Lots of news tonight~~
He has been taken off the fentanyl—which is like morphine—and put on methadone to counteract any withdrawal symptoms. He will be on the methadone for 4 days. He has been on the fentanyl for 9 days for pain.
They are planning on taking out the breathing tube tomorrow morning around 8:00 a.m. This is very good news. He is continuing to breathe on his own since Sunday evening and because he has been breathing “room air” they don’t anticipate his needing oxygen after extubation. After the breathing tube comes out, I will be able to hold him again which is some of the best news of all! The only thing better than that is that they may take his feeding tube out tomorrow as well. If not tomorrow then Thursday. They want to get a Speech/language pathologist to come observe him and to do a barium swallow test to make sure that he will not aspirate when he swallows. After that I will be able to breastfeed him again and Jamie can bottle feed him. That will be a wonderful day! I can't wait to hold him in my arms and feed him again. We have lots of breastmilk stored up in the freezer at the hospital too for bottle feeding. He was getting breastmilk through his feeding tube for a little while but then his sodium levels dropped very low. There is not very much sodium in breastmilk, but a lot in formula, so he has been getting formula exclusively for a while. Most likely, his sodium dropped because he was draining so much cerebral spinal fluid, which contains a lot of salt.
Speaking of that, they may take out the ventric tube tomorrow or Thursday. This is neurosurgery’s decision and I didn’t see Dr. Ward today, but the PICU doctor thinks the removal of that tube should be fairly soon as well. He is draining much less fluid and has not been "popped off"--unclamping the ventric to drain--for over 24 hours and the last time it drained, it was 7 ml less fluid than the previous time. This shows that he is not producing excessive amounts of fluid and that it is becoming more stable.
Other good signs are that he is coughing on his own to clear his lungs and crying. He cried tears for the first time tonight while he was coughing and the nurses were suctioning his breathing tube. He also cried when they were trying (in vain) to find a vein to do labs. They were thinking of taking out the central line in his femoral artery tonight but only if they could find a good vein to draw labs and to give his steroids (to reduce swelling). The central line has not been allowing them to draw back blood (probably because his artery is so small and maybe because it is clotting), and is causing his leg to be swollen, but they decided to leave it in because they couldn’t find an alternative. They think they will probably take it out tomorrow as well. It made me sad to see him cry, making no sound because the breathing tube runs between his vocal chords, tears just squeezing silently from his little eyes, but it showed that he’s much less sedated and that he is sensing and feeling more. His gag reflex is working well also, which is something the neurologists were looking for.
The PICU attending physician told me tonight that she had talked with the pathology people and they are 98% certain that the tumor was a choroid plexus carcinoma. They are still waiting for 2 stains to come back. The slides are sent out to very specialized labs and there is a lot of transit time. This is why it has taken so long. We will probably meet with the people from Hematology/Oncology tomorrow--they call them "Heem-Onc". The Heem-Oncs don't want to discuss a treatment plan until they are 100% certain what is was, but the 98% is a pretty good bet that it was the choroid plexus carcinoma. The choroid plexus is the structure in the brain that makes cerebral spinal fluid. The following information is from St. Jude Hospital's website (because I know ya'll would be looking up information--but don't look too hard because there is a chance it is something else--but most likely, this was it) :
The choroid plexus carcinoma is sometimes called an anaplastic choroid plexus papilloma. In very young children, the lateral ventricles are the most common location of this tumor. Ventricles are cavities in the brain that are filled with cerebrospinal fluid, including the two lateral, third, and fourth ventricles.
The choroid plexus carcinoma grows within the ventricles. It eventually blocks the flow of cerebrospinal fluid, causing hydrocephalus (an abnormal increase of cerebrospinal fluid in the intracranial cavity). Headache and other symptoms of increased pressure are common.
<***this was the vomiting I saw and the abnormal motor movements***>
The choroid plexus carcinomas commonly grow into nearby tissue and spread widely via the cerebrospinal fluid.
<***this didn't happen because we caught it so early***>
About 3 percent of the primary brain tumors in children are choroid plexus papillomas.
<***The benign form***>
They represent less than 1 percent of all primary brain tumors. Choroid plexus carcinomas comprise about 10 percent of all choroid plexus tumors.
For choroid plexus carcinomas, treatment often includes surgery, chemotherapy, and radiation therapy.
<***He won't have radiation because he is so young***>
A second surgery might be recommended for recurrent tumors, followed by some form of radiation and/or chemotherapy.
Stem cell transplantation as a part of treatment continues to be under study.
Scientists continue to study chromosomal abnormalities, genes, and proteins that may have a role in the development and metastasis (spread to other parts of the central nervous system) of pediatric brain tumors.
Clinical trials are underway to help develop chemotherapy drugs effective against these tumors.
I will let you know what the Hee-Moncs say, whether it is something different and what the inital treatment strategies are as soon as we know.
Keep praying and sending positive energy and thinking and speaking good thoughts. As my mom said today, "We won't speak or even think negatively concerning Theo".
Keep sending us your love--he is getting much better :-)
We love you all--