Mother's Fight for Survival on Ventilator
My mother suffers from a profound alcohol use disorder. She was admitted to the hospital on August 22nd due to extreme neglect of her own wellbeing. At that time, she had not consumed food, bathed for a month, and had lost the capability to walk; she was also inappropriately urinating and defecating on the couch. Her height is 5 feet 5 inches, and she weighed just 97 pounds upon admission. During the withdrawal process, she encountered severe difficulties with swallowing and her speech. She attempted to communicate, but her words were largely unintelligible. Unfortunately, this led to her aspirating food, resulting in pneumonia. It’s worth noting that she had a prior diagnosis of emphysema. Consequently, the medical team concluded that she required advanced respiratory assistance and transferred her to the Intensive Care Unit, where she was placed on a ventilator on August 31st. Recently, her oxygen levels were reduced from 80% to 30%, and they switched her to a pressure support mode. The medical staff previously discontinued her sedation in an effort to initiate the process of weaning her off the ventilator. However, she ceased to respond to commands requesting her to squeeze their hands or move her toes. On Saturday, September 6th, they found it necessary to reintroduce sedation and increase the ventilator support due to a concerning rise in CO2 levels in her blood. After her admission, a CT scan of her head was performed and appeared normal. An MRI is scheduled for tomorrow. I am left wondering if these developments could suggest some degree of brain injury. It raises concerns about whether I should brace for the possibility that her condition may either plateau or deteriorate further. I have been advised that if she remains dependent on the ventilator for two weeks, I will need to consider the option of a tracheotomy.
Answers (1)
9/9/2025, 2:30:55 AM
OpenHealth AI
I'm very sorry to hear about your mother’s complex and challenging situation. It's clear that you are navigating a tough time and have many concerns about her health.
Key Points:
- Your mother is facing severe health challenges related to her alcohol use disorder and respiratory issues.
- The recent changes in her condition, including decreased responsiveness and the need for increased ventilatory support, are concerning.
- Monitoring her responsiveness and considering the results of the upcoming MRI are critical in the next steps.
Explanation: Your mother's condition reflects a significant decline, particularly due to complications such as pneumonia and potential effects from prolonged alcohol use, which can have serious ramifications on brain function. The difficulty in weaning off the ventilator, combined with the elevated CO2 levels, indicates that her respiratory function and overall neurological state require close observation.
It's understandable to worry about the potential for brain injury and the implications this may have on her recovery and quality of life. The forthcoming MRI will provide important information about her brain health, helping the medical team better understand her current situation.
Next Steps:
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Await MRI Results: Since an MRI is scheduled soon, this will provide valuable insight into her neurological state. Take notes on any questions or concerns that arise during discussions with her medical team regarding these results.
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Communicate with Healthcare Team: Regularly engage with the doctors and nurses about her care, especially concerning her condition changes, including her responsiveness and ventilator settings. Ask about prognosis and possible outcomes based on the MRI findings.
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Prepare for Possible Outcomes: Consider the diverse care pathways, including the potential need for a tracheotomy if she remains on the ventilator for an extended period. Discuss the implications of this with the medical staff to ensure you have a clear understanding of what to expect.
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Caring for Yourself: It’s critical to also look after your own wellbeing during this stressful period. Reach out to support groups for family members of patients in similar situations or consider counseling to help process the emotional toll.
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Document Changes: Keep notes on any changes you observe in her condition or behaviors, as this information can be helpful during discussions with her care team.
Understandably, this is a difficult time, and you are doing your best to navigate through it. If you have more questions or need support, feel free to ask.
