does not seem pale or irritated anymore. So we did not want to disturb him. And he seemed to be fine that rest of the morning. But later that afternoon when he was taking him nap, 12 hours after that last breathing episode he did the same thing again, woke up dazed, nodding his head, taking really heavy breaths. He seems so uncomfortable and when I picked him I noticed he had been drooling so much that there was a big wet spot right where his head was on the mattress. And he kept taking deep breaths even as I was carrying him. I then recorded it so I can show it to the doctor. I then called our friend Dr.Lekshmi at Houston, I was so confused and tensed that I lost my manners to excuse myself for calling her during her working hours. I just said Radhe radhe Lekshmi ji please listen to this and I put the phone near Sripathi. She asked if he was coughing. So that's how loud his breathing was. I told her it was how he was breathing and I told her he was drooling and seemed very uncomfortable. She was worried that he was having an infection in the throat and probably it was swollen and he is finding it difficult to breath. So she asked me to take him to the doctor ASAP.
I called Aravind and told him that he has to come home and we need to take Sripathi back to the doctor. I called the doctor and they asked us to come in at 4:30 pm. Dr.C checked him again; she felt he was doing really well. They checked his SP02, that is the oxygen intake while he was lying, while he was being carried and also while he was sleeping. It was between 95 and even reached 100 while he was sleeping. So the doctor was happy that he was getting enough oxygen. She saw the video and she also checked his throat and said he had no infection and no swelling. So it must be just the congestion.
She asked me to give Sripathi normal Saline via nebulizer. She said probably the Xopenx is opening up his lungs well but his congestion in the throat is not clearing out and that's the reason he is not getting sufficient air. And she also asked me to continue turning on the humidifier. We were doing all that he seemed ok but at times we can notice that he is breathing through his mouth.
Phew as things were getting so and so better on the morning of 11th December I noticed a white discharge when he was peeing. "No I don't usually open his diaper and see how he pees." But that morning I was cleaning his diaper as he had just pooped and just as I was changing his diaper he peed and that’s when I saw the white thing and strange that even Aravind was beside me watching the same thing.
It was a Saturday, usually only the nurse would be available at the clinic but we still wanted him checked. Fortunately Dr.C was in that day. We took him in at 10:30 am of course they put a bag on him to collect his urine samples. The doctor came and checked him. Dr.C said he was good, she could not find anything wrong. And I trust her, though he is been going through a lot in the fast 2 weeks and still Dr.C tells me he is doing fine. I don't worry if she was being careless because she really gives attention to Sripathi and is always very cautious before any vaccination or prescription. So far she was able to catch his problems well before they become critical.
So we wait till 11:50 am and Mr.Sripathi does not want to pee even after drinking 4 ounces of milk and close to 7 ounces of juice. Usually the clinic closes at 12:00 noon. They would have waited but Dr.C had a meeting later that afternoon. So she said the nurse will teach me how to go about the whole urine testing process and that Dr.C would call me at home at around 3:00 pm to get the results.
To before we left I did the cleaning and bagging process so the nurse could make sure I did it right if in case we had to do it again at home. Then she gave me the urine testing strips. It was simple all I have to do it collect the urine dip the strip and start writing down the results that is see the change in color of the various tests.
So at home 30 minutes after we had changed his bag he peed. Oh and this time we did not notice any white stuff. I have to admit I'm bad technically and Aravind is almost color blind. So now you can be sure that our results were wrong. And we did not realize it until the doctor called at 3:00 pm and asked me to redo the test and that she would call me back at 5:30pm
Sripathi woke up at 4:00 pm. I fed him and gave him a warm bath and put a bag at 4:40 pm. Sripathi just would not pee and I was told to clean and rebag him if he does not pee within an hour. It was almost 5:25pm. I did not want to mess it this time. So I cleaned him and bagged him again at 5:30 pm. Finally he peed at 5:40 pm. This time I carefully tested the strips and noted the results at the accurate time. And doctor called at 5:45 pm
She was happy about the results mainly the Leukocytes and the nitrates in the urine, which were both negative.
Oh and yes I did not see any white discharge this time too. So I though it must have been something on the diaper. Anyways the doctor asked me to call her if we find anything unusual. But so far he is pretty fine.
BTW in all this confusion I don't know how but I had poured hot water yeah hot water on my face. I have a few burns on my cheek and forehead. Please don't say "ahh". I'm doing fine and the burns are drying and healing real fast. I thank God that it was my face. I cannot image how difficult it would have been to handle Sripathi had the water fallen on my hands or feet. I have never heard anybody, by mistake pour hot water on their face; it would usually be the hands and feet. It was my karma that I have to suffer burns but look at the grace of God; he made it easier for me by making sure I did not hurt my needed hands and legs. I'm just flabbergasted by his grace.
Tomorrow is Sripathi's appointment with the eye doctor. Keeping my fingers crossed.
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