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# 7-Month-Old Child with Abernethy Malformation - Exploring Treatment Options ## [7-Month-Old] Identified with Abernethy Malformation (Congenital Portosystemic Shunt) - Treatment Methods? **Age:** 7 months **Gender:** Female **Height:** Age-appropriate **Weight:** Currently 9 kg, was 2.8 kg at birth **Ethnicity:** Asian **Duration of Symptoms:** Present since birth **Location:** Uzbekistan **Pre-existing Health Issues:** Abernethy malformation (congenital portosystemic shunt), liver hemangiomas, chronic jaundice, anemia **Current Treatments:** Supportive management --- ## INITIAL PRESENTATION (June 2025 - July 2025) Our daughter arrived on **June 27, 2025**, presenting with: - Birth weight: **2.8 kg** - Marked jaundice (yellowing of skin and sclera) - Pale or clay-colored stools - **Bilirubin level: 245 μmol/L** (typically <20) An immediate ultrasound indicated multiple liver anomalies, initially thought to be hemangiomas. --- ## FIRST COMPREHENSIVE ASSESSMENT (August 1, 2025 - 1 Month Old) ### Multislice Computed Tomography (MSCT) with 3-Phase Contrast (August 1, 2025): **RESULTS:** - 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7 Months Old) - **Weight:** 9 kg (good growth rate in spite of condition) - **Jaundice:** Continues to be present (yellow skin) - **Stools:** Remain pale/clay-colored - **Development:** Achieving appropriate milestones - **Energy:** Appears to have a good energy level - **Feeding:** Normal appetite --- ## QUESTIONS FOR r/AskDocs We have been informed this is **Type 2 Abernethy malformation** (portal vein present). **Three treatment avenues have been proposed:** ### Option 1: **Endovascular Coil Embolization** (minimally invasive approach) - A catheter is inserted via the leg vein to access the shunt and deploy coils/plugs to close the abnormal vessels - Pros: No surgical incision, minimal discomfort, short hospital stay (2-4 days), no scars, enhanced safety - Duration: 1-2 hours - Recovery: 2-4 weeks for jaundice to show improvement ### Option 2: **Open Surgical Intervention** - An incision in the abdomen to ligate abnormal vessels and redirect blood to the liver - Pros: Direct visualization, effective results - Cons: Surgical scar, longer recovery time (7-14 days in hospital) - Duration: 2-4 hours ### Option 3: **Liver Transplantation** - We have been advised this is not necessary as the portal vein is functional and liver health is improving. --- ## SPECIFIC QUESTIONS TO CONSIDER: 1. **With a functional portal vein (6.1 mm) and improving liver function (ALT normalized), is it advisable to pursue endovascular closure as the preferred treatment?** 2. **Despite ALT levels improving, the bilirubin remains consistently high (242). Should this be a cause for concern? Is there a prospect for it to normalize post shunt closure?** 3. **Are the hemangiomas/nodules (11.6×20.7 mm) linked to the shunt? Will they likely resolve following shunt repair?** 4. **How urgent is the proposed intervention? Is immediate action required, or is there flexibility to wait a few months?** 5. **What complications should we be vigilant for during the waiting period?** 6. **Regarding endovascular closure - what is the average success rate for infants aged 7 months? Are there concerns regarding the shunt size (9.9 mm)?** 7. **The measurement of the portal vein has shown improvement from 6.1 mm to 3.9 mm; should this be perceived as a positive sign or a reason for concern?** 8. **Are there special directives (diet modifications, medications) we should consider while awaiting the procedure?** 9. **Post-procedure, how long should we expect it might take for:** - Normalization of bilirubin levels? - Return of stool color to normal? - Resolution of jaundice? - Regression of hemangiomas? 10. **Can you recommend any specialized centers for pediatric Abernethy malformation treatments? We are located in Uzbekistan but are prepared to travel (to Turkey, Russia, South Korea, etc.)** --- ## ADDITIONAL INFORMATION - No family history of hepatic diseases - Pregnancy and delivery were normal - No additional congenital defects identified - Immunizations up to date - No history of bleeding disorders - No signs indicative of encephalopathy - Child is alert and engaged --- **I can supply actual MSCT images and comprehensive lab reports if they would be of assistance.** We sincerely appreciate any insights you can provide. We are striving to make the most informed decision regarding our daughter’s care and highly value expert medical opinions. **TL;DR:** 7-month-old diagnosed with Abernethy Type 2 malformation (9.9 mm portocaval shunt, patent portal vein). Liver functionality is improving (normalized ALT) while bilirubin remains elevated (242). Evaluating options between endovascular coil embolization and open surgery. Seeking expert advice on optimal treatment strategy and timing.